My Mother's Journey With Dementia

Mild Cognitive Impairment Definition

noreply@blogger.com (Hannah) — Tue, 18 Jan 2011 13:00:00 +0000

Mild Cognitive Impairment Brain

I remember when my first family member was diagnosed with Alzheimer, and some of the definitions people used confused me. One of those definitions I wasn't perfectly clear about was Mild Cognitive Impairment. I remember hearing that, and saying 'what is mild cognitive impairment'?

Cognitive pertains to our mental processes of perception, memory, judgment, and of course reasoning. Its our way of processing thought and information.

As we get older most have some cognitive decline, because that is part of the aging process. It may take us a little longer to remember a word, or remember someone's name. We notice forgetfulness may gradually increase. In most cases these changes aren't bad enough to interfere with our normal activities.

On the other hand, mild cognitive impairment is more than just 'forgetfulness'.

Some of the Symptoms of Mild Cognitive Impairment:
You tend to lose your train of thought during conversations with people. You lose the ability to truly keep with the theme of the conversations. For example, you and your friends are talking about the senior bus trip you just got back from. You can't seem to keep up and understand the conversation.

Making decisions, planning things, interpreting instructions make you feel increasingly overwhelmed.

You forget important events, social activities, and realize you are forgetting things more often than not.

Looking around you have trouble finding your way in familiar environments.

People can experience depression, anxiety, impulsiveness, aggression, agitation, irritability, apathy, and the judgment does start to slip.

The last part to me is more than understandable. Why? Life all of a sudden is more than frustrating even in the smallest of areas. You also realize that friends and family are noticing these changes as well. It would make anyone fearful.

These symptoms don't automatically mean Dementia or Alzheimer. They are looked at as some of the criteria of mild cognitive impairment.

Its important to get the doctor, and do all the recommended battery of tests. It is possible that individuals can remain stable, while others in a small number of cases improve.

Quoted from the Alzheimer Disease center Website:

At present, research shows that a significant number of individuals diagnosed with Mild Cognitive Impairment progress to Alzheimer’s disease. The people who do not progress to AD remain in this stage indefinitely. It is critical for researchers and clinicians to understand why some individuals remain at this stage and why others develop Alzheimer’s disease. It is also extremely important to study the potential causes of symptoms of Mild Cognitive Impairment in order to develop appropriate medical and psychosocial treatments.

If you are interesting in more information I found a mild Cognitive Impairment Information sheet as well.

Its a .pdf file. I have found with Mozilla Foxfire Browser I can't open it. If I use my Internet Explorer Browser? I can!

Anyone else get confused about BIG terms they use? When I did figure out what mild cognitive impairment was? I felt kind of silly. Do they make up these huge medical terms just to confuse us, or maybe just make themselves look smart? (raspberries going out to the medical community!)

A Living Will Form For FREE?!

noreply@blogger.com (Hannah) — Sat, 15 Jan 2011 17:21:00 +0000


Photo Entitled Face The Fear

WELL almost - how about 5 dollars!

When you are caregiving one of things that comes to mind is, 'Am I doing what they would wish?' BUT... Do your loved ones know what your wishes would be?

I wanted to talk today about a almost FREE living will form that I found. We all can relate to the resources that go into caring for our loved one with dementia and/or Alzheimer. There are too many people that think they can NOT afford making a living will, and I hope I found an option for you today that will change your mind about writing a living will.

My father wrote me a letter before he passed about some of things he wanted, and things that scared him about dying. He had all the legal living will paperwork in order, because he had a terminal illness. He talked about personal things outside the legal document issues as well. The one thing he pushed both verbally and in writing was that towards the end he wanted no pain, and wanted to be sleeping. I made sure his final wishes were done.

My brother David and I were talking about my mother wanting her hair looking good, because that makes her feel better.

Do you have your wishes known like my father did? I didn't want him to die, but I felt like I gave him a gift when his time came. His living will, and his letter made me feel at rest in some important ways when he did die. I want to give my family the same option!

If something happened to you would your family members KNOW how you would wish to be cared for? If you were faced with only a life support option due to accident for example, would your family have know HOW you would wish things to be carried out?

Living Will documents is something we all need, and I realize some feel it is something for later on in life.

The thought of a living will gives some people the shivers.
A living will isn't something you need to worry about in this time of life.
I can't afford a lawyer for a living will!
I wouldn't know how to do the living wills forms, or don't know where to find examples of a living will form.

We all have our excuses don't we? Its scary, and at times hard to talk about.

Everyone has something in common, and that is we are all going to die someday. We read in the news tragic things that happen all the time, and see friends and relatives dealing with awful circumstances. I need to stop and think about how I would want things to happen if something happened to ME! You can't do that while you are on a breathing machine in a unconsciousness state for example! It would be TO LATE then.

I can understand that some people feel they don't have the resources to afford a living will. I was recently pointed in the direction of help that to me was almost like FREE living will! Can you afford $5.00 to spend on a living will document that IS legally binding? If you can afford 5 dollars than you maybe able to have yourself a living will. I was told about the 5 wishes program by Aging with Dignity, and in my state this $5.00 living will is something that WILL stand up legally.

There are 42 states that will accept this form as your living will, and YES you can even change it when the times comes.Lets look at some of the example living will questions this form covers:

The person I want to make care decision for me when I can't
The kind of medical treatment I want or don't want
How comfortable I want to be
How I want people to treat me
What I want my loved ones to know

They do answer your questions about living wills, give you suggestions for your living will, and start the ball rolling for discussions about your medical living will wishes. 5 Wishes Living Will gives you a quick example of their form online.

I will tell you it is a .pdf file, and if you are using FireFox as your browser? I had to use another browser to view it, because firefox doesn't seem to like .pdf files. I just copied the file address into Internet Explorer, and I could see it FINALLY!

Keep in mind this living will template could be used in the other states that aren't covered on their website. It seems to me that the questions on this living will template are things that would need to in any living will document.

It would depend on the cognitive abilities of the Dementia or Alzheimer's patient if this could be used for them as well. You don't want to wait until something happens before you make sure this paperwork is in order.

I found a video online about the 5 wishes program by Aging With Dignity, and she went into examples of items people may wish to include in their living will.

If you can't see video click here.

What is nice about the 5 wishes living will program is they have resources for community groups, videos, and suggestions on HOW to start this discussion. All of these options are VERY affordable!

As I caregiver I want to be sure my mother whom has dementia has her wishes fulfilled, but we also need to stop and think of our own. I hope this resource helps you get yourself a living will document of your own.

Poppaw and His Alzheimer Story

noreply@blogger.com (Hannah) — Wed, 05 Jan 2011 13:00:00 +0000

As I mentioned last time I will give a 'readers digest' version of what my mother in law saw as we dealt with my grandfather. She saw all three relatives, but my grandfather's story is one that ticks me off royal! She got to see us up close and personal WHY we hate this disease, and I can't blame her for saying - Dementia is different than Alzheimer!

After what we went through? The avoidance, denial, and stigmas attached to Dementia and Alzheimer? I hate it but its understandable. I think it effects people when they see how bad things can get. I see it has human nature in some ways, but on the hand I want to say, "PEOPLE WAKE UP!"

My second grandparent that had Alzheimer's would be my grandfather. We called him Poppaw. We as a family had a hard time of it helping to care for him. We lived 1,000 miles away, and my grandmother (Mimi) and he were a very traditional southern couple.

Mimi made a promise to him regarding NO nursing home, and letting him to die in their house. That is all well and good, but my grandmother was in her mid 80's at this time. She as well as starting to slip mentally, and I'm sure part of it was the stress of caregiving.

My mother was of course in contact with the state they lived in, and we found out very quickly how individualistic the state was.

It was hard to get them to cooperate when it was clear to us that we needed to have Poppaw removed from the house. It made no sense the resistance that we got, because he was clearly a danger to himself and others.

You would have thought they would have CLUE one after the police picked him up from wandering the streets of his town, and having to bring him back home (this happened more than once)! That's just ONE example! Another would be the soot on the ceiling of their home from a fire at the stove.

We contacted their church that they had been going to forever, and we (and the church friends) attempted to WELL drive him on in one day to a senior living facility. That blew up in our face, and yes there was encouraging 'talk' about this prior. We didn't just drop the bomb of course. He would have nothing to do with it that day, and being they also came from a very traditional religious background? Well, lets just say since he was the 'authority' of his home they were going to respect his wishes - the church.

We were also in contact with the state social welfare type of service. They were going to send over a social worker to the home to access the circumstances. We warned them that my grandparents were an old southern couple, and to please send over someone of the same color.

That is one thing we noticed about my Poppaw was his - well BIGOTED - way of looking at things tended to come to the surface more readily as he got more advantaged with Alzheimer. The state of course ignored that request, and my grandparents wouldn't allow the social worker to even come into the house.

The state at that point pretty much told us they were our problem. We then hired a private party (caregiver) to come into the home, and help as much as was humanly possible. We had to do something while we figured out our next move.

My mother took a number of trips down to their house, and my father, myself, and my brother took turns going with her. I have to say I do resent the fact that the state pretty much refused to help us help them.

They told my mother if she wanted to move my grandfather into a Alzheimer's facility she would have to do this on her own.

I will never forget my mother's comment.

"I can't do that! He will hit me! My mother will never forgive me as well if I pushed it that far."

Poppaw was a big man, and at that point was more hot tempered. My father at that point was terminally ill, and wasn't able to help 'force' him out. YES, I did say FORCE because that is what the state told us we would have to do in a nutshell.

There was one day when I was there that I will never forget. Poppaw was sitting on the sofa. He had lost so much weight, and he was dressed like a homeless person. He had his pajama bottoms on under his pants that were to big for him at that point. He was dirty, and he was weak.

Their church at this point had already stopped coming to get them for church services. He was getting too belligerent at this point for them to handle at church. There were stories about how he was hitting people there as well, and I'm sure loads of stories of his agitation. I can't blame them there okay? What I was more mad about was the fact they pretty much abandon them altogether. The phone calls stopped, and so did the visits. This couple that had dedicated their lifes to this church were all but forgotten. We didn't find out about that until the caregiver we hired told us.

My grandparents were getting to point where it was overwhelming even for the caregiver that we hired to handle things in our absence. Things tend to happen pretty fast just when you least expect it I guess. We had all kinds of logs in the fire as to what avenue we needed to try next.

Meanwhile, trying to keep my grandparents healthy and reminding them to EAT! More than once they had 'meals on wheels' come to the house, and my grandmother wanted to take the meals and strength them further. She would divide each individual meal between the two of them. So the two dinners they received for that evening - one for each? She would turn it into one, and save the other for later.

My mother made one final attempt with their church, and this church was the one she grew up in. The church was pretty powerful in that area, and she told them something awful was going to happen if SOMEONE didn't help her.

From what I gathered the church contacted the state, and threatened them. If something happens to our 65+ year members of our church WE will be coming after you. I'm sure it was said nicer and more politically correct. The only thing I was thankful for is the threat worked.

The sad part to all this? It was to late for Poppaw. My mother was down there when they were finally removed from the house via the state. We did have warning, and mother flew down there. Both my grandparents were placed in the hospital, and I was going on the next plane. I went straight to the hospital from the airport.

Poppaw had lost more weight than the last time I saw him. He was in a general area within the hospital, and was so weak they had him laying down on a stretcher type of thing. They cleaned him up, and placed a nice sweatsuit on him.

I remember my mother telling me that she mentioned I was coming to him. How he looked at her, smiled, and looked rather pleased. He always called me his favorite granddaughter. I have to giggle here...I was his only granddaughter.

I walked over to him, and introduced myself of course. He looked over at me, and just smiled. I grabbed his hand, and smiled back. I mentioned to him how excited I was come again to see him, and how I just got off the plane to rush to his side. He squeezed my hand, and shook a little. He just beamed.

I can't tell you the sense of relief I had when I saw him that place. I knew he would be taken care of, and that was if he lived. He wasn't in good shape at all.

We had our short conversation, and he seemed so happy that I was there. It was strange because he had trouble of course knowing WHOM I was in the past, but that day there was a connection of sorts. I honestly do think he did know me by the way he was acting. He was doing things he had done with me all my life. I'm talking body language we had used since I was a child. The special times just me and him.

Mom drove me back to the hotel, because their house was in to bad of shape to stay in. I got a bit settled, because we figured we would go back in a little while to see Mimi as well. I told my mother I was going to get a newspaper at the front desk. I was having some coffee, and paying for the newspaper when my mother walked into the lobby.

As we walked back to the room together she told me the hospital called. Poppow died right after I left him. He must have died while we were driving to the hotel. My mother told me he must have been waiting for me. He let go right after our short visit.

There is way more to the story of course, but every inch seems like a nightmare from hell. I don't think most states handle things like they do in Texas. Mimi and my other grandmother we got out of the state, and we brought them to where we live. I hope Texas has got better at handling things since then. From what I learned not all states handle these circumstances the same - THANK GOD for that!

I think after my mother in law saw all the circumstances we had to deal with? I guess it would be easy to say its just dementia and not Alzheimer. I can't blame her. My father in law died in the very early stages of dementia, and thankfully she didn't have to deal with most of the nightmares that can come with it.

Why not stay in her state of mind when you don't have to go there, and deal with the stigma that is attached to this? I can't blame her. I wish I could do it! On the other hand? That doesn't work to well when you are trying to raise awareness, work towards a cure, and bring to light barriers of caregiving, etc though does it?

Talk about a rock and hard place.

Its just Dementia - NOT Alzheimer!

noreply@blogger.com (Hannah) — Tue, 04 Jan 2011 20:59:00 +0000

Stigma Of Alzheimer Dementia

It has been a few years since I have had to directly deal with Alzheimer I have been doing a little catching up lately. Sadly, I have found that some things have changed, and others just stay the same.

My Father in Law had dementia, but he passed away from other complications. I remember when we first got his diagnoses, and my mother in law was adamant that dementia was different than Alzheimer.

To this day I have to still speak about 'similarities', and treat them as different. To her the 'forgetfulness' is different somehow. I don't know what the reason was, because I stopped even going there. I had the first taste of someone truly having issues coming to grips with how Dementia and Alzheimer's were NOT connected in her eyes, and of course the stigma attached.

I have had loads of experience just going with the flow compared to reality when it comes to dealing with this disease. I went with the flow of her opinion as well. That it truly didn't bother me just to treat them as separate for her sake. Its not worth fighting about it, because everyone deals with this in their own way.

I will admit it did hurt when she would remind me it wasn't like my family with Alzheimer's. She never would have meant it to be hurtful, but at the time I do remember taking a bit personally. No, I don't think she ever knew in past or even knows presently. I don't take it that way now. It was a bit fresh back then.

Since my father in law never got the point of my family members with the progression of the disease? I think it just easier for her. I'm sure part of it was from the fear of watching what was happening in my family.

When I read about a story of a care giving organization not having ONE person show up at their event called, 'National Memory Screening Day'? It didn't surprise me at all. YES there is denial about this disease, and people don't want to think about it. Looking from their prospective? I can't blame them.

The disease changes your life forever. The costs are present in every area of your life. Who would want to come to an event, and be handed news that would be life changing as you sat in their folding chair? I will admit I'm not sure I would even be that brave!

If you look at life, and how people handle things at times it doesn't surprise me. Lets look at some familiar 'denial' type of statements outside of the dementia realm:

THAT will never happen to my son or daughter.

My church doesn't have that issue!

My all time favorite that I heard from my childhood friend's mother after her son got suspended from school? "My son didn't know if you turn off the lunchroom lights a food fight STARTS?!"

Ahh Yes we can do the denial game with so much less on our plates why not Alzheimer! (giggles)

I think after my mother in law saw all the circumstances we had to deal with? I guess it would be easy to say its just dementia and not Alzheimer. I can't blame her. My father in law died in the very early stages of dementia, and thankfully she didn't have to deal with most of the nightmares that can come with it.

Why not stay in her state of mind when you don't have to go there, and deal with the stigma that is attached to this? I can't blame her. I wish I could do it!

I will next give you a reader digest version of my grandfather, and that nightmare journey dealing with his Alzheimer's. When you look at his story alone? I wouldn't want to purposely deal with it either.

Alzheimers Boomer Express Rose Parade 2011

noreply@blogger.com (Hannah) — Sun, 02 Jan 2011 18:35:00 +0000

It's Time To Face Alzheimer's

Take a real time look at the BOOMER EXPRESS! This float was in the 2011 Rose Parade, and made possible by Alzheimer's Association and Pfizer.

It received the President's Award for most-effective use of flowers, and it was called "It's Time To Face Alzheimer's."

Talk about PRETTY! WOW!

I clipped a copy of the video from the Rose parade, and you can see all the details in the Boomer Express Video below.

If you can't see the video click here

I thought it was pretty I wanted to throw in another picture I captured!

It's Time To Face Alzheimer's

Congratulations Boomer Express, and for the President's Award for most-effective use of flowers.

Boomer Express

noreply@blogger.com (Hannah) — Fri, 31 Dec 2010 17:21:00 +0000

The Tournament of Rose Parade will have a float called the Boomer Express to raise awareness of Alzheimer's disease.

The float will have a bell on it that will ring every 70 seconds to bring attention to someone being develops Alzheimer's.

They have also made a website in which you can submit your pictures, and stories. Heck even check out the website just to look at neat designs they made from all the photo submitted!

The float, titled "The Boomer Express," is sponsored by the Alzheimer's Association and Pfizer. It's the final piece of their "It's Time to Face Alzheimer's" initiative designed to encourage all Americans to join the fight against the disease.

This message is now more crucial than ever for the 10 million at-risk baby boomers in the country -- with the oldest members of the group turning 65 in 2011. By 2030, the number of seniors with Alzheimer's is estimated to grow by 2.5 million. Along with that growth comes a critical need for caregivers such as Miranda who have the skill and compassion to care for individuals with this disease.

When the first wave of baby boomers begins to turn 65 next year, the numbers of people affected will only continue to escalate. I pray that brings the awareness to others, and it helps research on how to top dementia or Alzheimer.

The Driving Dementia Momma!

noreply@blogger.com (Hannah) — Wed, 29 Dec 2010 22:45:00 +0000

Cute Driving PICTURE! Tee hee!

I was doing a bit of reading about the dementia patient and driving again. Recently, I found Alzheimer's reading room. and the site presented a podcast about driving and the dementia patient. Carole B. Larkin is the Geriatric Care Manager for ThirdAge Services, specializing in all forms dementia care.

When we had an in home dementia evaluation we also had a Geriatric Care Manager come to our home. Carole is from Dallas Texas, and that is where my mother whom has dementia was born.

Anyway, here is the podcast about when its time to stop the dementia patient from driving.

If you can't see the podcast click here.

I had to update my last message here, because it seems they will suspend Mother's drivers license on Monday. The doctor is out of the office until then. I noticed the podcast above mentioned the type of facility she will go to. Its called a rehab evaluation test for her driving skills due to the dementia. My brother and I were told it will take upwards of 3 hours to complete.

My brother was also in touch with my mother's insurance company, and they are looking into how a dementia patient and driving is handled with them. Sigh. I will admit I'm glad David is calling to tell her today about how her driving is going to end on Monday. I know WIMPY huh? I'm sure my phone call will come right after that.

I contacted a company that I'm familiar with here for in home care called Visiting Angels. They will be at my mother's home on Monday at 10:00 am, and I will meet them there. We have made arrangements for them to come some of the additional days during the week for her church group, and hair appointment. We wanted to be sure those things were not canceled due to her not being able to drive right now. Thursday my brother will again try to take her for her driving test.

Does anyone else have experience in this?

Mother did finally agree to have Visiting Angels come, but I'm sure it will be a different story on Monday. I had them come to the house, and meet with her and my brother as well. They offered for her to try them out for a week, and of course she refused. She told me before I left, "Maybe in two years!" I think after reading the doctor's note that changed things a bit for her.

The podcast about when to stop the dementia patient from driving I felt had some good points. I will admit I'm still waffling about RIGHT NOW?!

Mother's Drivers Test Delayed

noreply@blogger.com (Hannah) — Wed, 29 Dec 2010 17:22:00 +0000

My brother called this morning, and mother canceled the driver's test. He said that she genuinely doesn't feel good. I'm sure part of it is nerves over the test, but she was vomiting all last night. It sounds like they have rescheduled things for tomorrow.

He was mentioning that he feels he needs to go over, and take away her keys to the car. I mentioned to him that I have purposely been placing myself in the position when visiting with her to have her drive when we had to go places. I have done this a couple of times recently, and she never scared me so far.

I think that relieved him a bit, but at times he can be rather laid back. You never really know, but I think he was okay. I can sure understand his position, and maybe I'm wrong as well. I'm thankful we can talk without getting nasty. I don't believe either of us are like that, but when emotions are on high alert? You just never know what can happen I suppose. I think we even each other out pretty well. I admire him very much.

I told him I was more concerned about her INSIDE the house at this point. When I mentioned the food hoarding circumstance to him, and how she seemed to come around more to the idea that her dementia is in fact hindering things. My brother told me he brought that up to her recently, and her response to him was silent. I guess she just starred at him. That is not unusual for her. I told him how I stay cheerful the entire time. I didn't tell him this, but I knew I was walking a narrow line at the time.

My brother also mentioned that he read her the letter from her primary care doctor. He had given me a copy of that letter over the Christmas Holiday, and I think we were both taken back by how blunt he was. It was a reality slap type of blunt for both of us. We knew it in the back of our hearts and minds, but reading it in black and white like that did effect both of us.

My mother was very upset over this communication from her doctor regarding her dementia. He mentioned that she had been showing signs of progressive dementia, he feels likely Alzheimer type. She has been medicated without significant improvement. The doctor noted that at the minimum she needed in home help. She had been a good housekeeper, and meticulous in so many areas. Those things have changed since the dementia set in.

Mom has finally communicated that she will agree to in home care part time at this point. My brother wanted me to contact the company we had come over for the interview, and set something up now. He is going to contact her long term insurance company, because the social worker told us they should be picking up the cost.

I mentioned to him to leave the car keys alone at this point, and I realize both he and the doctor disagree with me now. I think taking them away from her prior to the driving test will send her over the top. She would also be left with no transportation, and to me personally it felt unfair to her. I did mention that I realize that day is coming, but for right now please leave it alone. I want to wait until the drivers test is done. I'm sure he wasn't totally comfortable with my comments, but it sounds like he will leave it alone for now.

My mother normally calls me each day, and I had noticed she didn't call yesterday. I'm sure the letter from the doctor that communicated her dementia circumstance did upset her. I also think she is scared to death, because she knows what she is facing. She knows because as I have mentioned prior we have been though this three times before, and this realization I'm sure was devastating to her.

I also know personally that when the in home care people come she will be nice. She will be polite. That is just her. I also realize she will likely show agitation towards us due to the dementia. Okay. She won't just show agitation due to the dementia, but I'm sure the fact she feels she will lose her independence. I don't think she sees this as me (or rather us) trying to allow her to hold on to for as long as possible.

Mood: Devastated once again. It won't be the last time. It hurts so much taking these things away from her, and knowing how much it hurts - for all of us really. How do you communicate that to someone with dementia? For right now I will try to keep things as lighthearted as I can. I want things to stay as upbeat as possible so she doesn't completely crash and burn.

UPDATE! Well my brother called the primary call doctor to let them know of the delay. The doctor is out of the office until Monday. At that point they will suspend her driver's license until the driving test report is done. I got the date wrong for that as well. They will do this on Thursday of next week. My brother is going to call her to let her know, and most of her activities will be done that she drives for anyway.

Anyone have experience with this?

Driving and the Dementia Patient

noreply@blogger.com (Hannah) — Tue, 28 Dec 2010 18:35:00 +0000

Dementia and driving as you can imagine may not be the best combination. I think we can all giggle at the picture I found today, but on the other hand it can also be a sad reality.

I have to admit I have been in the car with my mother, and so far she hasn't scared me.

I remember going to visit my grandparents for vacation when I was younger, and my grandmother could scare the daylights out of anyone driving. Heck that was BEFORE the Alzheimer! I was adult by the time her condition of Alzheimer's changed things, and we always drove after that until they finally took her driving privileges away.

According to the letter I received from my mother's doctor he doesn't seem to think mom should be driving at all.

Mom is a very social creature, and she has always participated in church, AARP functions, and once my father passed away a senior grief group. She also gets her hair done on a regular basis.

We recently had a new major road in our area completed, and it saves us time for travel at this point. During the Christmas dinner family members were telling her about the road, but I'm sure at this point if she continues to drive? She will stick to what she is familiar with.

Tomorrow my brother is taking her to a rehab evaluation test for driving at a hospital. He told her that this will either keep her insurance rates 'as is', or possibly reduce them. That maybe true, but we all know the real reason behind this.

My brother called to see how this all works, and they told him they only report directly to the doctor. I have to admit my heart dropped when I heard that. I mentioned the doctor's opinion on the subject already.

This is going to completely crush her. Although it will be an additional reason to encourage her for the home health care worker. She can retain her social activities, because a home health care worker can drive her.

Nora Nagatani wrote an article about the 'older driver', and she has some good links for additional information. Check it out! WebMD also had a older driver video online that I think most of us can relate to when it comes to the Dementia or Alzheimer's driver. Also ABC news had an article about WHEN is the best time to take away the driving privileges of the dementia patient or the Alzheimer's patient.

I have to admit I'm struggling over this issue as well. My grandmother was an easy decision, because she scared me driving in the car with her. My mother's driving so far doesn't scare me at all. I do realize that the day is coming of course, but I guess it will be up to the doctor at this point. I do think my brother doesn't want her to drive anymore, and if there is any hint of 'maybe' for a while? I think I could be voted out of this decision due to the doctor and my brother being in agreement.

I have to admit I am questioning myself, and wonder if truly I'm just in denial. Sigh.

From another article I read about dementia and driving:

The Academy's previous guidelines recommended that all people with mild dementia give up driving, Iverson says. But recent studies present a conundrum, he says. "On the one hand, there is research showing people with dementia are up to 88% more likely to fail a driving test than people without dementia," Iverson says. "On the other hand, some studies show as many as 76% of people with mild dementia can pass an on-road driving test and can safely drive."

Faced with the conflicting research, the guidelines committee concludes that "patients with mild dementia should strongly consider stopping driving," he says.

The guidelines can help identify people at higher risk of unsafe driving, without unnecessarily restricting people who don't pose a danger, he says.

In creating the guidelines, the committee generally defined safe driving as being able to pass a road test. "It's not a perfect measure, but based on the evidence, it's the best we have," Iverson says.

YES YES it does say that 'mild dementia' can still retain safe driving habits - at least for a while. The second part made me question my decision:

One of the best ways to identify unsafe drivers, according to the guidelines, is a standard test called the Clinical Dementia Rating (CDR) scale. Administered by a doctor with input from caregivers, the CDR assesses people's memory and problem-solving skills as well as their ability to care for themselves.

Caregivers can be extremely helpful in identifying unsafe drivers -- but only if they're honest, Iverson says. "If a caregiver says, 'I'm concerned,' or rates a patient's driving as 'marginal' or 'unsafe,' that really pans out," he says.

But studies show that caregivers who deem their loved one's driving as "safe" are rarely accurate, "probably because they are trying to protect the patient," Iverson says.

"And if a patient himself says their driving is fine, that doesn't help. In fact, the strongest evidence we found is that this doesn't correlate with safe driving," he says.

I do believe I'm being perfectly honest in my opinion on my mother's driving skills. I have been watching, and ready to 'freak out' due the fact I know this reality is coming sooner compared to later.

She has a clean driving record, and always has had that. I would say about 5 years ago she stated driving at night is uncomfortable for her, and she will try to avoid it.

I know of other elderly family members without dementia that do the same thing. They state that is one of the 'red flags', but that started years ago.

I have been in cars when relatives have scared me to death while driving, and according the comment from the article above? Am I trying to protect her? I guess the comment made me doubt myself. I do know that the day is coming, and there is no way around that. I don't want her to kill herself or anyone else.

On the one hand I think its to early, and on the other hand? How easy will it be once that line in the sand is present? Since circumstances prolong the restrictions at times do I just go with the program, and encourage her to stop? Is my love for my mother clouding my judgment? IS it my fear? Can I be blunt and just say this SUCKS! (sorry for the swear word - I'm frustrated with myself and this circumstance)

When I spoke to my brother the other day I did complain to him that we have been through this 3 times already, and WHY is God asking us to do this again? I do resent it. Its hard for the family, and its really hard to have to break their hearts for their own good and safety. I can see why depression is common in dementia patients.

Driving and the dementia patient is a hard decision. Its heart breaking either way you go.

Hoarding and the Dementia Patient

noreply@blogger.com (Hannah) — Mon, 27 Dec 2010 23:02:00 +0000

Well I hope everyone had a pleasant holiday! As I had mentioned before we had an in home dementia evaluation done. My brother had received a letter from my mother's doctor regarding his recommendations, and he gave me a copy.

It was nice to read from the doctor that he felt my brother and I were taking the appropriate actions towards my mother. He had also mentioned what I'm sure most that deal with dementia patients do at first, and that is clearly 'resistance'. My mother is warming up to this reality slowly but surely.

I had to go over to my mother's house after the in home assessment, because it looked to me as if she was hoarding food. The refrigeration and freezer were packed, and the cabinets were just as full. I don't think she was hoarding as the condition you read about, because I don't think she knew what she had and what she didn't. I have read that hoarding with dementia patients also makes them feel secure. It was the in home evaluation that called my attention to this circumstance.

I went over to clear out the kitchen, and I only got as far as the refrigerator, freezer, and one cabinet. I had 9 to 10 black garbage bags full of either spoiled or expired food.

I tried to keep the conversation light as we worked, and asked her to wash down the shelves as I emptied them in the refrigerator. I figured it would keep her busy, and she wouldn't question every last item I pulled out. I will say after a while she just gave up, and went along with anything I dumped. I don't think she realized HOW much she had.

I didn't comment, didn't ask questions, I just whistled as I worked. YES I mean that literally. I wanted to be sure she saw absolutely no stress in my posture or attitude.

At times I could tell she was getting worried, and I just joked about how often I have found food I forgot about myself. Then I made a joke to her that since my house is now full of teenagers? I have to admit the food doesn't spoil anymore it just disappears before I get one bite. My mother just giggled, and told me she remembers those days herself.

I would move to one lighthearted subject to the next. I remember reminding her about her comments about her food bill after David went to college. I made a joke, "How many hundreds of dollars per month did that food bill go down MOM?"

I put all the food that could go back in order of expiration dates. I reminded her about 2 years ago she had a repairman into the house, and he left her garage door opened to the house. How after that it took how much time to figure out how to get rid of the mice that welcomed themselves in?

I used that as the excuse to get rid of any open packages that were questionable. I reminded her that mice love open packages, and its not worth getting sick over to keep them. I knew that would gross her out completely, and it worked as well. I can't tell you if that were the case - mice being the food - but it did need to be thrown out.

I last thing I would want to do is embarrass her for any reason. Its not her that is the issue after all. Its the damned dementia, and I think going out of my way to show her respect is needed. I think anyone would feel funny if someone came to their house to dump close to 90% of the food they had in the house. I could also see her mind working, and to be honest I think it may have been a good wake up call for her.

I do have to go back, and continue with the rest of the cabinets and her deep freezer. I wanted to at least get done with the parts I KNEW she used every day.

I had my reminder call about the dementia as well.

"Hannah? When are you giving me your Christmas list?"

"David has done your shopping already MOM!"

She asked this about 5 times while I was there.

My son's birthday was at the beginning of the month, and he is saving for a Xbox. He asked for Best Buy gift cards. Right after Thanksgiving I had mentioned this to her, and she went to the store. She purchased a pile of gift cards, and placed $5.00 each on them. She didn't want to forget his birthday, and I could tell she knew she would. She brought them over to my house, and told me to give them to him the morning of his birthday. You have to wonder if the number of the gift cards wasn't a hoarding circumstance as well.

She tells me later that she wished I had told her about his birthday, because she would have given him more. We have Christmas dinner here at the house, and she told my mother in law she wasn't sure she did anything for his birthday.

I have read in the past that the hoarding at times is not only due to the dementia, but it also gives them a sense of security.

That made perfect sense to me when I think back to my grandmother, and how her top drawer was always full of tissues. I will admit right now my grandmother was a pack rat by nature, but in the Alzheimer's unit there wasn't do much to grab. The kleenex was just something she grabbed, and she will tell you it was because she wanted to be sure she had enough. We all took turns dumping most of them when we got her out of the room.

My mother knows her mind is going. I'm sure she also stocked up on food to be sure she didn't go hungry. That is another reason we want her to have home health care, and she will soon enough. I have also noticed that she is losing even more weight, and the home health care worker will help with diet as well.

She asked for 3 - 4 evaluations to be done JUST to be sure its dementia, and we have them at this point. My brother is taking her for her drivers test which they are calling a rehab evaluation test at a hospital. I have this gut feeling her driver's license will go soon, and I will remind her that her that an home health care worker will drive her places as well.

I found an article about Hoarding and the Dementia Patient. I will leave you with some of the article.

And according to Susan London, LMSW, QDCP with the Alzheimer’s Foundation of America, many times hoarding does demonstrate a need for comfort because of the deep fears and anxiety experienced by some patients.

Others will hold on to items because they fear their memories will be lost without that tangible evidence of the past. As Alzheimer’s patients lose track of what is going on in the present, those items could become more and more important.

Dr. Bolouri says hoarding behavior is most likely due to insecurity, anger, and confusion as brain function is decreasing. And London, at the Alzheimer’s Foundation, agrees, adding that a loved one may take things that aren’t theirs because they like it for the comfort, memories, or because it calms those fears and anxieties.

Communicating with people with Dementia

noreply@blogger.com (Hannah) — Thu, 16 Dec 2010 18:36:00 +0000

I had been doing some searching on youtube for Dementia and Alzheimer videos.

I watched this one, and I have to say it bothered me. I guess because it seemed like the man's approach to the relative would leave him confused. The rapid fire of questions to me wouldn't give him any time to process, or even acknowledge the questions.

I know my grandparents would have flipped out if I approached them like this.

It seems like the wrong approach for a dementia patient, and seems to go against the communication techniques they speak about for dementia patients.

Persons with dementia may attempt to describe an object that they cannot name or create a word to describe the object. I have noticed with my mother it doesn't even have to be an object. I found another article I felt was helpful in the area of communicating with a dementia patient.

Any Comments?

Clock Drawing Test For The Dementia Patient

noreply@blogger.com (Hannah) — Fri, 10 Dec 2010 14:42:00 +0000

Dementia Patient's Clock Drawing Test

One of the items during in home dementia evaluation that was mentioned was the clock drawing test.

As I mentioned yesterday we had a In Home Dementia Evaluation or Assessment for mom.

One thing I noticed about yesterday that I didn't mention was I saw my brother answering the questions posed to her by the Geriatric Care Manager. It didn't happen all the time, but I did notice he jumped in when he knew she would struggle answering the questions. I'm sure that is our 'human side' isn't it?

Something tells me we will both be in the habit of that soon.

The clock drawing test makes so much sense, but I have to admit it has to be rather humiliating to the dementia patient.

The clock is very universal, and so I can see WHY they use it. It would seem to me people all over the world? Their clocks are all going to look the same.

I had to giggle, because I'm not a true artist myself. My circle would be crooked, and I would have to start by placing the 12 and the 6 on the clock. I would then move to the 3 and the 9. I would then of course fill in the rest of the numbers.

If you asked me to draw that on the computer? It would look pretty, but if you asked me to draw that on paper?

All the numbers would be present, and time would be correct...can I say I'm sure a kindergarten's clock would look better than mine! For me I wouldn't appreciate someone asking me to draw a clock just because I would want it to look 'just so', and I can't imagine how much more uncomfortable it has to be for the dementia patient. Their concerns wouldn't be the same, but I was trying to put myself in their place for a moment.

My brother had brought my mother to the doctor when they did the clock drawing test, but the in home dementia assessment yesterday mentioned it again. How you can use it to show a small picture into how things will change in time.

I thought right away about how my mother struggled with figuring out how to set the clock back in hour when our time changed. The clock and the dementia patient? I can see how a love hate relationship could start there for the dementia patient regarding the clock drawing test.

If you are not familiar with the clock drawing test I will mention the basics.

1 point for the clock circle
1 point for all the numbers being in the correct order
1 point for the numbers being in the proper special order
1 point for the two hands of the clock
1 point for the correct time.

A normal score is four or five points. I found an article that more information on different types of clock drawing tests. It looks like it has hotlinks to the ones described.

They are basically using the clock drawing test to search for clue about areas of damage or change within the dementia patient.

To me personally? This is an area of true heartbreak. It hurts to watch them struggle, and we both have different aspects of frustration.

I know for my mother with dementia just like most patients? Familiarity is good.

I know on some days she likes the digital clock, and other times the traditional one. If I were guessing? The traditional clock is the one she will stick to just because she has used that all her life, but I also know there will come a time in which it will not mean the same.

Anyone have any stories about the clock drawing test?

In Home Dementia Evaluation or Assessment

noreply@blogger.com (Hannah) — Thu, 09 Dec 2010 23:55:00 +0000

In Home Dementia Assessment

My mother's doctor had ordered a home evaluation due to her dementia. The business card basically reads, "Geriatric Care Management".

It was very tastefully done, and you could tell the woman that came went out of her way to make sure mother was comfortable. I did truly appreciate the women that did the dementia evaluation.

We should have the in home Dementia assessment by the end of next week, and both my brother and I got the impression it will validate our fears.

She did mention that mother is very high functioning, and yet in some very basic areas she is struggling.

The dementia assessor asked for permission to look into her refrigerator and cabinets within the kitchen. I could tell my mother agreed thinking she truly had nothing to hide.

She has enough food for a family of 5 for 2 months, and then some. I noticed 2 partial 1/2 gallons of milk, and both had expired last month.

After the dementia assessment was over I asked my brother to check the deep freezer downstairs, and it was in the same shape.

Tomorrow I will go back, and we will dump stuff together.

She mentions during our conversation about her diet that her microwave was broken. My brother and I were a bit surprised because she never mentioned it. It was less than 5 years old, but my mother has an older house so I wondered if a power surge had blown it.

As you can imagine part of the in home dementia evaluation was to ask her HOW she was cooking her food, and she mentioned that she placed it in the oven. Mother mentioned how it didn't taste the same, and how she had been eating other things instead. She pointed other foods out in the refrigerator, and the dementia evaluator mentioned that some of the frozen food maybe bad as well.

I checked the microwave after the dementia assessment was over, and my mother has only one plug in the area where it is at. Her telephone was plugged in, and I started to look for the microwave plug.

It wasn't plugged in, and my mother made her excuses about that.

I unplugged the telephone, and noticed that the outlet had cracked in half. I unplugged the phone to check the microwave functions, and I guess that is a good thing. I mean we wouldn't have known otherwise.

We don't want to FOOL around with electric stuff broken. YIKES!

I had brought her a phone I had around our home when her phone died within the last 2 months, and I was a bit surprised I didn't notice broken outlet when I replaced it.

My brother went to the hardware store to get materials to repair it. We also got a surge protector, so we could plug in both the microwave and the phone together.

NOW we just need to call, and make sure she remembers the microwave is fine.

I think I will stop here for the moment, but I will mention I feel my mother is starting to get resigned to the fact she needs more help than she felt she did. I think she was relieved that her outings were encouraged despite her dementia. I don't know where she got the idea they were NOT in the first place.

I will continue later to tell more about the in home dementia evaluation with our mother. Its dinner time!

Anyone else have experiences in this area?

Legal Paperwork with the Dementia Patient

noreply@blogger.com (Hannah) — Wed, 08 Dec 2010 13:00:00 +0000

Legal Paperwork with the Dementia Patient

One of the earliest things we learned when dealing with my grandparents and their Alzheimer disease was to get the legal paperwork done as soon as possible.

I remember one grandparent in particular who was a handful when it came to the cooperation part of that aspect.

I have to say now that we are dealing with the dementia with my mother she has been very cooperative. Can I say so far anyway?

Dementia and its progression can often be unpredictable, and we couldn't fall for my mother's excuse "Later!"

Pre-planning can avoid costly legal pitfalls when not prepared. You will save the caregiver and the family trauma and grief later.

Talk to the person soon after a diagnosis of dementia while she is still able to think clearly and make decisions about how legal, financial and medical arrangements will be handled in the future. To me this also has an aspect of self respect, because they are competent enough to help with their wishes. (Most of the time at the Beginning anyway)

You don't want to wait to long, and I realize some people claim they have time like my mother likes to say. I remember reminding my mother of a car accident I had, and brought to her attention I couldn't 'plan' for it beforehand. She could be in a car wreck, or her dementia progresses, thyroid issues or a host of other things could happen prior to our planning ahead.

I think for some it is a personal issue of 'control' in a way, and I do understand that. In my mother's case I mentioned how could we help her if she was unconscious from accident or something similar. I reminded her our hands would be tied.

If the paperwork isn't in place before that she would have people that don't know her having control over what happens to her. "WE" (my brother and I) would be helpless to make sure HER wishes were taken care of. I left the 'dementia' out of the equation. She seemed to come around at that point.

We all know that this can be very touchy subject, but the wills, trusts, power of attorney, etc. truly need to be taken care of right away. One reason is simple as I mentioned prior: You want to be sure their wishes are taken care of. Additionally is the fact if you wait to long to do this? Its a huge legal battle due to competency.

It can be a downright nightmare if you wait to long. Every state, country, and sometimes even towns and county's can be different as to what they require.

Due the fact that Dementia and Alzheimer patients can be confused and frustrated easy I would recommend doing the research on your own before approaching this. Educate yourself FIRST, and then bring your family member into the loop later. I have found if you are comfortable, confident, and reflect 'its not big deal' attitude? They are less intimidated, scared, and all the rest of feelings that come along.

Sadly, this is not like the past in which you enter unknown waters together. Get yourself a book locally to get you started, but keep in mind AGAIN every area in the world may have different requirements. I sure enough of them are the same that will help you get a head start.

This needs to be a family affair so to speak! I realize some need to keep in mind family dynamics, so I am going to just generalize some items that come to mind.

Determining who will be responsible for making decisions if the person with dementia is unable to do so for herself is equally important. (Keep my car accident example in mind - the person being unconscious at the hospital approach if bring up dementia is a sore subject. This as you know applies to many circumstances.)

Find out if she already has completed Power of Attorney documents. If so, who's been named. Where are they, etc.

If no one has been designated, then you need to know who is the legal substitute decision maker for personal care. If you have siblings or other relatives that will be involved in the care of the person with dementia, call a family meeting to discuss how decisions will be made.

Remember! It's important to support and respect the wishes of the person with the disease. At times I have seen families make this process turn into a cat fight, and we all need to remember its not about US!

While advance care planning, including written documents, is voluntary, organizing important legal documents and putting them in a safe place as soon as possible after the diagnosis can allow the person with dementia to be involved in making these decisions. And it helps the caregiver and family members be aware of the person's wishes. I think you realize by now its always wise to seek legal professional advice.

We have attended support groups in the past, and you can't imagine the legal, medical, etc nightmares ahead if all the T's aren't crossed in the manner the areas your loved one lives in sees fit.

I found when approaching my mother about this issues I kept things general, and didn't bring the dementia into the discussion. I approached as a 'common sense' plan to make sure her wishes are always taken care of the way she wishes them. You can't do that if the legal junk isn't in place. KEEP it simple, and not to many details though - you can lose them quickly!

Christmas Last Year - Our First Validation of Dementia

noreply@blogger.com (Hannah) — Sat, 04 Dec 2010 22:47:00 +0000

Christmas Nutcracker

I went out to lunch with a girlfriend of mine this week. I was updating her as to what was happening with my mother, and her journey with Dementia. She mentioned going out shopping, and since it seemed my mother had issues with shopping last year. We decided maybe we will invite her along to help her this year.

I told my friend about our medicine delivery service that we had setup for her, and it seemed to be working well. I mentioned that my brother and I were pushing for some home care for her, and had an interview in which my mother refused the service. We have plans! I will write about that experience later I promise!

I did get a call this week from her doctor stating that her thyroid levels again are NOT what they need to be. I'm sure they felt it was her NOT taking the medicine, but since I know she is? I asked them to look into maybe the medication at this point isn't doing what it needs to do. I'm planning on calling the Pharmacy on Monday just to be sure they also are NOT getting FULL containers back. I have seen her take the medicine, but with dementia? You need to double check everything.

I was speaking to my mother about Christmas this year. I told her to make a list of her wants or needs. She - as she has for years now - told me she didn't have any. She has said that even prior to her diagnoses of dementia. This is a norm for her. I think when I go over this week I will bring sales flyers, and she what she comments on! That has always been my trick!

It was about Christmas time last year that I knew my fears had some substance about her memory. The grandchildren make Christmas lists, and since her grandchildren are bit older now? They love their games, and my mother has always LOVED to buy them. I don't know about most families, but for me a list from people always make my shopping experience easier. We all make lists in our family.

Ever since my father passed away my mother always invited her local girlfriends over for a quick Christmas Eve lunch. She knows everyone is busy, and mom always made it quick. She always enjoyed it.

Last year as usual my mother called to let everyone know the time in which the meal would be on the table Christmas Eve. I think the confusion started when my sister in law called to mention the time was a conflict for my brother's family. That isn't an issue at all, but the problem came when she didn't tell anyone else. Her girlfriends, and my my family all showed up at the time she gave. My brother's family was 2 hours late. WELL not late, but you know what I mean! We didn't know they were given a different schedule!

I noticed when I arrived my mother had already prepared the food for the lunch, but it had been cooling on the stove for some time. Due to the confusion with my brother's family? I ended up 'reheating' the food twice, but I have to say it was good anyway!

Lastly, we exchange gifts before everyone leaves. We all noticed that the gifts from my mother were all wrong. For example, the title of the game the children requested may have been correct, but the game system wasn't. I remember my nephew asked for a PlayStation game. When he opened the package the game title was correct, but it was for Xbox not PlayStation. My daughter asked for Sims Two book, and received Sims Three. We also had an agreement with my mother in law, and my mother for that Christmas. They would help contribute funds towards our new washer and dryer that died prior to Christmas. We were not expecting anything else, and she ended up giving us gift cards she said due to no Christmas list.

It was right after Christmas that my brother and I started planning. We knew there was a problem, and that was the first TRUE day we started our journey with my mother who has dementia.

Communication Techniques with the Dementia Patient

noreply@blogger.com (Hannah) — Thu, 02 Dec 2010 13:00:00 +0000

Communication Technique

I was doing some quick reading about communication with a dementia patient.

I remember when my grandmother had Alzheimer, and I would go and visit her at the special home she lived in. This one day I walked in, and right away I introduced myself.

"Hello Endy! It's Hannah your granddaughter. I thought I would stop by for a visit!"

She was thrilled, and I know she knew me for a moment. I made sure I introduced myself, because I didn't want her to think she was speaking to some stranger. I also didn't want to scare her. I know you have to keep in mind their memory condition, and if a strange person came up for a hug I would be alarmed myself. I tried to keep that mind each time I went to visit.

I also learned with time you needed to continue to introduce yourself. I would always included 'granddaughter' for the extra family connection, and not just name.

I remember one afternoon she was speaking to me about how her parents came to visit her that day. Her parents had passed away before I was born, and I didn't correct her. If you saw the look on her face she was so excited about the visit, and it made her feel good to have them there.

I figured if this circumstance wasn't going to hurt anything why point out facts that may upset her! It was a nice visit, and I was able to learn things about my great grandparents that I didn't know. Can I tell you if they are accurate? No. Does it matter? Well, not to me it didn't. She was having fun sharing, and that is all that mattered to me.

I remember another day I can to visit, and she asked me if I wanted to go down to the lounge they had on the floor. I agreed, and we started to walk down the hall to the lounge. One of the staff said to us, "OH Evelyn it looks like you have company today. How nice!" My grandmother responded, "Yes, she is not kin but a good family friend." I just smiled and winked at the staff member.

I remember when my grandmother was busy speaking to someone in the lounge the staff member made sure her statement didn't upset me. I knew enough about the condition at that point that it didn't bother me. I just let it go, because it would distress her if I corrected her.

When you deal with memory loss things like this happen, and I know first and foremost you don't take it personally. Its the disease talking, and not the loved one. There would have been nothing to gain by correcting her. I'm sure I would have made her feel awful, and what purpose would that have?

It's loss that you must accept. Its a loss you can't control. Can I say I didn't mourn the loss? No. I can't say that. You mourn the loss regularly, and some days are better than others. My job as her loved one is to make her as comfortable and as safe as possible. I can't allow those types of things to hinder the time we have left. You almost have to learn a new layer of empathy, and remind yourself all the time its the disease talking. You can mourn the parts she has loss, but you still need to celebrate the parts you still have.

In my grandmother's case? She was always a very cheery, and friendly person to most anyone. No, she doesn't remember me as her granddaughter. There will be times she will, but most of the time she won't. I can love her anyway, because of whom she is. The 'special' parts about her? The parts I love? They will always be in my heart, and she would send me reminders in real life very now and again.

I think that is the part of my mother's journey with Dementia that I'm not looking forward to. There will come a day where she no longer knows who I am. For now she is pretty easy to deal with on most levels, and I know she tries the best she can.

I have to stop and think of this condition a little more now. I can't drill her information anymore. I saw a video today, and it reminded me about how I need to approach things in baby steps from here on out. Its a balancing game, because you don't want them to feel like you are talking down to them - or like a child.

I thought these two videos give good information, and wanted to share what I'm trying to get across as well.

Calming Frustration and the Dementia Patient

noreply@blogger.com (Hannah) — Wed, 01 Dec 2010 17:49:00 +0000

I found a blog today written by a dementia patient. Its nice to read things from the other side, and some of her insights I can understand. I can almost feel my mother is in the same place.

Dementia Blog

Reading body language is a skill I am losing. Earlier in this illness, I could feel a disconnect between what people said and did. When their words and body language didn’t match, I would always believe and respond to the latter. For several months now I have asked those closest to me, “Are you angry?” because for reasons I cannot explain, I read many expressions as “anger.” The irony of all of this is that asking repeatedly if someone is angry leads to them being angry, which reinforces my concerns. I also am fighting feelings of paranoia and anger at strangers. It is very tempting to walk away from all of this to a quiet calm place that doesn’t actually exist.

I remember when we were dealing with my grandparents that had Alzheimer, and how our parents promised us that when their time came? They would not fight tooth and nail the same way. WELL see! LOL!

I know at least two of my grandparents were both very individualistic, and loved their independence. They were both successful business owners, and very intelligent. Its hard to watch the person you love start to lose the aspects that they cherished about themselves. It has to be very frustrating to realize how you must have help now. Their stubborn side of course did fight, but to be honest? I can't blame them at all. I won't say it wasn't frustrating from the other end okay? I can empathize I suppose would be a better way of putting it. I tried to place myself in their shoes, but I have to wonder if I do a very good job with my mother at times. Its much MUCH closer to home now.

I can feel my mother getting frustrated at the point during a conversation, and she can't quite seem to spit out what she is trying to get across. Its the nitty gritty details that she can't seem to vocalize anymore. I wrote about the 'big screen on the wall' my mother had mentioned.

She was referring to her television, and the 'wall' part confused me completely. YES she has a flat screen tv, but its not on the wall. Its sits on a television stand. Another clue would have been mentioning shows she watched or couldn't watch, or having problems turning it on or off. I could tell she was frustrated with me, but I was trying as hard as I could. She told me at first it had nothing to do with television, and come to find out? THAT is what she was talking about.

Sometimes I wonder if I give to much detail, or maybe not enough. I suppose I could try being more firm, when I think I know what she is talking about. If she goes along with that? Sigh. I don't know.

The dementia patient I referenced above questions if people are angry with her. I guess for me? It would be the opposite. I'm hoping my mother isn't angry with me when I truly have problems understanding what she wants to say. I try to approach her in ways that I hope helps keep her dignity.

Damn Dementia. There is enough frustration to around. I hope to learn a calming frustration trait that works for both us.

Here is a tickle I found today. I try not water WEEDS!

Dementia and the Remote Control

noreply@blogger.com (Hannah) — Tue, 30 Nov 2010 23:49:00 +0000

I noticed with conversations with my mother that she is struggling with her television remote. She has called AT& T a couple of times, because she felt there was something wrong with her service. It wasn't my mother's cable television, but my mother's dementia.

I did a google search for 'television remote dementia' or 'television remote Alzheimer', and I came up with a company called Flipper. I saw the ad originally on the Alzheimer's association website, but it wasn't really clear as HOW this remote could help my mother.

So I did another google search, and this time it was for 'flipper remote control'. Once I found their site there was a video that was started right away. I can't tell you the sigh of relief I had when I watched it. I wanted to share it with you today.

I ordered the remote, because I know her not being able to figure out the remote due to her dementia is a cause of embarrassment for her. She had come over to my house this weekend, because she couldn't figure out WHY her television was again not working right.

Dementia has to be very frustrating for her, because she just couldn't spit it out correctly for me to figure out what the problem was right away. She kept speaking about the screen on the wall, and I know I first asked her if it was the television. She told it was not, but by the end of the conversation? It turns out it was. My brother was over today at her home, and he reset the television for her. I hope my flipper remote comes in soon, so I can program this for her so she doesn't lose her ability to watch television when she wants to.

What seems nice is I can program her television and her cable box, and she will have to KNOW the code to change the settings. I think she saw the AT&T serviceman working on the backside of her television, and I will have to remind to NOT touch that part! I figured I will tape a post it note on those buttons for the times in which she forgets.

The remote has limited buttons: 2 for volume, and 2 for channel selection, and one for power.

WISH me luck with our new adventure when it comes to TELEVISION and my mother with dementia!

Dementia and the Medication Routine

noreply@blogger.com (Hannah) — Mon, 29 Nov 2010 23:56:00 +0000

Medicine organizer

My mother's doctor office called me about a month ago, because they were concerned about her thyroid levels. They were concerned that she was not taking her medicine on a regular basis, and asked for me to check up on her.

We all know that memory loss is part of the dementia process, and I made sure mother's medicine was up to date. My next move was to figure out HOW I was going to make this process even easier for her.

I started by calling the local mom and pop pharmacies in the area. I had heard about a service smaller pharmacies had for their clients with dementia like my mother. They come to the house once a week with those Sunday - Saturday pill boxes. They actually 'prefill' the weekly boxes, and when a refill is needed they take care of that as well. I found one close to my mother's house that was willing to do this. She would no longer have to keep up with her medicines, nor have to worry about refills.

I spoke with the Pharmacy staff, and made sure they were aware of her circumstance. It was nice to find out that this pharmacy worked with my mother's doctor's office all the time. I also found out that they use him for their medical needs as well.

I had called all the major chains in the area, and I knew my mother normally got her medicine from our local Jewel-Osco. They didn't deliver, and nor did they fill the weekly medicine containers. I would recommend looking for a small family owned pharmacy for a more personal touch.

My mother gets her medicine delivered every Thursday morning. We setup her billing information, and we also left our contact in case her medicine box isn't empty.

What a relief having a medicine delivery service for my mother the Dementia Patient. I no longer have to worry about her NOT taking it, taking to much medicine, or in her case to little.

Dementia and the ordinary clock

noreply@blogger.com (Hannah) — Sun, 28 Nov 2010 15:00:00 +0000

In our area we have to change the clocks back in the winter time, and move them forward in the summer. I always remember it by 'spring ahead, fall behind' because it always lined up so well doesn't it? I found that it doesn't make as much sense to the dementia patient.

I had come to visit my mother to discuss her medication delivery service that I had found for her. I played that service up to her stating it will be nice especially in the extreme cold or hot weather. She will not have to leave the house, and never have to worry about refills again. I was glad that she actually appreciated it, and we have found it does very well for her.

Traditional Clock

The weekend that was coming up was clock changing season. Since it was fall we need to move the clock back an hour. My mother handed me the traditional clock she had on the wall, and was asking me questions on how to move it back an hour. It seemed pretty plain to me that she had lost the capability to do this.

I volunteered to move all her clocks back for her that were in house while I was there. You could tell by her sigh of relief, and by how thankful she was when I did this for her. I found that she only had two clocks in the house.

The next day I received a phone call from my mother telling me all her clocks were wrong. How she had spoken to someone, but I never did get a clear answer as to whom - that stated her clocks were wrong. She asked if she could come over, and show me the problem.

When my mother arrived she had a bag with her two traditional clocks, and her ordinary calendar from her wall. If you ever look at the reminders on those calendars? They tell you when the time is for the 'official' change, and my mother's calendar stated something like 2:50 AM in the morning. If I were guessing I would assume whomever she spoke to mentioned the reminder on the calendar. What I don't think they realized was they were speaking to a dementia patient.

My mother wanted me to fix the clock so that the hands would stay at the number 11 or :50. Then make the other hands to the clock move as they should. How her clocks must be broken. I will tell you it took some time at first to figure out WHAT she was talking about, and that is the conclusion I came up with.

I then asked her to tell me the time that was represented on the clock itself - AS IT! It was clear to me that the dementia had robbed my mother of being able to read the clock. I then went up to our bedroom, and grabbed our digital alarm clock. I came back downstairs with it, and plugged the clock in. I asked her again to read that clock, and she didn't have an issue with that one. She told me right away what the clock read.

At that point, I placed a new back up battery in the digital clock. I asked her if she a regular time she set her alarm for in the morning. I figured I would set that as we spoke. I wrote her a note to remind her how to turn on/off the alarm, and taped it to the bottom of the clock. That was the best I could do at that point, and I realized I would have to look into better options for the future.

I told my mother that the battery I placed in the clock was for the times when the electricity goes out. How the clock will stay set, and will display the correct time once the electricity comes back on. It will be nice, because she won't lose the time nor she have to reset it. You could see the relief on her face. I told her to place that clock in her bag, and when she got home find a place near where she had the other clock to plug it in.

She called me when she got home, and plugged the clock into the wall. She told me what time it was. I told her she was SET TO GO, and asked her again if the clock was easier for her to read? She was almost giddy with her YES response.

Dementia Clock

Since I realize I needed to figure out a 'clock' solution for my mother? I went again to google 'Alzheimer clock' or 'dementia clock'. To my surprise they listed loads of traditional ones. Heck, I even found an article stating the traditional clocks are easier to read for dementia patients.

I found most clocks they recommended had a large digital section for the calendar (month, day, date), but had a traditional clock along side of the calendar. It confused me because the only thing I saw truly helpful was the large print for the information to make it easy to read. My mother's sight wasn't the issue, but her dementia was.

I don't know if my mother is different than most, but traditional clocks confuse her. That is what I learned from my mother's journey with Dementia. At this point I want to find a second clock for her, and SURE large print is important! I have found in my journey so far that something along these lines are going to cost me an arm and leg to get. So I will continue to search.

I do want to find a clock with a calendar and the time, but they both have to be digital. Heck it would be great if you can program it to change with the seasons, but I don't know if that is possible. I know I will be coming to mother's house each time the season changes anyway to make sure I change the backup battery.

What I learned? Find what works for our particular circumstance. Traditional Clocks are NOT going to work for my mother with dementia. I found she is put at ease with the digital. WHO KNEW!