This week a sweet cousin of mine passed away from complications due to Alzheimers. And while we were not a pair of almost like siblings close cousins, I did know her. Our family is the type that if you are family then you get a big hug anyway when first meeting and ultimately get invited to dinner. I knew her when she was a sharp as a tack woman who dressed well and could get to anywhere she wanted like guiding me from my hotel to our Aunts house that first time I was in her town visiting.
When I got the news some 7 or so years ago that she was on Aricept because she was at the beginning stages of Alzheimers my heart just sank. No! I exclaimed…not another family member. At the time my mother was in the end stages of the disease. The once vibrant woman was now less so and had to have one of her nieces live with her to help take care of her. At that time she could still have a conversation with you – to an extent – but only for a short time. Then she would either not really converse or do the usual for this disease repeat herself.
Eventually she had to enter a nursing home because her condition had declined to a level her niece could no longer care for her at home. She held in there for some years until she eventually stopped talking, walking and ended up on a feeding tube in hospice. This week she decided it was time to go home and while she will be missed – especially by her twin – we are all thankful that she is now free from this damn disease.
When someone dies from Alzheimers or dementia it is a mixed bag of feels. Your heart aches because this person you knew and loved, no matter what their condition was at the time, is gone. No matter how many days a week you took care of them or went to see them at a nursing home, when they are gone your emotions go every which way. In my case I was happy I never had to set foot in that nursing home again! I was happy I didn’t have to see mom suffering! I was happy I wasn’t tied to being responsible for her and all of the paperwork, etc. that was involved with taking care of someone sick who was never going to get well! I was happy that mom was free from existing (it was NOT living) like that!
But I also had this strange ache that said no matter what condition she was in she was still my mother and while she was gone years and years ago from the disease, this “shell” that was still there that resembled her and liked chocolate who I called mom, was gone. I have a feeling my cousins twin, other sister, and the rest of the family is feeling various degrees of this too.
I found this while looking for a different post…I wanted to share it with you. Hope it’s not too much of a downer for you but it is part of life.
Originally posted on Images by T.Dashfield:
My recent walks through my childhood have reminded me of so many good memories but they have also twanged that emotional spot that is oh so very tender – how much I still miss my parents. Holidays are difficult times for some people because of where they may be (us away from both sides of our families), the loss of a loved one be it recent or long ago, health issues, problems with finances or relationships – or the lack of a relationship – and on and on. Sad and lonely stands in the shadows of the lights, bells, and colorful bows. I look forward to calling friends and family on Christmas and celebrating the day with DH. This post was written some time ago but I never could get myself to put it up. Now I want to…..
My mother was never the cuddly warm and fuzzy type –…
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Sharing is caring and this is a perspective of dementia that we often don’t to see.
Originally posted on Before I forget...:
I have just watched the most beautiful piece of film I have ever seen. I can guarantee that you will have never seen dementia viewed in this way before.
How do you be with someone with dementia? How do you communicate? Children are the sweetest gift ever given to anyone and in this film young people talk about their grandparents who have dementia and how they deal with it. If it doesn’t bring a tear to your eye then I will be amazed!
Produced by theBBC (British Broadcasting Corporation) for CBBC (the first ‘C’ standing for ‘Childrens’) this is a programme that is on air for children’s viewing times. I feel that this should be shown so that all adults can learn from children how to help their loved ones with dementia. Click on the link below to watch it.
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I wanted to share this with everyone because it gives you stories from the other side of the foggy fence.
Originally posted on Before I forget...:
I just have to share this with you all. My friend Truthful, whose blog I have referred to before has worked hard on putting together thoughts from us people living with dementia to show some great positive stories.
She asked me if I would answer some questions and whether I would mind them being shared globally. Of course I don’t mind.
Today, I see she has posted a list of positive stories on her page and I was so inspired reading through them that I want everyone to see them.
Each of us have different types of dementia, we live in all parts of the world and have different stories, BUT each one of us feel strongly about education how we live well with this disease.
Please take a look and read through our thoughts, the link below will take you to the page.
She has called it:
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There have been a few (many?) movies and books where the main topic was about someone with Alzheimer’s or there was a prominent character in the story with dementia. Let’s not forget about the books written by someone with Alzheimer’s too. But as shown by the topic of this post….would you? Would you, could you read that book or go to the movies to see that movie? Let me clarify something for a moment, I am not referring to any books that are meant as a help or guide for someone who either has dementia or is a caregiver. Those books I have read!
No, this is about fiction and non-fiction dealing with Alzheimer’s. A few books are: Dancing on Quicksand A Gift of Friendship in the Age of Alzheimers by Marilyn Mitchell, Still Alice by Lisa Genova (now a much touted movie), The Notebook by Nicolas Sparks (also a movie), and Elegy for Iris by John Bayley. I am sure there are many more but these are just a few. A few movies are: As previously mentioned Still Alice and The Notebook, Iris: A Memoir of Iris Murdoch, Away from Her, and Still Mine.
Have I seen any of these movies or read any of these books? No. Why? Because I cannot bring myself to read about or go see a movie about something that I watched for 14 years take my mother away from me. I could probably write my own damn screenplay but then again, couldn’t all of us who are/were caregivers or are dealing with the disease itself? I went to see the remake of Planet of the Apes where the actor John Lithgow, while not a major character in the movie, was a bit of the spark for what led the apes to become what they became. He was portraying a person who had Alzheimer’s. And you know what happened? I freaking cried in the movie!
Did not see it coming; was totally blindsided by this emotional outburst. To this day I have no idea why I started crying but my best guess would be that seeing his decent into the disease and his eventual death reminded me of my time and of a hurt that while I thought I was somewhat past it all, I apparently was not. And that is why as much as the books and movies may be great and Lord I hope they can do something positive to increase awareness (and funding) for a cure/help for the disease, I cannot deal with them. They remind me too much of what I lived through and frankly, I do not like crying into my popcorn!
I was recently blindsided (again – geeze!) by a post I read. It was on the blog of, Frangipani, a woman in Singapore whose mother has dementia. She had a link on her post to the blog of a woman who is dealing with early onset Alzheimer’s. Gill – of Before I Forget – lives in England and wrote a post about how the person with Alzheimer’s feels about the trauma we caregivers feel about taking care of them. For one, it was wonderful to read about Alzheimer’s from the other side of the fence (my mom wasn’t able to fully communicate her feelings but there were days I could sense it) and it was an eye opener. And it was also another Ninja attack right between the eyes for me. Didn’t see it coming and sure as hell did not see the floodgates of emotions it unleashed.
Her post took me right back there to being a caregiver and the things I said to and around my mother somethings that at first were really really horrible and then slowly changed as she became worse and I learned better – not totally – to accept things as they were and were going to be. I ran upstairs to where my husband was cooking dinner (yay for him cooking!) and just sobbed I needed a hug. Him being analytical is asking what? What happened? I couldn’t explain I just needed a hug and finally he caught the clue and held me as I sobbed about some guilty feelings that I thought were long gone…apparently not!
So that is why I cannot read these books or go see the movies. Maybe one day, maybe not but unequivocally not happening now! It’s interesting though that I can read blog posts much more readily. Perhaps it’s because I feel they are more “real” and that I can comment and even start a conversation with them if we both choose. Sometimes I feel that maybe I am in some way helping by leaving a comment or a word of encouragement. So returning to the title of this post – would you, could you read these books or go see these movies? Or have you already? Tell me why you have or haven’t.
About not having done a post in entirely too long (I am sorry about that) and remembering a time when I was so embarrassed about my mother and her Alzheimer’s. I think to some extent we all have moments of being embarrassed by/about our parents – especially during the teen years – but when they become ill that takes on a new form. Why was I embarassed? My mother was sick, she had a disease that there still is no cure for, it wasn’t her fault, she wasn’t the only one with Alzheimer’s in the world, she was old…and there were too many times I was ashamed (yes I said it) and embarassed to be seen in public with her.
Well, for one, when out in public with her I was always freaking out that she might wander off but more so I was ashamed of how she looked and acted and by the stares from others. If I could reach back in time and smack some sense into myself I would. Mom went from being a woman who had a regular you could set your watch to it appointment at the hair salon to looking as if she didn’t know what a brush was. She went from keeping herself and the house clean to both being a total mess. And of course she went from knowing how to have a conversation with people to heaven only knows what would come out of her mouth!
And I was ashamed to be seen with her. I was embarrassed that she was sick with a disease that at the time I had no idea what the hell was going on and like too many ill informed people considered it a mental illness of the type where “we don’t talk about that family member” type. When I did go out with my parents (by this time mom and dad were pretty much glued at the hip) I would walk some steps behind or in front of them because I didn’t want to be associated with this old sick couple. I didn’t mind if people thought I was with dad – he still had both legs and the diabetes hadn’t taken over yet – he looked and acted “normal” but mom? Ugh!
Her hair was often not brushed, she wore clothing that was too big for her sometimes and often you could read their breakfast menu by the stains on her shirt which often was on it’s 3rd day of wearing. I was ashamed, embarrassed and hurt. I know about the hurt now because, well, you know how hindsight is. I was hurting because my mother was sick, I didn’t know what was going on, I felt powerless and I needed to have my mom be my mom! I wanted to have a mom like everyone else I knew – not sick. As the dementia progressed and she began to become violent sometimes when we would try to go out with her or have people come in to help, I gave up trying to go out with them unless I really had to. It was just as well because it was shortly after that that they both became too ill and had to go into homes.
If you are a caregiver who is dealing with a loved one who has dementia or any other disease you will feel moments of shame and embarrassment. You can count on it happening! Why? Because we are humans and we have our shortcomings and because when we have someone we love who is sick our emotions will and can run the full spectrum of emotions. Don’t beat yourself up over it. Learn how to deal with it as best you can. First and foremost learn about your loved ones illness so that not only you will understand what’s going on but also so that if the need arises you can inform others that your loved one has such and such disease. It’s entirely up to you if you wish to do that last part.
They are sick and need your help and trust me, inside they are fighting the twin monsters of shame and embarrassment too! I wish during those times with my mom I had shown her more kindness or at least tried to. It took me a long time before I learned to go where she was and find some joy in the midst of all that ugliness that was her Alzheimer’s. I wish I could’ve said “My mother has Alzheimer’s” when met with quizzical stares with my head up and now down. It took me a long time before I reached that point.
This week their annual grave blanket with candy canes (mom’s fave candy next to chocolate) was placed on their grave. Merry Christmas Mom and Dad.
Why it happens I don’t know and I’m not even sure the “experts” know either but besides screwing with the ability to remember things, dementia messes with the person in many other ways. They can become more paranoid or they may go from being mean to lovey dovey and vice versa. Some change from being neat to being super over the top neat or conversely – very sloppy.
My mother went from being neat and clean and nice (but never warm and fuzzy unless it was with the grandkids) to being so terribly messy, unkempt, and eventually she went through a phase where she wanted to hug and kiss everyone. Oddly, that lovey phase just was weird because for my entire life she was never like that and it just made me uncomfortable. Sad but true.
I’ve seen where the one with dementia would gain weight not because they were that hungry but because they couldn’t remember eating and would eat again thinking they hadn’t eaten or that someone had refused to feed them. Mom didn’t have that issue. Fortunately something in her told her to stop cooking and dad took over that task (although I’m not sure how well they were eating as he was getting sicker too) but even with that she began to exhibit odd behavior with meals.
If she ate something and got the hiccups or a bit of gas she would refuse to eat that food again! Funny, she could remember that something gave her an upset stomach but the rest of her memory was misfiring. Or maybe it was that she was saying all of those things upset her stomach and she limited her diet to the few things she could remember. Either way, her diet dwindled down to bottles upon bottles of Pepsi Cola (that was the only cola she would touch) and peppermint candies. Dad did manage to get other food in her but their trashcan would be filled to the brim with empty cola bottles and the floor around the indoor wastebasket was littered with the peppermint wrappers.
When they had to go into nursing homes and we cleaned out their old house there were so many bottles and wrappers in there I had to resort to using a snow shovel to scoop them all up! Another behavior change was that she would get confused about temperatures; either over dressing in layers when it wasn’t that cool or she would fiddle with the thermostat and turn the furnace up to just this side of Hades even in the summer! That last habit proved to be very dangerous later on.
As a caregiver – be it living with your loved one or having to stop by often to check up on them – your work will be cut out for you and my best advice is to get help! If your loved one doesn’t threaten to clobber you and the person/s you hire to come in to help out (like mom did to me and an agency I enlisted to help – that was one ugly scene!) and you can afford it – do that! Enlist the help of other family members if you can and they will actually help you. When all else fails, prioritize! You can’t and you won’t be able to win them all; work with what you can as well as with what is most important.
Remember – if it comes down to your loved one eating the same thing every day (as long as it’s not unhealthy for them) versus an outright battle, let them eat the same thing! You might even be able to sneak in some other food if you can disguise it enough; think how some parents have to try and get veggies into their children. With bathing if they refuse to get into the tub or shower then go with sponge bathing. If all else fails gather up your strength for a mighty once or twice a week bath or shower fight. You will both be less stressed if you attempt this once or twice a week instead of every day. There’s grubby and there’s GRUBBY! You will learn to differentiate.
That reminds me of something. Mom hated taking a shower in the nursing home to the point that they had to give her a mild sedative (how I hate the memory of that) to get her in the tub but one day an aide decided to take her and put her in the whirlpool. She liked that so much that they no longer had to give her any medication to take a bath. So maybe switching from bath to shower or the other way around could work for you. All you can do is try and realize you aren’t a failure at being a caregiver if something doesn’t work out…you just found something that didn’t on the way towards what will!