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.
I’ve been busy with life and trying to enjoy myself as much as possible but whenever my ears perk up at the sound of a conversation about caregiving I’m right back in the moment. Case in point, while waiting to board a plane I overheard this woman talk about being a caregiver to her widowed father long distance. Her caregiving was compounded by her own health issues which included some shoulder problems.
She was telling this young man all about her health issues and how she wasn’t able to lift her dad; how they had a home health worker to come in to do that for his bathing, etc. and how she was probably going to end up moving out to wherever to help her sister with him. I thought the young man she was talking to was someone she knew but as he said his goodbyes he was just an ear to bend for her.
Well someone else came up to her (merely to check out departure times) and away she went telling the same story again. I began to wonder if this woman had any other life than talking about her health and the health of her father. Seriously. But I can understand…a little. I feltho a bit ashamed when I had thoughts about the poor person who was going to be seated next to her for a four hour flight. I know, shame on me.
Then there was this meeting I attended where we were congratulating someone on being promoted and being transferred to a different state. I had a chance to talk to her later that day in private when she mentioned that she had to tell her family that she was doing this transfer for herself and her life. Their jaws all dropped because – guess what – she was the responsible one for taking care of her father. Mind you, she had help from her siblings but the majority of the responsibility was on her.
She had “the chat” with her family members and told them that she was the only one looking out for her (she was a divorced career woman) and that she had to do for her. Eventually they saw where she was coming from and they will have to figure out how to do things without depending on her. Amazing, but really not so, how when it comes to caregiving there is almost always some one individual who is THE responsible one.
Often that responsible one puts various degrees of their lives on the shelf in order to do that job; I did. Oh I tried to juggle the whole scene of wife, mother, employee, sibling, caregiver as best I could but in the end all of the hats I wore suffered some in quality as I tried to be the best caregiver I could for my parents.
Being the responsible one is a major task that many do not fully understand the ramifications of unless/until they too become that person. After my tour of duty as I call it was over, I didn’t want to be responsible for anything for awhile even though I had become so used to calling the shots that I would often have a tug of war with myself over letting go or keeping the control. Being responsible is a weighty task physically, mentally, emotionally, financially, etc.
Are you the responsible one?
This past Sunday was Father’s Day and while I still miss my father, I wasn’t that broken up about it…this time. How emotional I get about certain holidays and birthdays varies; I think I am moving on and I am not that saddened when these certain times come around. Oh sure I still and will always miss him but I just don’t cry like I used to. But on to what this post is really about.
Dad, like mom, was not about going to the doctor for anything. Home remedies where their mantra even though they did take me to the doctor because I had asthma but as for them? Short of something major – and I do mean major like needing stitches – they never went. So as mom continued to spiral down into Alzheimer’s, his body was failing him and an insidious disease was beginning to creep through his body.
I had noticed that dad was limping more and my concerns were brushed off with the cursory “I’m fine, just getting old!” At the time he really wasn’t that old (late 60’s, very early 70’s) but I knew something was wrong; again as with mom not what. Push came to shove and after some pleading and nagging and his realizing things were not getting better I found a doctor to take him to. I believe he was an internist and I regret that I ever took him there.
Why? Well it took hell and high water to get him and mom to that office (I had to beg them for a time period when other people wouldn’t be there as by this time her behavior from the dementia was getting out of hand; more about that side of the visit later) and once there I had to stay out in the waiting room with mom to keep her from bolting or doing something not socially acceptable. Therefore I couldn’t go back with dad to ask any questions or to express my concerns.
Dad was having great difficulty walking by this time which was so different from how they both had been a few years earlier before mom’s dementia came calling, when they used to go mall walking; and he often had to hold onto things like walls or chairs or whatever was handy to move around. When he came out from the exam room mom made straight for him and began to tug at him faster than he could walk towards the door out.
I had to try and do three things at once: watch out for mom, watch out for dad being pulled by mom, and try to have a conversation with the doctor. The doctor told me that he felt that dad had the beginnings of Parkinson’s based upon his quick assessment of taking vitals and watching him walk back and forth; he had the shuffle walk, stiffness, and poor balance which can be attributed to Parkinson’s. I don’t recall if he was given a prescription or not although I do have a vague memory of trying to keep the two of them together at a pharmacy one time.
If there was a prescription given I am sure daddy took it for a few days, didn’t feel any change in his condition, and then stopped taking the medication – sigh. As time went on his ability to walk became more and more difficult with him having to use a cane and then…. I will save the and then for a future post because guess what? He didn’t have Parkinson’s. It was something else, something that eventually took both of his legs and eventually his life – diabetes. What he was experiencing were the nerves (neuropathy) and blood circulation in his legs being damaged by that disease.
What I am trying to encourage you who are at any stage of caregiving is this. No doctor on this planet is God. They make mistakes and some of them are really crappy. This doctor didn’t test dad for anything; he just had him walk back and forth. I’m sure dad did not tell him everything about his symptoms and that is why I wish I could’ve gone back there with him. Maybe if he had gotten a proper diagnosis the diabetes might have been controlled and his standard of living might have been better. Maybe. I implore you that have loved one you are caring for to do your damnedest to talk to their doctors (if and when you can get them in) about the symptoms and signs you see about their health.
True, medical professionals go a bit bonkers over patients who come in with a self diagnosis after having seen one commercial too many or after having surfed WebMD.com but I’d rather you drive them crazy and ask them to rule out something than to miss it all together. You have to be your and your loved ones advocate when it comes to medical care. Doctors don’t always get it right, patients who are afraid, elderly, sick, or with dementia don’t always tell the full story.
When in doubt (and if you can afford it) get a second opinion!
Oh the things she would do when dementia first started in on her. Some of them were funny as heck and others were scary and downright dangerous. I have a friend whose mother had Alzheimer’s too and her mom would put things like the dishes in the freezer. My mother never did that but she developed other weird quirks.
I’ve mentioned the calling me to look up a phone number for her but she had others. She was afraid of direct deposit of their retirement checks into the bank and HAD to take the check straight from their mailbox to the bank and then take out a wad of money to keep in the house and on her for whatever reason she had.
I begged her to do direct deposit for their safety sake but she never did it. She would lay in wait for the mailman when it was time for the checks to arrive, would grab the mail, and then make poor daddy drive them to the bank, do business there and then back home. Only to go right back out again to pay their utility bills – with cash – at the grocery store as soon as those bills arrived.
It was like something in her head was telling her that if she didn’t pay the light bill on the day it arrived they’d cut off their power. But that money thing was terrible! She always hid some money in the house; like with some old TV programs where they kept the money in the mattress, she would hide it wrapped in foil in the flour canister or even wrapped in foil again (what was it with her and foil?) and buried in the crisper under the veggies. Part of that was because she was a child of the great depression but that was compounded by her increasing dementia.
Mom and Dad never had a checking account or a credit card and they paid for everything in cash or money orders. It wasn’t until her dementia had really progressed that I was able to get dad to do direct deposit but that was as far as I could get with them. We never knew how much money mom carried around on her (yes! on her) in that wallet of hers that she either had in a front jeans pocket or tucked in her bra (that used to embarrass the heck out of me and my sister) until she had to be admitted/committed to a psych ward because of something she had done (more about that one later).
It took me and two big burly orderlies to wrangle that wallet away from mom when she was admitted and once I took the myriad of rubber bands she had wrapped around it off, I discovered that she had been walking around with almost $500 dollars on her all in twenties! I nearly freaked out thinking that mom had been walking around with all of that money on her and “what if” someone had tried to hurt her as she was out and about.
Here being put into that psych ward and separated from dad for the first time since he was in the military was heartbreaking for me and Dad and I’m sure in some kind of way Mom was hurt by it all too. It wasn’t a pleasant or beneficial experience and another that I shall delve into later. But it was yet another thing we had to worry about and deal with with my parents until they both entered homes.
Finances are a big sticky thing to deal with when the person is your parent and it can get very complicated when your loved one has dementia regardless of your relation to them. There can be so many variables at work at any given time. They can lose the ability to manage funds and either over spend, fall prey to con artists (and some of those might even be other relatives), or hoard the money in some interesting places. When you try to help they may vacillate between appreciating the help to accusing you of theft all in one breath.
If you can get the legal papers to let you help or fully take over their finances then life will be so much easier but up until that time all you can do is continue to try – exasperating as it may become – to help them as best you can and to watch out for warning signs that something might be wrong. But however you deal with your person and finances try to be kind with them even if you want to scream sometimes because losing the ability to do things that they have done for a very long time is embarrassing, depressing, and scary to them.
I was going to proceed with the progression of life with mom and dad as their health spiraled out of control but a good thing happened yesterday. I was a guest speaker (I suppose that’s what you could’ve called me) at an online Twitter chat – #AgingChat to be exact (I do recommend those of you with a Twitter account to follow it and @Beclosedotcom) The topic was “Is it Dementia or not?”
It was a great chat but what pinged me the most was two questions: 1. How do you tell the one who is ill that they are ill and 2. How to you get family members to help out. For question #1 the best things suggested was to either let their doctor tell them or to sit down with them in as calm a voice and manner as possible and try to let them know your concerns without sending them into a panic or giving them news that may be interpreted in a very very bad way. Remember, when trying to tell someone you think they may have some serious memory issues that can be absolutely terrifying to them; the could react angrily or burst into tears or any other combination of emotions.
In my case when I tried to tell mom as awkwardly as I could at the time not knowing what the hell I was dealing with anyway, mom nearly bit my head off! She became like a cornered animal claiming I was out to get her, get into her business, and try to say she was crazy. I backed away as fast as I could and gave up trying to convince her she needed to see a doctor. I wish I had had more resolve to keep plugging away at getting her to a doctor.
But what about asking for help from family members? In some wonderful families there occurs this thing called a family meeting where everyone who is/will be involved get together and they hash out how things will be handled. Sorry to be so cynical but in my lifetime I’ve only read about this; I’ve never heard directly from anyone who had a cohesive family unit deal with someone ill or with dementia in an evenhanded manner.
Nope! What I dealt with and what several people I’ve known have dealt with is one person being THE responsible one with others helping occasionally (sometimes after being upbraided by the responsible one) or with family members either saying they will help and don’t or just make all sorts of excuses to not help at all. There is always a blow up or two..or three or four when you have these family dynamics going on.
When I first tried to talk to my siblings about mom I got a bit of a brush off with phrases like “Well she’s old what do you expect!” and “Heck, I forget things and repeat myself too!” I’m sure some of you have heard things like: I don’t have time to take off work to help. I’ve got a family at home to take care of. I don’t like the looks and smells of a nursing home. S/he isn’t going to know I visited or not (cringe). I live too far away. This also may apply to some spouses/significant others. Sigh…
At first I had one of my sisters help me out pretty often but as time went on that lessened, another would only come visit mom if she went with the other sister, and two lived out of state and only were able to make phone calls. I appreciated those phone calls. They let staff at the nursing homes know that I was not alone in caring about moms care.
Ultimately everyone I’ve known who has been in this situation tried with family members the best they could until an explosion or until they reached a point where they tired of dealing with the stress and drama and just dealt with it themselves. About this time is when hired help (if affordable) such as a visiting nurse or aide or adult day care comes into the caregiving equation or the caregiver gets very very tired and stressed themselves.
But as I’ve said before, you have to push through and you will push through. Trust me on this. Ask the family doctor for tips on how to bring up your health concerns to your loved one. Seek the assistance and experience from agencies such as Alz.org who have a hotline number that is 24/7. Find either an online or in person support group. And try to talk to family members about helping out or what to do but know how far to go not so much for their sakes but for yours!