Archive for September, 2014
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!
A blogger friend of mine recently wrote about the paranoia she has to deal with with her mother who is in an assisted living facility. Things were occuring like – blaming the cleaning staff for hiding certain items and that they don’t want to come and repair a leak in her bathroom. In both of these instances the staff hasn’t hid a thing and the maintenance folks have come many times to her call about said “leak.”
We all have our moments of paranoia. We’ve all had the feeling that someone at work is out to get us or that a neighbor is out to make us miserable deliberately because they play loud music. But it’s different with those who have Alzheimer’s and dementia. I am convinced that it is a combination of things with their paranoia. It’s the brain misfiring, it’s their fear of losing their mental sharpness, it’s embarrassment and probably more.
With my mother, she felt that when she locked daddy out of the house as he went outside to dump the trash that he was some terrible man who was trying to break in and attack her. When I tried to take dad to the doctor one time she accused me of trying to take him away from her. And there was the times when she would greet me warmly when I came to visit and would give me an armload of things to take home with me (her clothing, pots and pans, food) but by the time I reached the door to leave she’d snatch them back and berate me for trying to steal from her.
Sadly, it’s part and parcel of the disease and something that you as the caregiver will have to find a way to work with your loved one with. For example, initially I would try to “reason” with mom by telling her that she gave the stuff to me; clearly I wasn’t and didn’t win with this. Shortly thereafter I learned to come up with creative ways to handle her giving me things.
I would refuse by saying I had too many already or I would accept and put them down on a table in the kitchen and just act like I didn’t know how that pile got there either. Sometimes if it was something I wanted I would put the item down and then later in my visit I would ask her if I could have the item I really liked it. There was a 50/50 chance of that last method working but it was better than an ugly confrontation.
With “lost” things others have come up with ideas like “let’s clean up the house, mom” or “let’s fold up the clothing and put them away.” Of course you can always resort to having one person take the loved one somewhere while you go through the home or room to hunt down the lost item. But be careful with that method because those with dementia are very tied to their home/room and hate being away from it for too long. Mom was notorious for wanting to leave the house to pay a bill as soon as it hit the mailbox but equally she wanted to rush back home.
When it comes to being locked out, as a caregiver always remember to take your keys with you so that you can get back in if locked out. If you are helping someone like your parents as I was, then have a set of keys yourself (that in and of itself may take some doing, I was accused of wanting a key so that I could have my gang come in and rob their house) to let the person locked out back in. This drove me nuts driving for almost half an hour to let my father back into the house. Another choice is if there is a neighbor that you and your loved ones know and trust, give them a key to help let someone back in…or at least give them your phone number so that they can call you if something goes wrong and you are needed.
Paranoia happens – there are ways to deal with it.
Sorry I have been gone for an entire month (give or take a few weeks) but things were happening and I just could only focus on so many things at a time…and then I realized it was “that” day again. My caregiving days have been over for four years for my mother and nine years for my dad but those memories and scars still linger to this moment; they will never go away, they just get less painful as time goes on. In preparation for some remodeling I have been girding up my loins and going through the house getting rid of things that either needed to be donated or just thrown away.
Let’s just say the big trash can was very very heavy by the time I was through. A couple of the boxes I went through and consolidated into one contained things that belonged to both of my parents. I was actually able to get rid of some more things this year. Right after they passed away I clung to their belongings as if through them I would have some psychic link or something like that with them. I didn’t want to totally let go – I felt that it would be callous of me if I did. But that is just another stage of grieving and eventually as time has gone by I have gotten rid of more and more of their belongings…but I will never get rid of it all.
I’ve gotten much better with feeling blue when it’s their birthdays, certain holidays, and the days they left this world. I still cry a bit and there are often big sighs as I look at their pictures but then I get back to the here and now and acknowledge that life goes on. This time I almost forgot it was the day that I watched as my father’s spirit departed his body (yes! I’m pretty sure I saw that happen!) If it hadn’t been for something someone else posted about hurricane Katrina I think I might have let the day slip entirely.
Dad was in ICU on life support as the news covered that horrible event of Katrina and it’s aftermath. I cannot separate the two in my head anymore; they are entwined with each other forever. But it all came back to me as I was rummaging through the boxes and decided what stayed and what went. For someone who often forgets where she put her keys and you don’t want to know about how many times I forget where I left my phone, as I went through their belongings I could remember where things came from, when I gave them to them, and where they were placed in their rooms at their nursing/veterans homes. Funny how memories can be, huh?
And then there was this one plaid shirt that belonged to daddy. I looked at it, saw my handwriting in the collar of it to help the laundry room folks know who it better come back to, and then it was put it in the throw away pile. By the time I was satisfied that I had culled the herd enough for this year and was getting ready to put “their” box back into storage, I had this pulling sensation inside that whispered to me that I needed to keep the shirt. I picked it up and held it for a minute before I realized that this had been a favorite shirt of his before he took ill. In the box it went.
A couple of days later I was going through some old photo albums taking cell phone pictures of some of the photos to send to my son. He loved the ones I sent him of him with his grandparents when he was a child. And then there it was! A photo that I had totally forgotten about. It was my dad, my son, and some other relatives sitting around in the living room playing a game and guess what dad was wearing? That same plaid shirt I almost threw out! All I could do was close the album, put it away carefully, and cry. I’m so glad that I didn’t throw that shirt away. Maybe one day I will but not this time – not this year.
You are still missed and will always be loved, daddy.