Posts Tagged dementia
My original intent of this blog was to follow the timeline of my life as a caregiver but we know that plan went to hell in a hand basket. But isn’t that just like dementia and Alzheimer’s? You never know what is going to happen from day to day and you just have to deal with it as it comes at you; plans will get screwed up! Today I am dreading next week not because of something that is actually coming up but more so because of an anniversary that is coming that always brings tears to my eyes. It’s been 10 years now but it still gives me a kick in the gut each year. Will share with you next week about this…
But what happened today was that as I was working away at my desk I paused to let my poor tired eyes rest and I turned to look at the cork board I have on the wall next to me which is filled with a potpourri of items – notes, greeting cards, old work ID badges, a movie ticket stub (why is that one there by the way???), a ten dollar bill I found once in a mud puddle and photos. There are photos of the kids, the grandchild, me and the spouse, me and my father and one of mom walking down the hallway with a smile on her face in the locked Alzheimer’s unit of her first nursing home.
I came to really hate that place but that’s another story for another day. What scared me was that with all of those photos up there the ones of mom and dad had the opposite effect on me. I look at the one of me and dad in his wheelchair and I get misty eyed and miss him but the one of mom? I find myself staring at the photo and trying to connect some how and all I feel is this lost and disconnected feeling; almost as if she is a stranger or at best a distant relative. And that is scary! Dad passed away 10 years ago but mom passed 5 years ago. So why do I feel more connected to him than her? That robbing bastard Alzheimer’s!
Up until he took a turn for the worse, I could still talk to my father even if it was in short sentences and he still knew who I was. But I dropped off mom’s radar some 14+ years ago. She was always mom – nothing could ever change that – but the reality was that she was just this little old lady with Alzheimer’s that I was taking care of and took care of for many many years. Somewhere in there that mother daughter relationship took a up in the nosebleed section back seat to the caregiver/dementia patient relationship; that is if you could even call it a relationship because there was no give and take, there were no conversations (she went into word salad mode very early in the disease), and there was no recognition from her side of the fence of anything other than basic feelings and emotions. She smiled at things we couldn’t figure out what the hell she was smiling about. She smiled when you gave her chocolate to eat and she would yell and once in a while curse if you touched or grabbed her the wrong way and let’s not talk about the commotion when it was time to do any lab work. If you didn’t watch out she could punch you pretty good.
But even with all of these memories I still look at her picture or think about her sometimes and feel this lost emptiness, a failure to “feel” her. My mother left me a long time ago and I don’t seem to be able to find her…and that’s scary.
Today, five years ago, is the day that many of us who are caregivers either dread or are happy that it has finally come. Today was the day that the battle of mom vs. Alzheimer’s came to an end. We all know who won that fight and until they find a cure Alzheimer’s will always win that fight and take with it the person we once knew but will always love. They say that when someone is ready to pass on that they either hold on until everyone they care about has come to say their goodbyes or they hold on until those who they are about to leave behind have made peace with the whole thing and are ready to let them go.
In the case of mom and dad I waffled around with letting them go or not. There were some days in fits of frustration and anger that I cried out for God to come and get them and get them now! I’m glad the almighty chose to just shake his head at me and let them live on awhile longer. Because once I got past the frustration phase of being a caregiver (well, not entirely past there were moments when I still got pretty damned bent out of shape) I found my way through and learned to live in each and every moment I still had with them. Take note of that! It is important to live in the moment with them because that is all you will have. In dad’s case because he could still talk to me up until his sudden downturn; I held on for dear life with him. With mom, because the disease had taken her away from us all years earlier I wasn’t clinging as hard.
Mom decided when she was ready to check out by slowing down her intake of nutrients until she stopped entirely. Her advanced directive stated that she was not to be tube fed nor resuscitated if her heart were to stop; you may chose differently. So when she stopped eating and drinking we all knew it was just a matter of time until her tough old broad body finally stopped working. I am very thankful for the magnificent hospice people who took care of her (and me) during this time. I don’t think I could’ve made it as well without them. They bathed her, spoke softly and kindly to her, and made sure that when her time was near that there was pain medicine for her.
I came every day that last week of her life and could do nothing more than pat her hand, kiss her forehead and tell her she was good to go; I was cool with whenever she wanted to leave. I will admit to some moments of panic when I would call the hospice folks and beg them to send someone out to sit with her at some times when I couldn’t be there. For some reason I had this fear of her dying alone without anyone there who cared about her. Not that some of the nursing home staff didn’t care it’s just…well it was this paranoia I had. As it turned out on this day one of the hospice ladies was there to bathe her when she noticed the shallow breathing and then the last little exhale. She didn’t die with me around but she didn’t die alone.
The phone rang that early morning and I knew right away what it meant before even answering it. I threw on my clothes and rushed to the nursing home where they kindly pulled the curtains around her and gave me the privacy I needed to say goodbye to her. They even brought me in a muffin and some juice; not that I had any appetite then. I touched her hand one last time and noticed it was still a bit warm and then I said goodbye and proceeded to deal with all that was needed for the next and final phase of being a caregiver to her.
Funny thing, I never really had a good cry over her. Well, maybe sometime later I did I don’t really recall. That moment when you have that soul purging cry can come at any time and not always when you expect it! As Alzheimer’s had taken what was “Mom” years and years ago, this was just her body leaving to go be with her mind. I had been grieving for 15 years by this time so I guess I was almost grieved out…almost. Losing a loved one to Alzheimers/Dementia is never easy and I would suppose that depending on the relationship (spouse, parent, child, grandparent) how one handles it and grieves varies. Just know that you can and will get through this stage of caregiving and that you will never forget and always love that person.
(I know I’ve jumped all over the place with this blog. My original intent was to stick to the timeline of my time as a caregiver but we all know how that’s turned out 😉 Will try to get back on the timeline with the next post.)
Mother’s Day is just a few days away and while some of you are pondering what to give mom it made me think about A. how I still miss mom and B. what can someone whose mother has dementia/Alzheimer’s do for them for Mother’s Day. It really all depends on what stage they are in. In the very early stages you can go about celebrating with mom as you always did; perhaps with a bit more patience if she has gotten foggy in the memory bits. But this is the time to treasure with her because it will only go downhill from here. Sorry to say that but we all know this is a disease that while we may keep it at bay for awhile in the end it creeps in and over.
As she progresses you might have to be very careful if you are a family that celebrates by taking mom out. She may have reached a stage where anxiety about being out in a crowd can be daunting or she may be aware of her “shortcomings” and prefer to celebrate at home instead of being out some place. I truly believe that those with dementia who are self aware have moments where they know what they are and aren’t capable of and would rather not have to have a moment out in public. I know my mom was embarrassed about not being able to do something as simple as look up a phone number in her own handwritten phone book so instead of dealing with the frustration she would call me and frustrate me instead to look up the number for her.
If you normally celebrate at home or have to do it there (or in a nursing or assisted living home) then keep things simple. As time and the disease progress, having too many people around and a lot of stimulation can be a double edge sword. On one hand it is good to be around those who you love and love you and in some cases it brings the loved one “out” again but over stimulation can also lead to anxiety and potential behavioral issues. As the disease gets into the later stages your celebrations may be limited to just a few people or just you and mom. Which leads us into what to give a mom with dementia?
Again, it depends on what stage she is in. Flowers are always nice as are balloons and cards but don’t be shocked if the woman who once loved these things looks at them with disdain. Behaviors and likes and dislikes change with the disease. I will say that candy is always a winner no matter what the stage unless of course they are in the late stages and cannot have candy or they never liked it in the first place. Up until mom was no longer able to chew and swallow, she loved chocolate! So I always brought her chocolate and fed it to her in small little bits. Seeing her smile and chew away happily always made me smile even though I knew she hadn’t a clue about who was feeding her. I also would buy her the wildest t-shirts I could find when I went traveling. She had no idea what they said but the staff knew her daughter cared about her and had a weird sense of humor. Your mom might like a favorite meal or to hear music she’s always loved instead. Thoughtful creativity may have to come into play.
In mom’s early stages I gave her cards and – surprise – chocolates. She would smile and thank me and dive right into the chocolate. Once she was in a nursing home I brought her cards and balloons but they were mainly for me; to show others that she was not left in the home and that she was still cared for. They made me happy even though she never noticed them. Of course we know the chocolate was still a winner until… That last Mother’s Day when she was on hospice I still brought her some balloons to tie to the foot of her bed. I needed something cheerful in her room at that time and I wished so much I could feed her chocolate one more time. She died a few weeks after Mother’s Day and I packed away all of the cards we had taped to her wall and put them in a safe place – sigh.
Whatever you do for your mother for this day depends on you and where your mom is with the disease but I can say this with 100% assurance – the best gift for her is for you to be there for her and with her and to show her love. Even if she doesn’t or can’t respond I firmly believe that in there somewhere she feels it.
I know I’ve gone way off track with what my original intentions were with this blog but I hope you indulge my zigzagging 🙂 Sometimes when I think back on that awful trail that went from mom being mom to her being just this animated shell, I find myself thinking what could I have done better (which is nothing more than a lesson in frustration and futility) but lately I have thought about what she (and probably many others with dementia) may have felt like during this.
Mom was fiercly independent, could drive her Fords with the best of them (Dad used to call her lead foot), always made and kept that hair appointment like clock work, and at one time was quite the fashion plate. Of course later after 6 kids she turned into a mom and wore jeans and sweats but they were always neat. But when the Alzheimer’s started to take her away all of that changed. She voluntarily stopped driving or maybe dad did some subtle suggestions. At least we didn’t have to fight with her about handing over the keys like so many other families have to. I don’t envy you who have/had to!
She kept the hair appointments for awhile and then that fell off with her resorting to wearing all sorts of hats. Then she stopped bathing and would often take the dirty clothes out of the washing machine and put them back in the closets before dad had a chance to wash them. And of course there was the phone routine as I’ve mentioned before where she would call me to look up a phone number for her using the excuse of she couldn’t find her phone book, read the print in the phone book, or just yell at me to do it because she was my mother and she was asking me to do it! She used the guilt card as long as she could.
Sometimes she would look embarrassed when she would forget something and other times she would get angry…at one of us. But in hindsight, she felt both. She knew, for awhile anyway, that something was wrong and she couldn’t do or remember things like she used to. Fear, anger, and embarrassment were probably all mixed in there and she had no idea how to handle it. Adding insult to injury, we didn’t have a clue about what the hell was going on either so we had the same emotions going on except we weren’t the ones with dementia. We could still drive and cook and do laundry properly. All those skills were leaving her bit by bit and all she could do was thrash about in frustration.
I will confess to not being the kindest most sympathetic person in her world when she was going through the early stages of this. I was dealing with raising young children in a crumbling marriage and having two sick parents (dad had diabetes) added to that mix made me a frustrated and angry person which sometimes came barreling out at mom and the rest of the world. I had my fears too! I was afraid that I would be stuck with taking care of them (which turned out to be about 80% true) I was afraid taking care of them would take a big amount of my time (it did) and I was afraid that I was losing my parents. No matter what we may say or think or how old we may be, we will miss our parents when they are gone. In this case my “mother” left me long before her body decided to leave. I had a mom but she wasn’t mom.
Caregiving ain’t for wimps let me tell you but conversely, being the one cared for ain’t a walk in the park either. Imagine having someone you gave birth to now doing for you what you once did for them – bathing, dressing, feeding, etc. Imagine that you can’t do for yourself things that you have done for decades – dialing a phone, driving, playing a piano, baking the cake your other half has always loved. And imagine leaving the home you once knew to live in a strange place with strange people who hopefully are going to take good care of you. Heck! I freak out when I can’t find my phone or keys or recall a name let alone having to deal with what those with Alzheimer’s and dementia must go through. It is scary! I wish I had known this when mom was alive and had shown her some kindness instead of my frustration. Once I began to come to terms with mom and this damned disease I became kinder to her and in turn I wasn’t as angry or fearful.
Recently the hubby and I were leaving the grocery store to head to it’s gas station when I noticed an older gentleman wandering the parking lot searching for his car. My dementia antennae went up! As we pulled into the gas station I jumped out of the car to watch him wander back and forth among the rows of cars. Finally I told the hubby I’d be back and I walked over to the man and with a warm smile I asked him if he needed help with his car. He was embarrassed but I knew what to do. I asked him what color was it and what make. I made jokes about not knowing a Chevy from a Toyota unless I could see the name on the car.
I talked gently to him as we walked back and forth looking for his white Chevy. Couldn’t find it so I asked him did he remember if he parked it close to the store or further back; eventually I asked him if his car had an alarm on it. He wasn’t sure and said he just had new tags put on the car and that’s why he was confused (I knew that as a sign of embarrassment) as he handed me the keys. Fortunately his keys had a button on them that when pressed would sound the horn. I pressed, it honked, we found the car! He thanked me and apologized for not recalling where he parked. I smiled and told him it was alright and we all forget where we park in these big lots sometimes. But before I went back to hubby waiting at the gas station I showed him what button to push to sound his car’s horn if he needs to find it again.
He drove off slowly and I prayed he got home safely without hurting himself or anyone else. Was he in the early stages of dementia or just an old guy with a momentary lapse in recalling where he parked? Either way it happens and is happening across the globe…but I’m so happy I stopped to help him; to ease his fears that day.
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.
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.