A Walk in My Shoes

Moving Day

2012-11-05T06:19:00.001-06:00

So.
Today is a big day, moving day. We had to face the fact that Mom wasn’t adjusting to the caregiver. There were too many phone calls pleading for help. She was too angry, too often. She was not herself, not that she’s been herself for a long time...

We found a memory care assisted living facility not too far away. In fact, it’s half way to one of my sister’s house which makes it easy for her to visit and connect. It is similar to other places we’ve seen, except that it has only two floors (like a BIG house) both dedicated to memory care. BUT the best part is a family friend of my brother lives there. Actually, it’s one of my niece’s best friends. Amazing, this young woman I knew as a goofy neighbor kid is now our best resource for helping my mom. I am filled with peace! We’ve looked at places before, which have many similarities, but there’s some detail that sticks out to make it right or wrong. Our detail is Amanda. I think God know how hard this would be for me - maybe others in my family. His ability to take into account my needs as well as my mother’s needs is mind blowing. I trust Amanda to care for our family like her own and therefore trust my mom will be well care for. She won’t be directly looking out for my mom, but if she works there, it must be good. Not to mention that my mom will have her own apartment without a roommate, space for herself, but whenever she wants to be social, she can walk out her door and people will be there. It seems like a good fit for her at this time in her life.

I decided recently my goal for helping my mother would be to make my dad proud and have no regrets. I don’t want to look back and I think I should have tried something else. So far, so good. I have been blessed with wonderful brothers and sisters. I think that we have worked well together and have been mostly in agreement in regards to my mother’s care. We have held meetings just to make sure we are all on the same page. I’m not sure we’ve actually had many disagreements, but everyone has spoken their mind and we are able to come to a plan. We’ve been able to keep my mom’s needs first which has brought us to the same conclusions. Our practical, cohesive approach would make my dad proud. And we’ve stayed by my mom’s side so I think he would be pleased. I often think how much easier it would have been for my mom if my dad were still around! Ah well!

I was anxious last week but now I am hopeful and peaceful. I know there are kind friends praying for me and while I still don’t understand how the prayers of others affect my life, I know they do. I don’t know how my car runs, but I know it gets me where I need to go!

Finally, a good day!

2012-09-27T15:48:00.000-05:00

Today was a good day! I realize it's only 2:24 PM but it's checked off in my mind as "good."

My mom is still struggling with her caregivers. She doesn't "need" anyone there, she tells me. She flashes her anger at me frequently and when the phone rings at 4 PM, I know it's her...confused, sad and feeling useless. She can't find her parents, she can't find my dad...the phone must not be working...she probably doesn't have any money left...

But not today - ok, not yet, anyway. Today was a good day. It started a couple days ago when I sent an email to the staff at my church. "Does anyone need some help? My mom needs a purpose." I received my first response within 5 minutes from Michelle, the Children's Director, who, of course, always has things to cut and staple for Sunday. But her heart was really for my mom. While I'm sure she would appreciate someone helping her prepare for her classrooms for Sunday, there's a chance my mom might not actually be any help, especially if everything we do needs to be redone! But Michelle put my needs, my mom's needs, before her own and we arranged to come in today to volunteer. Her compassion towards us made me cry, but then every kind gesture towards my mom does! But Michelle was not the only staff member that was willing to extend themselves! Others responded quickly as well, but since they don't often have stickers to stick or toys to organize, they asked for some time to think of something. It might seem odd to hunt for a project for an 86 year old woman to do, but not to these people. They understand that everyone has value and can contribute. Maybe it's like the woman so long ago who put 2 coins in the offering, giving what she had, whom Jesus held up as an example to all of us, giving her value. That story is found in Mark 12 and Luke 21- and I realize that really wasn't the point of Jesus' story but it makes sense in my head! Anyway, these are people who love God and love people and for whom I am eternally grateful.

So today was our day to help Michelle. My mom and I stapled and organized papers into folders. Then, we helped organize the monthly "store" for children's ministry, putting like things together in bags and boxes. It went really well and my mom was a big help. It was mutually beneficial, which was really my goal all along. We went to lunch afterwards and there was NO anger whatsoever even though she was quite tired. I just think it was a good tired! Amazing. Now, was it because her caregiver wasn't present? I don't know, maybe the combo of having a purpose and some space agreed with my mom today or made my mom agreeable. It doesn't matter because it was a good day!

Forgiven

2012-07-28T09:40:00.001-05:00

My daughter Erin loves my blog - my biggest fan! When something happens, she tells me to go blog about it. She likes to hear what I've learned or how I'm processing what is happening. Funny thing is, she could easily walk down the stairs and ask me! She must like reading...maybe she gets into my head or something! I don't know, but this one's for you, sweetheart...

I haven't seen my mother in a week. I can't remember the last time that happened! I have spoken to her, sometimes multiple times per day, but I have not been in her presence for an entire week. Having hired a live-in caretaker, I've made myself scarce to encourage bonding. My brothers and sister have still seen her as they regularly do, just not me. It has been a very long process for Mom and she is not adjusting well. She wants to be alone. In fact, I think the stress and changes have caused her to decline in her cognitive abilities but I am hopeful that once she is settled, she will do better. I am hopeful. And I am hopeful that switching caretakers will help mom settle. I am hopeful. And yesterday when we spoke on the phone, my mom seemed enthusiastic and energetic. I was hopeful about having lunch and going shopping together...since I hadn't seen her in a week.

Erin came with me. And when we arrived my mom was happy to see us and ready for lunch. I quickly asked about groceries and was looking over mom's list. I had a couple questions about what things were. It's better to check at home when I can see what she needs than at the store when I have no idea. She quickly got defensive when she couldn't understand what she had written, "Cleansing soap". I didn't know if that meant bath soap or cleanser for the sink...and she didn't either. She yelled at me, "You make me feel so dumb!", whacked me on the arm and walked to another room. "You all just go without me!" she said. She actually hit me! Of course, it didn't hurt at all, but I could feel the full force of her anger. The three of us, Erin, Claire (the new caretaker) and I just stood there in shock. I am not even sure my mom made it all the way back to her bedroom before she came out apologizing - 30 seconds tops! She said she has been so anxious and didn't mean to take it out on me and of course, I said I completely understand...all is forgiven.

We gathered our stuff to leave, making sure we were ready for the store as well. We walked down to lunch with my mom apologizing, saying she's so embarrassed, quite frequently. I was pretty quiet, surprised at how sad and overwhelmed I had become. By the time we got to the lunch room I was in tears and headed off to the washroom. It's not that my mom hurt me or was angry with me. I was so sad once again at what she has to go through and that she couldn't forgive herself for a lapse in control. Finally, Erin came in saying Grandma is "freaking out" because you are in here crying. I have to admit, I was surprised she had put it all together! I went out and hugged my mom again and tried to reassure her again that I was ok and that I forgave her - I just had a delayed reaction. I told her I loved her. It was ok, really.

We ordered lunch and went outside to the patio to wait. Again my mom was remorseful and apparently, unforgiven. It was crushing me. She decided to pray for lunch and it sounded more like a plea for forgiveness! Finally, I reminded Mom about the cross. Jesus went to the cross to make payment for our sins, our past, present and future sins. We don't need to live in the guilt. It is done. We are free to live in the grace of God...At. All. Times. Not sure I said all that, but it is true. She got angry, she apologized...what more was there to do? Jesus took care of it all. Not sure MY words were the salve, but she seemed to let it all go then. I suspect that coming to God in prayer was where her peace came from.

Me, not so much. I was quite drained and emotional for much of the afternoon. I am so tired of seeing my mom go through the horror of this disease. She asked me once what she did wrong to get this? My unspoken response: You lived too long. It is so completely hard to understand why sometimes. I was reminded at church recently that this is not the way it was supposed to be. BUT, this is all very temporary and someday, in heaven, all creation will be perfect. Perfect trees. Perfect relationships. Perfect minds. I have told myself that many times...this is temporary...this too will pass...

And it is encouraging. Although, sometimes, it takes an eternity to get there. How ironic is that?

Romans 8: 20-23
Against its will, all creation was subjected to God's curse. But with eager hope, the creation looks forward to the day when it will join God's children in glorious freedom from death and decay. For we know that all creation has been groaning as in the pains of childbirth right up to the present time. And we believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering.

It can't be all bad...

2012-07-12T08:29:00.003-05:00

It's difficult to imagine anything good watching someone decline in their mental capabilities but God is faithful. He brings good out of pain - I think it's his specialty! Check it out:
Recently, my mom was waiting for us to pray before we ate lunch. I asked her to pray...

Without hesitation, she thanked God for our food and petitioned him on our behalf. The sort of prayer she had prayed over meals for as long as I remember. But there was something so warm in her voice, such an ease and comfort level that I no longer see in regular conversation, where she struggles for words, thoughts, and ideas. It reminded me that my mom is a woman of prayer and devotion to God. Although her actions have always pointed to her faith, my mom has never been very vocal about it. She lives he devoted life going to church and serving others in small ways that have big impact. She is not a vocal evangelist, by any means. But I think she has always been a big pray-er. I remember a particularly difficult time in my life, I had made some really bad choices and my mom, who really didn't know what to say to me, disappointed in me as she was, just simply prayed. Never before had that happened and not really since, but it showed me the reality of her faith in a powerful, loving God. When she prayed over lunch that day, I was drawn back to that moment when I learned my mom prays and believes. These are lessons I will hold to dearly. God loves my mom and will continue to protect her and guide her even by means that she won't always like. He will do what is best. It is evident that God will never leave her alone, this dear woman who has prayed and loved him since she was a little girl, who did cartwheels when she first met Jesus.

"The earnest prayer of a righteous person has great power and produces wonderful results" James 5:16

Bittersweet

2012-07-12T07:33:00.000-05:00

To every beginning, there is an end. In general, I get excited for change. I love when people get married, move, get a new job, have children, on and on. I love the anticipation and excitement of beginnings. The problem is that to every beginning, there is an end to something. I often forget how difficult an ending can be. Sometimes it's benign and you barely notice. I buy new walking shoes, I throw out the old ones. (Actually, they become my work/garden shoes and then I throw out my old garden shoes...not really worth mentioning but...). Other times, change is big and the "end" part is also big: We hired a live-in caretaker for my mother. After looking for months at facilities to which she could move, we decided to keep her in her current condo but have someone move it to help her. We've considered many options and this seemed to be the best solution. It's a wonderful beginning...to something...

Some of us think this is a great solution while some think this is a horrible solution. Okay, one of us thinks this is horrible...my mom. My mom is a pleasant, easy going lady who shows great restraint. She welcomes people and is warm and kind. When I brought the helper, Lily, to my mom's home the first day, my mom was, of course, very nice. But every time Lily was out of sight my mom would tell me she is not comfortable with this plan. Even when Lily would simply turn her back, my mom would mouth to me "I don't like this!" My mom put up with it that first day, but the second day I got quite a few phone calls about that helper I sent over. "She's very nice and helpful BUT..." My mom doesn't understand that she is very much in need of a helper, that it is not safe for her to be alone. She called me secretly from her bedroom where I think she was hiding out, desperately asking me for help. And when I wouldn't comply, she would hang up on me. My mother has never spoken harshly to me, let alone hung up on me. I was determined not to let it get to me, that this was what was best for her, but after our fourth conversation, that was challenging. She is so sad and it makes me sad. While my siblings and I look at this new beginning with great hope, optimism and incredible peace, my mom is desperate, trapped and alone. It seals the end of her independence. She has slowly lost some independence before but now she has lost her freedom to be alone. Her home is gone, her husband is gone, her car is gone and now her freedom. If only she would understand our reasoning and explanations...Ah, but that is why we are here. Understanding, comprehension and remembering are her challenges.

The truth is, this is neither the beginning nor the end. It is just part of the journey. It IS a BIG relief to us kids, in spite of my mother's angst and anger. But we have prayed for wisdom and I know God loves to honor that request. He has patiently protected my mom as my siblings and I have sought Him to know what to do for her. I am confident that what we are doing is right and I am encouraged by Psalm 37:5: "Commit everything you do to the Lord. Trust him, and he will help you." He hasn't failed us yet so we shall continue to seek and trust him!

The bored lady at The Iron Lady

2012-03-24T16:32:00.000-05:00

Saturdays are long, difficult days for my mom. She spends most of them alone, in her condo. I have been more conscious of going over to see her on Saturdays, even though it requires a bit more than I have in me. Last week, my daughter needed something at the store so we picked up Mom and she tagged along. It gets her out and if it's only for an hour, at least it's something!

Today, I decided to go to a movie. I've been looking at what is out lately and haven't seen much that would be appropriate for my mom. But I saw that "The Iron Lady" was playing today and thought that might work. I know little about movies, but I did know this movie was about Margaret Thatcher and that Meryl Streep won an Oscar for it. Being that it is based on an actual person that my mom might remember, I took a chance at this being a movie Mom would enjoy. WRONG! She was falling asleep at the beginning and about 3/4 of the way through she was asking me what time it was. Apparently, knowing who the actors are is an important element in my mother's enjoyment of the film. She didn't recognize them, i.e. Meryl Streep, so she didn't like it. Also, she couldn't follow the story line (more on that in moment) and didn't remember Margaret Thatcher. Personally, I think it was the popcorn. I offered to get snacks at the concession stand and she declined. First time ever, I think! Maybe if we had had popcorn, she would have liked the movie. All in all, she was bored.

I, on the other hand, enjoyed the movie. I especially like movies based on reality, except when they alter reality - that ticks me off! Since I know nothing about Margaret Thatcher, it was all truth to me and it was all good! Interesting lady - I may have to read up on her. Anyway, the movie depicts an old Margaret suffering some sort of dementia looking back at her life while talking with her dead husband. There was a scene in which her daughter, Carol, is telling Margaret that she is not the Prime Minister anymore, Dad is dead and Mark, her son, is in South Africa - much like conversations I have with my own mother. (I frequently tell her she is not the Prime Minister anymore...). I could contain all but a few tears that managed run down my cheek. I didn't know I was going to be hit with this dementia thing again. So much for movies being an escape! But Margaret's struggle in the movie to remain in reality gave me some sense of what may happen in my mother's head. And I think that is why she didn't enjoy the movie. It jumped from current reality to past to certain unreality. My mom couldn't keep up, I suppose. I was a bit sad that Mom didn't get it. Why would I think that she would be able to relate her current situation with what appeared on the big screen before her? It was clear to me. But then, that is my constant struggle of late - what is clear to me is not clear to Mom. It's my job to help her see as best she can. It requires some patience and finesse. I'm growing in these areas, but then the parameters change and I have to learn them all again. Maybe that's why I have a headache right now...

Oh, well. It was a good movie. Margaret talks to her dead husband, my mom talks to her dead husband...it certainly depicts a love that never ends and THAT is quite beautiful and a very clear reality.

2012-01-31T21:25:00.002-06:00

We went away this past weekend for a family wedding. It was a wonderful, fun event and a great escape from the realities of life. We decided my mom couldn't make the trip and her friend graciously volunteered to stay with her while the whole family was out of town. My mom has incredible friends and it gave us all great peace of mind.

But reality hit hard upon my return Sunday afternoon. My mom left me 5 messages, wondering what was going on. And when she can't get hold of me, she thinks something is wrong with her phone. I believe she was also trying to call my dad, which would be her own number. It must just ring and ring, and perhaps beep and beep in her ear, since she has call waiting. Of course, I called her. She actually seemed fine. I was surprised when her friend called me a couple hours later, asking if I had talked with my mom. She was worried because my mother had seemed so confused. She had essentially stayed with Mom for 24 WHOLE hours, which I hadn't expected her to do. She saw first hand how confused my mom gets and it was unsettling. I told her Mom seemed ok when we had talked and she was relieved.

Later on, Mom called looking for the kids, wanting to go home and/or wondering about Dad. I can no longer remember one conversation from another anymore. I just remembered her being confused and needing to be calmed. I moved her along towards going to bed. I made her lock the door while I was on the phone because somehow I think that will keep her from leaving! It's not logical, but it makes me think I've got it all under control! She seemed ok again when we said goodbye.

On Monday, I called Mom to get her insurance information from her over the phone. Immediately, she launched into how itchy her skin is and we spent 10 minutes trying to locate her medicated lotion to no avail, but she found something else to help in the meantime. I finally got to ask about the insurance information and she couldn't find that either. I know her card is looking back at her from the wallet, but she couldn't see it. I gave up and said I'll be right over. She promptly called me right back to say she found the lotion in the kitchen right where it's supposed to be. Ugh! But I still have no insurance info so I take off for Mom's, help her apply the lotion, find the insurance stuff and call it in so she can go to physical therapy in the afternoon. Whew! A five minute job that took an hour. Reality is rough, I conclude. And when I went home and looked at photo's from the wedding on Facebook, a great longing to return to my escape arose!

But I soldier on and took Mom to physical therapy later that day; she did well. A very kind friend of mine from church is taking care of her so I'm sure physical therapy will be a good outing for my mom and hopefully will help her shoulder feel better as well. I ran to the grocery store while she was there and when I returned Mom was in her coat, ready to go. I felt grateful to be going home, to relax with my family.

Then Mom calls during dinner because she can't figure out where everyone is! I explained, not for the first time, that she lives alone and she replies "You keep saying that!" Ha! It's kinda funny when she comes back with a comment like that! Anyway, she seems quite confused and I reset reality for her. I know I'll call her later and I begin to wonder if I'll be going over there sometime soon.

When I called her at 7 PM, she was about to go downstairs, which where she lives, is the lobby. She wanted to mail a card to her neighbor across the hall who is in the hospital. Of course, it's not labeled correctly and will never arrive, if left alone. I convinced her to leave the card until tomorrow when I would be able to help her. But she was pretty set to wander around. She thought my dad was downstairs somewhere. "How about I come over and walk with you, Mom?" I heard it come out of my mouth. This would be my third trip there as well as my fifth phone call today. I can't keep us this pace.

We walked around her condo commons area for a bit - not much going on this day. I helped her get the card ready to mail. Thankfully, it needed a new envelope and I noticed inside that she signed it "Fran and Phil". We redid the whole thing. I helped her with her lotion again. But, I must say, I left feeling more at peace than when I drove over. I know I did the right thing and Mom seemed settled.

After I got home, I was talking with my husband, my sounding board, my incredible support...I am doing all I can, but I know my limits and they aren't big. I realize there are many who would do so much more in these instances, like either one of my sisters, probably. I find it interesting that I'm in the role I am in. While I can be a people pleaser, setting boundaries and margins is instinctive to me and I couldn't survive without them. Any self respecting people pleaser knows no bounds! Clearly that's not me. And while we're at it, I'm not even very task oriented so I don't necessarily accomplish a lot on my mom's behalf. I make sure she has food and is safe; all my other plans dissolve as I become tired and stressed.

My husband agrees that someone else could/would probably do more. I am not insulted; he knows me well and he knows I am doing all that I can, even at times more than I can. I am being stretched beyond my limits, I guess. And he goes there with me, every step. He is amazing, a gift...

What is significant about this revelation, this understanding of who I am, is that when I understand what I can do on my own, when I know my limits, and then actually do MORE...well, I know the "more" is God. I am confident about this role, however ill-fitted, that it is just where I am supposed to be.

2 Corinthians 12:8-10
Three different times I begged the Lord to take it away. Each time he said,“My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong.

Cruelty

2012-01-22T20:15:00.000-06:00

It's just plain cruel...
My mom called me this evening quite confused. First of all, her phone wasn't working - yea, I know she CALLED me but I guess her neighbor WAS helping her. She's been trying to call my dad but his number didn't work. She's calling her own number...I asked if she wanted me to come over and she said yes.

I was trying to watch "Diners, Drive-ins and Dives" with her, but she kept talking about the trouble she had earlier. She told me Dad had been in the kitchen and she told him they could have chili for dinner. But then he was gone. She went back to the kitchen a few minutes later and he was gone. As she told me the story, I could, for a moment, picture my dad in her kitchen. What joy and certain relief she must have felt to be with him again.

And that was when the cruelty of it all struck me... along with everything else, she loses my dad over and over again.

But I guess if you look for it, there is always something beautiful. After we discussed that dad was gone, Mom told me she knew Dad was waiting for her in heaven. It was such a simple and beautiful statement of faith, not only in God but in eternal life provided through faith in Jesus. It's truth she has known since she was a young girl. So in the midst of all the cruelty, I'll hold on to the beautiful.

Arise

2011-12-13T11:24:00.000-06:00

I've noticed many songs recently with the words "rise from the ashes". I couldn't find a scripture reference from my brief search, but it is an intriguing notion to me. Ashes make me think of a fire, burning, burnt, death - to arise from that seems pretty remarkable. And yet, that is how I feel lately. Life has been hard and it has promised more of the same. The road I am currently on is very difficult and I often don't want to be here. But I am given these spurts of strength and energy; hope seems to well up inside me and I feel like I am rising from the ashes. Granted, it's not too long before I'm sucked back down into the fire, but there is that "moment"...

Recently, I remembered a poem I had written millions of years ago - ha! Life was hard then too but Jesus promised me He would never leave me to walk it alone. Amazingly, those very words have brought me comfort again. I thought I would share it here, for this is where I'm at in dealing with my mom. She remains a tower of strength in my eyes, although, she is clearly declining in my midst.

ARISE

"Arise, pick up your pallet and walk”

But with each step I tire and long to lay me down again, near the pool…lying sick, helpless

Waiting for your healing

And you come now saying “Walk”

But life seems to drain from me as I take a few steps; my heart empties onto the street

But still you come, saying “Walk”

Before my knees buckle and I plunge face first into reality,

Stand with me, Lord

Please hold my hand

And when you think I’m able,

Lead me, Lord, down your path

Until someday, one day, when I can walk on my own two feet

Even Though

2011-08-02T11:01:00.000-05:00

I have been working my new "job" for just over a month. I have learned a lot...

1. It's exhausting! I wouldn't have thought that a couple hours a day would zap my energy supply so much. There is an emotional toll that is steeper than I thought, a "moving slowly through tasks" toll that is also draining, and an boredom toll - this is not an exciting job. BUT I AM NOT COMPLAINING! No, definitely not complaining. A bit surprised but I am growing in acceptance and i have developed a major appreciation for caretakers. I remind myself that I want to give her what she gave me growing up which is care and grace. It is truly a privilege to walk this path with my mom. I am also grateful that the financial barriers to me helping her have been removed. God is a great provider and I trust that He will also provide me strength!

2. To keep the big picture in mind. Mom is constantly "organizing" her condo which means I need to go back through and put things back where they make sense. I have gotten over the idea that it is her house and she should be able to do what she wants. I know what she wants and that is to be able to find things! Therefore, they need to be in their correct place. That's the Big Picture. She gets flustered when she can't find what she is looking for. Today, for example, she is looking for her dirty laundry. She is sure she has some, just doesn't know where she might have put it. If I think about it too long, I cry. How hard it is to live in her world. But she pushes on and she is my hero for that. So I will focus on what the big picture is, what I know my mom would have been done in the past, what she is really trying to accomplish.

3. Lucid to irrational moments happen without warning. She recently told me that she wasn't prepared for Alzheimer's. She had considered cancer, heart disease or stroke as as health issues but not this. (Which actually surprised me because her brother had some sort of dementia, I think!) We can have these moments of truth and deep reflection. But then, wasn't it 20 minutes earlier that she was wondering how she would get home? I was confused. It turns out she thought we were in Michigan and, apparently, I wouldn't be driving her all the way back to Illinois. Where did that come from? As I spend time with her, I experience these movements from the rational to irrational with her. I am learning to just go with it, to be patient and kind. Yes, I see patience developing in me. And who says miracles can't happen!

4. Caretakers guilt. This is real and this is huge! I do better than many people I know at setting up boundaries. Certainly, I could improve but it hasn't been an issue until now. I am surprised at the amount of guilt I feel when I leave my mom or worse don't go on a day! I know that my plan is to go M-F, but I feel badly when I don't go on Saturday or Sunday. Not nearly as bad as when I can't seem to get there on a day during the week, but a bit guilty, nonetheless. She is always grateful and somewhat surprised when I show up. This guilt does not stem from her in any way. But the more I go over there, the more I realize she has so little to do on any given day, she is so dependent on others to do anything and sometimes she get confused or forgets her plans and then misses them. I feel guilty because I am able to do whatever I intend to do and she no longer can. It's irrational, I know. So I acknowledge the feelings, pray for God's peace and move on. But the feelings lurk near by and I'm always aware of their presence. I guess it adds to my fatigue!

But still, I am grateful for it all. I think of Habakkuk 3:17-19...

Even though the fig trees have no blossoms,
and there are no grapes on the vines;
even though the olive crop fails,
and the fields lie empty and barren;
even though the flocks die in the fields,
and the cattle barns are empty,
yet I will rejoice in the Lord!
I will be joyful in the God of my salvation!
The Sovereign Lord is my strength!
He makes me as surefooted as a deer,
able to tread upon the heights.

So every now and then I say "Even though" and that is usually all it takes to remind me of all that God has done, is doing and will do in my life. And then, I rejoice in Him!

It's official!

2011-06-24T06:31:00.000-05:00

I am working for my mom! We decided as a family that my mom might need a bit more care and since I am currently unemployed, I get the job! I am excited. My plan it to go over Monday through Friday to manage her household and life. As I organize cabinets, I see plastic milk caps saved and glasses migrating over to the plate shelf. Most of the stuff in the kitchen isn't used anymore, so it's just a odd piece here and there.

But her mail and the papers she saves is a daunting task we will start working on today! I am appalled at the written pleas for money that my mom receives. It make me angry, actually. There is no sentiment untried or scare tactic unused to procure funds for the "never been more important than now" project. After all, they did send a necklace, "took a chance" on sending a prepaid envelope and all the while you may be losing out on money or the government may cut your pension! She must get 5 a day. Just glad we can help filter it all (right into the garbage can!). But she always asks, "Are you sure?" Why is this goofy letter more convincing than me? Guess I need to learn a few scare tactics of my own!

Evaluation results

2011-05-25T15:53:00.001-05:00

So I wandered back to meet with Mom and the doctor. Yes, she has declined but how much - there isn't a number to put on it. I understand that there is no need for further "evaluation". What we see her managing day to day will give us more information than a series of tests. I left with this:

Mom needs to get out of the apartment every day. Interacting with people helps her significantly.
Her routine is holding her world together.
We might want to unplug the stove. Mom doesn't know how to call the police...

I was actually encouraged today. In comparison to leaving that office 2 years ago, I was elated! It sounds like we have managed Mom's life well and we will just continue to watch over her. She may confuse night with day and start calling people! Yikes! But I feel confident that we will catch her before she falls...

Funny thing: The doctor was asking about moving to the apartment and driving etc. I said we moved Mom because she, the doctor, told us to, and we had Mom stop driving because she had told us that too. The doctor put her hand to her chest and said "Someone listened to me!". It was a very human, kinda sweet, moment!

Truth

2011-05-25T13:59:00.002-05:00

I have planted myself at Barnes and Noble, free wifi, expensive chai. I just dropped Mom off at the neuropsychologist for an evaluation. We were here two years ago only to find out she has Alzheimer's. Now, I'm trying to understand where we are at with it all two years later.

I hate these evaluations. I feel so protective of my mom! The doctor asks her simple questions that she can't answer correctly. It's all I can do not to say "Of course she knows her birth date!" Between having memory issues and feeling cornered, my mom doesn't have a chance! But I remain quiet until needed. The last thing I want to do is impede her evaluation - I need to know the truth.

Now truth, that's a funny business. I have always clung to truth, striving to be truthful, authentic, and honest. I love the truth. Until recently, when I found out that I really don't love the truth. The truth is messy. People aren't who you thought they were, situations don't pan out as promised, the future looks a bit more uncertain. Even though I hang out around truth as often as possible, life doesn't cooperate. But in reality, I've gotten just what I asked for! What I REALLY need is a way to handle the truth (flash to Jack Nicholson: "You can't handle the truth!"). Truth be told, I don't want to handle anything. Somewhere along the way, I became so enamored of Jesus, that I wanted to be like Him. "Transform me, Lord!" I thought transformation meant I become like Him, but really it means I become like Him. It's the becoming part that is so challenging, so painful. Mom is part of that transformation process and so is truth. The truth about Mom, the truth about everything.

Well, I better go. The truth awaits...

Autopilot

2011-05-13T13:42:00.003-05:00

I spoke with my mom briefly this morning. She called to tell me an old friend had written her a note and promptly read it all to me. At the end, she said ‘It was good to talk with her, she hasn’t changed at all”. Of course, I needed clarification “Did you talk with her or did she just send a letter?” Yea, it was just the letter. Now, my husband, Dan, would have just let it go and agreed with her. Why make her feel bad, he would say. But I can’t disregard her in that way. I want as real a relationship as I can with her, and agreeing with everything would be false. While I accept without comment repeated conversations, I need to understand what she is actually experiencing and what she means when she speaks. Which is why I ask for clarification at times, which is why I appreciate it when my sister calls to tell me about her conversations with Mom. For instance, she called, saying something like: “I told Mom that Jeff (her son) is moving to Oregon. I thought I should call you right away in case she tells you and you think she’s mixed up”. Then, we’re on the same page! I guess it’s like a preview to a movie so I know where the plot it supposed to go. I find I can be more helpful to my mom if I know where we are going.

I marveled at two simple things today:

Armed with the information right in front of her (that she probably read a couple times) my mom doesn’t sound like she has dementia at all! Words, names, dates are literally at her fingertips and she pulls it off well.
I am amazed the brain can go on autopilot! After she said she had “talked” with her friend, I realized she didn’t even know what she was saying! It just flowed like water out of the faucet – she has said it so many times before! And I catch myself on autopilot: “Let’s get together for coffee!” I don’t even drink coffee! Do I actually “intend” to get together with that person? The Bible is clear about how difficult it is to tame the tongue and yet how important it is as well. What we say reveals what is in our hearts. Even my thoughtless invitation says something about me: liar, phony, trying to please people…? Ok, maybe that’s a bit harsh but I can’t help but analyze myself through my interactions with my mom! Clearly, I do not expect my mom to have the control over what she says and thinks that she once had. But consider me? I can still reign in my thoughts and words, as long as I stay out of autopilot. But autopilot is so much easier and I default to easy often! God has certainly been teaching me about myself though these hard lessons. And lately the hard lessons have been piling up. So, honestly, sometimes my only solace is that I have, in fact, learned something. I guess that’s why I started writing here…so I would remember all that I learned. While the road before me remains unclear, uncharted, unseen, what lies behind me, is quite clear indeed.

The Aldi Adventure

2011-05-02T14:32:00.000-05:00

Who knew the Aldi store could be such an adventure? The need of a quarter for your cart, your own bags for your groceries (unless you buy bags) and the cash only (I guess you can now use debit cards, which I don't have) all made this shopping excursion a bit much for my mom today. We talked about what to expect a couple times, each time being the first she had heard it, of course. She gathered some items for her cart and continued shopping while I went through the check out line with my groceries. Then I saw her in line with only a box of cereal! She had put everything back because she was worried she didn't have enough money with her and couldn't find her debit card. I convinced her to go through the store again, that I could cover her groceries if need be and she could pay me back. After all, this was why we were out today - to get groceries! She got 3 more items and had the cash to cover it. We won't be going there again! She doesn't need to shop there and it's not worth the angst it brings her.

Corners

2011-04-28T10:09:00.000-05:00

I feel like we are turning a bad corner and I am realizing that I know so little about what is ahead. Part of me really doesn't want to know - the anticipation of what is coming may be worse than what actually comes. The other part of me is realizing I need to be more prepared so I can be more helpful to my mom.

Mom called my sister the other day, wondering where she went. "After I stepped out, everyone was gone!", she said. The sad part is, no one had been there in the first place. Upon further talk, my sister decided that my mom had fallen asleep reading, awoken and was a bit dazed, thus confusing the book with real life. When my sister called me to tell me, we were both pretty convinced this was truth. So, of course, I called my mom and she seemed her "new" normal. Whew! But then she called me a hour and a half later wondering where my "boys" were. Are they coming back here to stay? Sometimes they do that, she said. Apparently, she was in the shower and when she got out everyone was gone. Again. I assured her that no one was coming back over, that she could lock her doors and go to sleep because no one was coming to visit her. She was relieved, but I was freaked.

There are plenty of odd conversations we have with my mom, but I'm often surprised at how well she manages. These episodes seem to be her first "hallucinations", which, thankfully, were fairly benign. She was easily calmed and reassured. What happens if she hallucinates something terrifying? Or perceives a danger and lashes out?

This is why my second part is realizing that my first part needs to be prepared, regardless of the dreaded anticipation of it all. I didn't know hallucinations were part of this disease, if that's even what they were. So I'm spending time at the Alzheimer's Association website: http://www.alz.org, in case you are interested and want some information. I'm reevaluating the doctor we see, thinking I need a geriatric specialist - that is such a thing, right?

Obviously, I should have been doing this sooner...

Lessons never spoken

2011-04-20T08:00:00.034-05:00

As I mentioned before, I have received numerous phone calls from my mom thanking me for the "poem" I wrote her. I suppose it's a poem, but it's really the song I sang to her at her party. My husband thinks it would be pretty cool to have someone encourage you daily. So, yes, I have my own personal cheerleader. And she is sincerely...sincere each time she calls. And since I know that she naturally is sincere and grateful, I try to fill my tank with it. Here is the song, in case you were interested:

Lessons Never Spoken

Verse 1

If I had to walk a mile in your shoes

I’d look back on life

See the many faces touched by you

Cuz your life seems to

Meet the needs of those around you

Sorrow and the joy surround you

Sacrifice so they would understand

Someone walked a mile in their shoes

Verse 2

If I ran the race that God made, just for you

I know that I would

Serve my family, friends and strangers too

Cuz your life seems to

Share a meal when someone’s hungry

Share your home when someone’s lonely

Share your wealth so they would understand

Jesus ran the race ahead of you

Bridge

Did you know I was even watchin’?

Did you know you were even teachin’?

Lessons caught that were never spoken

Shown in love

They were shown in love

Verse 3

If I had to see the world through your eyes

I know that I would

Look for fun and time would just fly by

Cuz your life seems to

Travel to exotic places

Share some thrills with friendly faces

All the while knowing God is showing you

How to see the world through His eyes

Jesus is ahead of you

He walked a mile in your shoe

More birthdays

2011-04-19T14:37:00.000-05:00

I went to a birthday party for my mom yesterday - different than the one we threw her a couple weeks ago! She called me up to say, "Did you know you were going to my birthday party today at 3?" My mind raced to my Itouch calendar, trying to remember this event, when she went on to explain, "I got this card in the mail that says there's a birthday party for me at the Village Grille downstairs, do you want to go with me? I meant to ask you before." Ok, so I didn't know about it - whew! I have to say, any forgetful moments I have, take my breath away - just a little too scary! Anyway, I went with Mom to her party. It was an "All April Birthdays" party at her facility, complete with the birthday song, cake, coffee, party placemats and photos wearing a birthday crown. Why anyone over 5 would want to wear a birthday crown, is beyond me, but I do know ladies who turned 50 that did the same thing - ??? We sat with a gentleman my mom did not know from another building and had a pleasant conversation. That it was a man, certainly seemed significant. I know she misses my dad immensely and I think she rather enjoyed talking to A MAN! I was glad I was there to help her with the conversation and I'm beginning to think startup conversations are easiest. I get very protective of my mother, hoping people will understand and be gracious, and somehow know she wasn't always like this! (I guess I'm still grieving some things!) Most people are, I am finding, especially her contemporaries. But what I like about startup conversations is she doesn't have to have remembered anything and she can ask the same questions over again. She can pull off a "where did you live before?" again without drawing much attention. It was kinda cute watching my mom yesterday. Don't we all crave to be connected to someone? To know and be known? It reminds me of the inadequacies of human relationships. Even the best of them, end at some point. I'm grateful for a better option. I know that there are people who doubt that God, if He even exists at all, really connects with people. But I'm not one who doubts God connects because He has connected with me, He connects with me - ongoing. It is evident to me that I am different because of the time I have spent in the His presence. Truly different. Ask those around me. That I would go to a party and talk with strangers - old people, no less - is further evidence that God is transforming me. That would not be my natural bent, sad to say. But connecting with God helps me lay aside myself to connect with my mom, meet her needs and even relate to her friends. No one is more surprised than me!

In the end, it's about gratitude

2011-04-05T19:24:00.000-05:00

Ok, not so diligent as I thought!
Much has changed since I last wrote - in my life, not my mom's! She has declined in her memory, but she is still plugging away at life. She gets so frustrated she can't remember anything! And it's not the forgetting where you know you can't remember something, as in you know you know, but it's gone. It's disbelief that what she's been told has actually happened. I am waiting for the day when she stops trusting me, thinking I'm making up all sorts of stories! Yikes - hopefully that never happens. I imagine it's lonely being forgetful. Does it feel like prison? She can barely remember earlier today - does she think she does nothing all the time? I realize she enjoys the moment, but don't the memories make the days sweet as well?
For example...
We had a big party for her last Saturday to celebrate her birthday. She loved all of it! You could see it in her whole being! She smiled all day and enjoyed her family and friends who all gathered around her. We ate, laughed, sang and just loved being together. And she has remembered "the party" over these last couple days, but the details have disappeared somewhat.
"What was Ron talking about when he was speaking?"
"Did you sing, Leslie? Oh, I wish I could have heard it!"
"I didn't know Dan brought his girlfriend!" She told me 3 times when looking at photo's of the event! Then she called me when she found "a poem" tacked on her board. In actuality, it was the song I had written and sang to her on Saturday, but it's new. It can't be remembered. It can't be remembered. Can't. The mind is incredible even in it's failings.
But ya know, she sent out thank you's the very next day. She knew that had to be done. And if I don't go take the guest list from her, she may sent them out again! As my husband reminds me, there are elements of my mom that are lasting: she wants to participate, to help and to thank. She is very grateful. She could be crabby, but she's not. She is very grateful for pretty much everything you do. She knows she is so very dependent in spite of living independently. And I'm beginning to think I need some of that gratitude to rub off on me. I live independently, but honestly, I am so very dependent on God. I just don't always realize it. I have these moments like today when I just want my mom back. I'm tired of the same conversations over and over, I'm tired of explaining things, tired of trying to manage someone else's life and all I want to do is call someone and cry and tell them of the ridiculous things she said...but who would want a phone call like that? And that's when I remember that I am called to run with endurance this race that God has set before me. That to do that, I need to keep my eyes on Jesus who, because of the joy awaiting him, endured the cross disregarding it's shame. That I need to look straight ahead and keep moving forward. That I need to be grateful that my dependence is on the only one who can actually help me. And I know that I need to live life with others, which is why I'll probably have to have lunch with a friend very soon.
Dependent gratitude? Grateful dependence? Something like that...

Mother's Day 2010

2010-05-09T08:46:00.000-05:00

I haven't posted in awhile. Life gets busy, but then again how many times can you write "She doesn't remember stuff"?

Today we are hosting a Mother's Day Celebration at the Summer Home where my mom lives. It's a rental facility for such occasions. I was able to help my mom make plans. She sometimes feels so out of the loop, especially at family gatherings. There's hustle and bustle and she's not always part of it anymore. And it all moves too quickly for her. But we had lunch at Olive Garden and planned the menu. While she doesn't necessarily remember the details, she knows she has helped plan it. She has asked about the ham a lot! "Are other people bringing stuff? When do I pay for the place?" But I think it was good for her.

Our relationship is different now. I have to anticipate and cover for her - skills I wasn't born with, but have acquired (somewhat) being a mom myself and now being stretched some more. I have to think ahead. Maybe that's one of the more frustrating aspects of this thing for me is that I have to grow! It's good, but painful and burdensome. If I could just be and not become, that would be much easier. But that's what's so amazing about how God brings the good out of these terrible situations. He squeezes every last drop of goodness out of the struggles we face, because in the end it's growth for us and it's good for us. I hate every minute of it but love every outcome of it.

I will be grateful for every day with my mom. Yes, very grateful for our time together. Happy Mother's Day, Mom! I love you very much.

Funny thing...my mom and I have little adventures when we go out. Something odd always happens...little funny moments. My mom told me to write a book about our adventures, she'd like to read it! I have never mentioned this blog. First of all, she wouldn't get what a blog was and then, this is my processing space. I hope never to violate her trust or privacy, but maybe she wouldn't understand? But it almost felt like permission when she said to write a book. Maybe I'll be more diligent about writing. Here's hoping!

End in sight

2010-03-04T18:21:00.000-06:00

Yesterday I found out:

My mom's foot is not healing - but that was expected. It takes a looooong time!
She is probably done with physical therapy for awhile. Relief! We may revisit the therapist sometime in the future, but for now we have a couple visits left and we are done.

It has been good to spend so much time with my mom. I get to see her ups and downs and my understanding of who she is and what she is going through has soared. She's in a very tough place, so frustrated she can't remember things. Scrambling for words, for names, for systems to help her remember.
"I need a notebook to write things down"
"I just need to get organized"
I find myself rejoicing in every recollection. But really she is not that bad! She manages to live alone, engage socially with her friends, make her meals...I just keep thinking about who she was and I get sad that she can't always grasp that she wasn't always like this. Then again, maybe she does and that's why she's so frustrated. It's an amazing journey that God is taking us all on. I don't believe He is not in the midst of this, not for a moment. My family has pulled together to take care of so many tasks for my mom. And they have impressed me in so many ways - we are all gifted differently and it has worked to our advantage. We can cover many areas. I feel great sadness for those who have to walk this road alone. God has provided for my mom well and the blessings have overflowed to the rest of us. All I can think to say is: Thank You Jesus!

Update

2010-02-24T21:07:00.000-06:00

Hey, her foot hurts sometimes!!!! Is God good or what? This sounds so odd, but I'm grateful that Mom can know she has a problem with her foot because it hurts.

Thank GOD for pain, really...

2010-02-21T16:36:00.001-06:00

Did you know that circulation in a diabetic can be so poor, they are told to check their feet for sores daily? They don't feel their feet sometimes. My husband knew a diabetic man who used to work the chain gang at the Bears football games. The field was so hot one Sunday, he burnt his feet badly; he couldn't feel the heat through his shoes. If only he had felt the pain...

Last Sunday I received a call at church that Mom had done something to her foot or ankle or something. I called her and decided to take her to the ER, mostly because she sounded desperate on the phone. It turns out she had fallen/tripped on a step the evening before and her foot began hurting in the night. The x-rays revealed a fracture in her foot. We were refered to the orthopedist for follow up. We went to the same doctor we saw for her shoulder. Apparently, she fractured a metatarsal bone in her foot and according the doctor it takes "forever" to heal. He gave her a boot to wear, prescribed a walker and MORE physical therapy (6 more weeks to be exact!). Unbelieveable.

The trouble I'm having is that Mom's foot no longer hurts.
"Why do I have to wear this boot?"
"How long do I have to wear this boot?"
"I don't want to use the walker, why do I need it?"
"MY FOOT DOESN'T EVEN HURT"

She needs to do this stuff to preserve the current alignment of her foot.I'm convinced if her foot would just hurt, she would be much willing to follow the doctor's order.

So I've learned the value of pain. I guess I already knew it, but pain alerts us to a problem, it pinpoints its exact location, and it reminds us to be careful. Physical pain, or even emotional pain, gets our attention and allows us the opportunity to fix whatever is broken. Even the pain in dealing with this diagnois reminds me to "TAKE CARE". I can't find a way to erase the pain, but I can seek the One who created the alarm system in the first place. If this pain brings me to the feet of God, it can't be all bad.

So I thank God for the pain...

Imagining It's Me

2010-02-13T21:21:00.001-06:00

My mom is balking at having someone come each morning to check that she has taken her medications. I was trying to imagine being told the same thing. I certainly don't need help with my meds. In my understanding, I do just fine. In my mom's understanding, she does just fine. It would be insulting to have even my husband check up on me and I suppose Mom thinks the same thing. Fortunately, at the moment, she trusts me and she complies, but I'm wondering when she'll stop trusting me. Imagine a complete stranger dictating what you do, making decisions for you - terrifying! It would like one of those movies where people are buried alive or somehow trapped and tortured - sufficating...I don't know...I hate this disease. I hate what's it's doing to my mom. I hate that she knows something is wrong but really she doesn't. She keeps thinking once things settle down, everything will be fine. Yes, once things settle down. I'm just not sure things will ever settle down. But I am grateful for my mom's attitude. She believes God is walking with her through this, that He guides her and I know that's true. He's walking with me too. He gives me eyes to see her struggles, her confusion. It's painful, but it produces empathy in me. I've never been good at empathy. It seems I have to actually experience something to understand what someone else is going through. So, am I learning to empathize or am I just going through something so I can understand others' pain in the future? No matter, God is working in and through all of this. Yes, I can see that is very true. And I am very grateful.

"At least I can laugh..."

2010-02-11T22:24:00.001-06:00

My mom and I went shopping at Kohl's today. She found a few tops she liked-she looked great in them. We ran some other errands and ended up at her condo. As I was getting ready to leave, I made reference to her new clothes sitting in the bag. She honestly had no recollection of them! I pulled out the purple jacket she had bought and she loved the color! Then we laughed and my mom said "At least I can laugh otherwise I'd be crying!"

And that pretty much sums it all up from here on out.