I can’t believe this is going to be my 6th Mardi Gras season here. We just re-financed out home, and “permanent resident of the greater New Orleans area” has a nice ring to it! Coming out of my fog from my dad passing, I realize I have so much to do to get ready for Mardi Gras and the kids’ Mardi Gras school vacation (yep – they get that week off). My cousin asked me if we decorate for Mardi Gras – yep sure do. I have a few things outside – totally bush league – but am trying. Inside I display all the cool throws and doubloons we have collected so far (still need to do that).

Now for the checklist

* Weight to lose before parades and balls begin – check (phew). I tend to gain more weight than the holidays during these festivities due to good food, adult beverages and my love for King Cake.

* Gowns – check – (got 2 consignment shop steals I adore).I think we are only planning on one ball this year and that works for me.

* Spanx – check

* Ball tickets – check

* Wagon to haul stuff to parades – shoot – ours broke last year and was shot out at the firing range. Gotta get a new one!

* Make plans to hit parades with friends and their families…must get on that.

Yes, folks…my kids will be at all the parades with me – it is very family oriented! Not all the 3 kids love parades equally, but all have a great time once they are there. As for hubby…he would skip parades, except the one he rides in if I let him. Nope -he never gets off the hook and always has a wonderful time!

Laissez les bon temps rouler! (Let the good times roll).

Caregiver: a person who provides direct care (as for children, elderly people, or the chronically ill)

Void: an empty space; emptiness

My father passed away peacefully in his sleep on January 8th, 2012 as a direct result of Alzheimer’s Disease. For the 6 months leading up to his death, we took him into our home (my hubby, 3 kids, dog and 4 cats) and I became his primary caregiver. We had some help along the way with hired sitters during weekdays and an occasional weekend night, but for the most part it was me. When someone says they are caring for someone 24-7, they often mean it. Dad could not be left alone at all in the house at all or unattended for without checking on for very long. If he was in a room, someone, even one of my kids, was in there with him as much as possible. It was difficult to get him in and out of my car, so running to pick up a kid from an activity or grabbing an ingredient from the grocery store, became a challenge. Thank goodness my fabulous husband, understanding and helpful kids and friends were there to pitch in when a sitter was not available. The household priority became caring for Dad, no regrets, we all changed, became a team and moved into this role with ease.

For those who do not know, Alzheimer’s patients often get all messed up regarding sleep. Sleep pills that would knock an elephant out, did not necessarily make a difference on Dad. Nights became a whole new part of my day. As I adjusted to lack of sleep when the kids were babies, I somehow survived on broken sleep the entire time he was here. My body and brain accommodated and my need to do extra things changed. Things that may have once seemed urgent to do, often dropped low on the priority list. Before he arrived, I worked out 6 days a week, dropped to 4-5 days for 5 months and pretty much stopped exercising the last month. Once someone with a very active social life, my family watched me transform into a homebody, often found on the couch next to dad with a book or watching TV with him. I turned down a gazillion invitations for media events, get-togethers in New Orleans (40 minutes away), parties, lunches etc… but told people to keep inviting me as this was only temporary. From being on the go all the time, I huddled at or close to home with my family and close friends during the past 6 months. I transformed into a different version of me that was created out of the need to take care of others first.

Early in December, Dora, Dad’s full-time weekday sitter passed away unexpectedly. We became extremely close and were happy to see each other each day. If Dad was still asleep, we shared a cup of coffee together and chatted away. After she passed, I caught myself looking for her, preparing extra coffee for her and even called out her name (could have sworn I heard her walk in). Her final gift to me was preparing me for things to come with my father as habits are hard to break and I truly missed her. Since his passing, I have found myself going to check on him often and running errands in a hurry to get back to home-base. Will I go back to my previous lifestyle? Probably not…but a happy medium. Not that I consider that a bad thing at all, we all change throughout our lives, hopefully for the better.

I have done what I hope is most my personal grieving, been to his funeral and have a small ceremony planned with the Hospice Chaplain this weekend for the family. I have shed more tears than I expected to, but am truly at peace that he is at peace. I am back to sleeping at night now (after a few days of Ambien), working out, and have gone out a few times with friends and hubby. Knocking off the to-do list is actually happening, though “important and necessary” has taken on a whole new meaning. Life is a gift, each moment is ours to make the best of it. Time to move forward without Dad here physically and cherish the memories. He would have wanted it that way!

And for the record, writing and sharing this journey through social media has been cathartic. I can’t thank you enough for all the support and kind messages along the way. My goal was to help even just one other person and I think that mission was accomplished. This journey truly helped me to become a better person…THANKS DAD!

Not sure how it happened, but somehow my entire life I have been blessed to be in the presence of many men who could unequivocally be called a “Mensch.” So…what is a Mensch you might ask? Jewish Healing pretty much sums it up by saying:

A mensch literally means “a person” in Yiddish, but figuratively it means something much deeper. A mensch is a person with whom you would be happy to befriend and associate with, because you feel genuine in a mensch’s presence. A mensch is a highly evolved human being. Menschlichkeit (the art of the mensch) has nothing to do with looks, with wealth, with success or with intellect. A mensch exudes a certain magnetism that attracts us, whether or not words or glances are exchanged. A person is a mensch because he simply makes others feel good.

This wonderful group of “Mensches” was together in New Orleans, February of 2011. From l to r: Henry Cook, my wonderful hubby Brett Perry, my father Sherman Marcus and Sir JJ Witmeyer. I think the Earth moved that day as 4 great men got to spend some time together.

The word Mensch is not be carelessly thrown around, or it would destroy the integrity and value by which the title can be used. My whole life, people have referred to my father as a “Mensch.” During his funeral, the eulogy written by my brother used the word often. I am blessed to have been raised by a true “Mensch,” my Papa is one, I married one and have several in my life that I have the honor of calling my friends. I am the luckiest girl in the world!

My Grandfather “Papa,” Carl Brennion, an Iwo Jima Veteran is still a “Mensch” at 93. Every nurse in the VA loves him. How could you not?

Even if my Dad could not remember my name, when I mentioned JJ, his eyes lit up and he always referred to him as “my friend.” Though they only knew each other for 5 years, in Dad’s mind they knew each other from childhood. They had a true connection.

My husband Brett is truly a gift. I am far from perfect, yet he continues to love me unconditionally. He never hesitated when my father living with us became an option. He watched almost every Red Sox game with him last season and did all the heavy lifting when Dad needed it. He already said he misses having him around.

One last thing, of the 5 men I mentioned here, 4 are Veterans. My father is the only one who never served as he had to care for his mother while his brother Joe (who was also a Mensch) served. They are all heroes in my book!

For the past 6 months, I, along with my loving husband and 3 wonderful children, had the honor of caring for my father, Sherman Marcus on the final leg of his life journey. Alzheimer’s Disease is difficult, but we all made the best of it each and every day, spending quality time with him, smiling and keeping a positive attitude. Dad was surrounded by much love and given the dignity he deserved until his last breath at 12:30 AM on January 8th in my home. He died peacefully having said good-bye, in his own way, to each and every one of us before he passed. The Hospice Chaplain told me most patients somehow pulled through the holidays as they felt the excitement in the air. Dad did that as well as wait for my brother and mother to arrive to say their good-byes before parting from this life as we know it.

Caring for someone as they are approaching the end of their life, naturally, is a lot of work, but work worth doing. My husband, children, friends, dad’s sitters (R.I.P. Dora), healthcare workers, along with the the Hospice team all contributed and showed my father true kindness, never forgetting that he was a person that demanded their respect until the end. It was gift, a gift to all of us as he warmed our hearts and touched our souls with his smile, charismatic personality and good-nature. Life goes on for all whose lives my Dad has touched…with the wonderful memories he allowed us to make with him along his journey through life. He will live on in all our hearts and minds as memories linger on forever.

Thank you Dad for the final gift you bestowed upon my family. We were truly honored to be able to spend this time with you and have all become better people because of you!

Final details: A service will take place at the Stanetsky Memorial Chapel, 475 Washington St, Canton, MA on Wednesday Jan. 11th at 10 AM. Expressions of sympathy in his memory may be donated to the Hilltop Humane Society, POB 553, Randolph, MA, 02368 (dad was a huge cat lover and spent a lot of time there). I will attend and represent my family and those in Louisiana whose lives he touched. My children are planning their own service here to honor his memory in their own creative way and will give me pebbles to place along his grave as is a Jewish custom.

Thank you all who have followed along and for all your thoughts and prayers along the way and for those who allowed Dad into your life. It truly gave me more strength than you will ever know! I am truly blessed. Please do not feel sorry for my loss as I have only gained!

We are all going to die – how, where, why and when are the unknown we live with from day to day. Dying naturally does not have to be depressing, sad maybe (if you choose to see it that way)…but not depressing. This is why we are reminded over and over throughout our life to make the best of it – it is temporary (either before our natural time or naturally). No need to break out the tissues for this post – trying to keep things real and as upbeat as possible here. Nobody likes death, it is not fun and how we choose to deal with it is a very personal thing. No matter what your beliefs, we can all agree that life as we know it right now, here on Earth, will come to an end for each and every one of us. Circumstances regarding the death of someone in our lives and our relationship with them, will also truly impact our grief and emotions differently each and every time. Just the way it is…

If you have been following along my 6 month journey with me writing about my caring for my Dad with Alzheimer’s Disease, or if this is the first post you are reading, humor and a positive attitude (and an awesome husband and great friends) have got me through this journey and kept me out of the insane asylum. I’m not going to blow sunshine up your ass here – as I have said before – Alzheimer’s sucks and dying sucks, but caring for someone who is dying doesn’t have to be miserable with and black clouds. Caring for my Dad has been the final gift my Dad gave to me. It has been an honor to be able to care for him.

Many people have asked me if you can die of Alzheimer’s Disease. Six months ago, I only had one experience with it as my husband’s Aunt had it, but had never felt the need to learn more about it. Now that I am dealing with it head on, I have sucked up as much knowledge as possible. So how do Alzheimer’s patients die? I am not a medical professional nor do I play one on this blog…but from what I have learned – seems malnutrition and/or infection get our loved ones in the end. And you know – what – both are natural. Throw Hospice into the equation – and they help you to keep your loved one as comfortable as possible while your loved one experiences the natural dying process. To enter Hospice, there needs to be an approximate six month projection of life…though that does not mean someone will not live longer…or even get off it (my Grandfather has at 93). When a person will pass, is up to the person and a higher power, so nobody really knows.

I always find it best to write about what I know…and I know what Dad has been going through under my care. With the unlearning of many things with his Alzheimer’s and a couple of illnesses, he has become weaker over time. Once being able to scoot around on his walker…he progressed to being confined to a wheelchair and for the past few days, mostly in bed and now sleeping. When an Alzheimer’s patient gets any type of sickness or even a change of their environment (going to the hospital), their mental capacity can take a deep plunge, never to return. Because the fact of the matter is…when brain cells die…they are gone. Then there is the end of life rollercoaster ride. There have been several times along Dad’s journey, we thought he was very close to the end, but he surprised us and rallied back. Days without eating and sleeping all day, have been followed by good days of propelling his legs around on the wheelchair, eating, singing and sitting up at the table with the family. This disease, Dad and his personal journey to the end, is one nobody can control or predict. We have to smile and take in every good moment. Just yesterday he woke from an all day sleep and when I said hello, he answered back clearly, “Hi babe.” I’ll take it!

Am I sad? Well…sad that my kids will lose a Grandparent (Zaydeh) that they love very much. Sad, that I will not get to take Dad to Mardi Gras this year and that I will lose the man who shaped me into the woman I have become. But, I am not sad that he is passing away naturally, comfortably, and surrounded with lots of love in the comfort of our home. His system is slowly shutting down with sporadic fevers and all the medical tell-tale signs that he is getting close to the end. Being his caregiver during the final chapters of his life has been a true blessing and lesson in compassion and life for my whole family. It has brought us closer together and made us appreciate quality time at home together. We may shed some tears from time to time, thinking of Dad/Zaydeh/Sherm not being here with us, but in the end we will all smile thinking of all the wonderful memories we made together!

This is me hanging with Dad on Mardi Gras Day in Metairie 2011 (don’t remind me I need to start using Botox lol)

This is Dad’s new addition to his face, compliments of his Houdini abilities!

Alzheimer’s Disease is by far the most unpredictable thing I have ever encountered (besides my mood off my hormones LOL). I look at all the stages that have been studied and seem to have created some new classifications via Dad – Zaydeh Zone, Super Powers and now Houdinism. What he can’t do when you are looking, sometimes becomes a simple task when you leave the room or go to sleep. I have been truly amazed by the things he can accomplish when my back is turned. Not good for him, but good for me as a caregiver is, he has a very bad hip so we have not had to deal with wandering in the almost 6 months he has been living with us. That being said, safety is the #1 priority and like a small child – it only takes a second for him to do something.

With Hospice in place – the goal was to never have to go to the hospital or doctor again. So here we are – day 3 of no help, just finished taking down Christmas decorations and enjoying a cocktail with hubby and my wonderful friend Toni (with Dad in eye’s view). Dad is propelling himself around with his feet while his seatbelt is on in his wheelchair. He often parks it by the fireplace and chats with all the pictures of the kids in his “Zaydeh Zone.” And then – in slow motion – I see him tumble out of his chair and hit the corner of the fireplace. My hubby’s first response was that I forgot to belt him in – nope – he undid it! He had done it in the past – but not for a while. Sure enough – a nice gash that will require medical attention. This poses a dilemma as I refuse to abuse 911 and he can no longer assist getting in a vehicle. I got the legs and hubby the top and in he went and off to the ER. After 2 hours, refusing any type of scan as he was singing away (and at this point we will not do that) – he got Dermabond. He was an amazing patient!

This morning, he has a sheet tied around him in addition to the seatbelt. Houdini will not strike again! And Toni has been Googling all types of safety harnesses to keep him in his wheelchair. The roll belt is secured to his bed and the recliner causes a whole other Houdini dilemma. Dad can’t afford to break a hip at this point so time to tighten the “restraints” (a bad word these days) or whatever you want to call them to keep him safe at home!

My Dad, known as Zeydeh to everyone (Jewish Grandfather for you slow kids), has happily entered in his Alzheimer’s Disease, what we now refer to as the “Zaydeh Zone.” In a previous post I wrote about his end of life “working.” The “working” post was referring to him overriding all his sleep medications and staying up all hours of the night talking and working things out (which he is still doing). The “Zaydeh Zone” seems to be more of an Alzheimer’s stage he spends most of his time in these days. He has been on a bit of a rollercoaster lately as his disease progresses, health issues come into play, and his sleep and strength needs do no align on a consistent basis (schedule out the door). Dad was always a very busy person (like me) and had a lot of energy to burn. Now that he does not have the strength to walk or understanding to do much for himself, seems his energy reserve has transferred to his brain going non-stop. Christmas Eve he sat at the table with us while we played Monopoly for a few hours, sang and talked the entire time – happy as can be. He is able to adapt to his daytime anti-agitation medications doses and still stay in his zone and keep plugging along. If you talk to him or engage him in the “Zaydeh Zone” he may or may not reply. He does not smile on command any more, but can be caught smiling while talking to himself, even laughing.

The “Zaydeh Zone” has become family entertainment and how we are all coping with him losing touch with reality. My kids are actually embracing it amazingly (ages 15, 13, 11). Dad sleeps in what used to be the playroom. It still has a couch, TV and video games, so the kids get sporadic time in there- with dad getting first dibs. It used to be, when he was napping or going to sleep, the boys (who rule the video games over Princess), used to wait until he was fast asleep to slip back in there to play again. He used to register in some sense what was on the TV screen and get scared or react to different things, so they also had to sensor what they watched. Now with the long hours dad is putting in entertaining himself, the only thing I make them do is turn out the light at night. He can often be seen sitting next to them as they watch TV or play a game, chatting away to his heart’s content. They have concocted some stories of their own regarding dad’s past to play along. Their newest joke is that they are convinced he was in the mafia. He has got into a few arguments in the “Zaydeh Zone” and has even yelled. Whatever works for the family – works for me. As long as Dad is happy and comfortable (which he is), we are just happily along for the ride and embracing each transition as a family.

This picture was taken on December 20th. For the 5 plus months my Dad has lived with us, we have gone on daily 1 mile walks with Chulo (almost every warm day). Since his recent hospitalization and upon entering Hospice, I was pretty sure these walks were over. This day we had remarkably warm weather and he was strong enough to sit up, so I jumped at the opportunity. In the past he had pointed at all the flowers and pretty yard ornaments as we went along. This was the first walk he was in his “zone” just rambling along talking to himself, yet still seemed so happy to be outdoors (he loves being outside). I am not sure if we will have many more of these days, but have enjoyed each walk with him (and so did Chulo).

I would like to to take this time to thank all of you who have allowed me and Dad into your lives via social media or real life friendships. It means more to me than you know. If I can help just one person through my writing and social media, then it is worth it. On the selfish side, I continue to call it my “FREE THERAPY!”

Yep, we are in full-swing with the “H” word and things are running as smoothly as possible. My previous post on hospice (a damn good post if I must say so myself – so go read it!) talked about how I would embrace it and not fear it when it came. Dad turned 83 on December 10th. The average life expectancy is 78, so we are fortunate to have thee extra years (my way of looking at things). The week before dad’s birthday there were two unexpected passings of loved ones in my life, my friend and Dad’s sitter Dora and my little cousin Stephen. Within 48 hours of these 2 tragic events, Dad also took a turn for the worse and entered Hospice. Actually, it was the day Dora passed (coincidence – I am not sure – but he loved her very much and she took great care of him and he has asked for her since). Dad expressed his wishes for a comfortable passing both in legal writing and to me during several lucid intervals. Hospice is here to make his final time here on Earth comfortable and to support all our family.

1. My life of running around to pharmacies, doctors (dragging Dad) and to the store to get this or that for Dad has come to a halt. They deliver everything to my door and come to the house for all Dad’s needs.
2. Medicare covers all Hospice expenses (this does not include sitter care by the way).
3. Hospice is a well-coordinated team, as good as any military unit! Nurse, social worker, Chaplain, assistant nurse for bathing, pharmacy, durable medical equipment…all working together.
4. They will speak to all family members! Nothing worse than playing that game “telephone” with family members regarding important information regarding a loved one. Makes things much easier for everyone and information is clearly communicated to all. All the family has access to the main Hospice number regarding any concerns.
5. They are one step ahead of you! They know what they are doing and have things in place for you to anticipate upcoming needs. For example, Dad was never on oxygen, but it was delivered to the house. Turns out he needed it for a couple of days and managed to turn it around and get off it for now.
6. They offer 24 hour support. They have nurses that just work nights, either to talk to or if something happens and the loved one needs to be seen.
7. They really care! And if you are not happy with your experience, you can always transfer to another Hospice (they even tell you this).
8. The entire team loves what they do and many have had previous experience with Hospice with their own family and that is how they got into this field.
9. They treat the whole family – everyone – and educate at the same time.
10. It is all about comfort for the patient/loved one! They prefer the patient to stay where they are (their home at the time) but would transfer the care to a facility if needed. One can even go on Hospice in a facility. No pain, no discomfort at all…Dad is very much at peace each and every day!

To tell you the truth, I am truly OK knowing he may pass now or whenever he and God decide it is time. We are blessed to have Hospice with us until the end and even if we need support afterwards!

Picture stolen borrowed from here.

From my house to yours – Happy Hannukah!

Thanks to Barbara Miller for this one:)

Dad is sinking more and more into his happy world and away from us. I view Alzheimer’s Disease as a process of unlearning and unpredictable firing of the brain. As time goes on, his brain may have unlearned many of the things we take for granted, such as chewing food or putting on glasses, while parts of his brain have actually gone into maximum-overdrive. Last week, I put Dad to bed at his normal time, gave him his sleep and relaxation medications and he could not sleep. He started talking…and when I say talking…I mean talking…non-stop! He has done 3-4 hours a night of talking, absolutely over-riding all his medications (he took last night off – phew). When I spoke to the Hospice Nurse regarding this new behavior, she informed me that Dad is “working.” He knows he in his final stages of life and in his mind he has some unfinished business. She told me that a patient could be given horse tranquilizers (tongue in cheek) and still not shut off their brain in order to get their “work” done.

Dad has been “working” at his desk, conducting his orchestra, driving the trolley through Boston and giving directions to tourists, talking to his family as a child and so much more. It is non-stop action in his mind and it can go from jumbled to easy to understand intermittently. As I type this, he is engrossed in a conversation with himself and perfectly content. Agitation also has come into the picture with the late stages of the disease, just par for the course. Hospice has that under control with “comfort” measures to keep him at peace while he continues to “work.”

And for those who are not sure what someone with Alzheimer’s actually understands, after observing and caring for Dad, I can say that he takes in way more than most would give him credit for. For example, we had Christmas music playing while he watched us decorate the tree this weekend. A day later he randomly broke out singing “Silent Night.”

As sad and awful a disease as Alzheimer’s is, there are so many treasured memories we have made during this time. We just accept each day he spends with us as a blessing. The kids roll with the disease better than most adults do. When I have moved him too fast on occasion, he has blurted out to me, “I’m a human being, not an animal.” It is now my job to treat my Dad, Sherman Marcus, with the dignity and respect he deserves until he is done “working” and officially retires.