progression of dementia
My DH's dementia seems to be getting worse and I'm not handling it well. Any thoughts/support is appreciated. His anger is worse and more frequent, sundowning is part of this. Just last week, DH and I went to see the neurologist and DH was started on two new medications (DH fights me on medication and doctor's appointments - saying he's fine and doesn't need either any more - he has no understanding that he has dementia). When things have gotten really bad, I have told him - calmly - that he has dementia and he doesn't believe me. Just gets angrier.
Pretty much everything (large or small) is a reason for me to get mad. Housework, medication, food - you name it. Previously, there were enough good days, I was able to handle his "blow-ups." Now, there's not too many good days. I'd like to blame it on the pandemic, but honestly feel it's more that he's getting worse.
It's gotten bad enough that I plan on moving up my retirement (I'm 65) to the end of March so I'll be more available to him and present - even though I work from home.
There aren't any specific questions in here, but I feel so lost!
Thank you for listening!
Comments
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I can tell you one thing, quit telling him he has dementia. Your goal with every conversation with him is to keep him calm, which probably means agreeing with his statements or at the least, being noncommittal about what he is saying.
You are going to have to discover workarounds to whatever he is resistant to. If he doesnt want to take meds in the pm, maybe he will take them in the morning. Maybe they need to be put into his food. Maybe he can not take them at all.
You were not specific about other issues, but get over the idea that you cant lie to him. (some people call them therapeutic fibs). Tell him whatever he accepts as long as it keeps the peace for him......and you.
Read a lot of the postings here. Your trials with him are described over + over with other LOs as well as advice about how to respond + (sorry) manipulate him to keep him safe + calm + reduce stress for yourself
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Terei is correct, it's a waste of time telling him he has this disease. It will only frustrate you even more. He is suffering from Anosognosia. My DH does too. They just don't believe there is a problem. You are going to have to come to terms with what you are dealing with, it's not something you can control. However, you can control how you react to him. Learn to let things go, most of the stuff is small stuff in the long run. There a lot of "uh huh" at my house. I'm calmer, he's calmer. I let him know I hear him and what he is saying, it makes them feel like they are being heard, even if it's not something you are going to act on. If you can spend some time looking on youtube, there's a ton of helpful videos regarding caring for a LO with dementia. You need to keep a calm demeanor both in speaking and visually be calm. They pick up on the slightest indifference. It will be one of the hardest things for you to do, but it will make your life a whole lot better than arguing with him. Don't take me wrong, it's not your fault, but the more you can conceal your anger, the better for both of you. I wish you luck, this is the place to be to vent and get helpful information. It's been a God-send for me.
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Trish F, the previous responses are exactly what I was going to say. The day I found out my husband had dementia was the day my life because easier. I know that seems completely the opposite of what it should be, but in the earlier stages, I think its true. For the past 2+ years there has been a lot of tension and arguing in our household. It made me super stressed and very unhappy. Now that I've accepted his diagnosis, and understand the root cause of so much, I can change how I respond to it.
The half sentences that I was constantly trying to figure out.....I now just say "oh really", or agree. The misplaced items that I had to constantly search for, now I just expect it and prepare myself for the little treasure hunts. The strange clicking together of his teeth that I was always asking him to stop doing, now I just ignore it. So many little things that caused so much grief between us for several years I now just understand are out of his control and part of the disease. By accepting all of this instead of trying to change them, our household has gotten to be a much calmer place.
It doesn't change the fact that he will get worse, and there are going to be tough tough times ahead, but for now, I can improve our daily lives by changing my reactions and trying to understand his.
Hang in there!
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Just in support of what’s been said. It’s really hard, but he is sick, his brain is broken, and you have to be the one to Let. It. Go. Arguing wastes your energy and time. Stop telling him he has dementia. Start saying (as said) “uh huh”.or “how about that?” Or “really, I know.”
You learn to put things away, or otherwise he’ll lose them. Or you unload the dishwasher because he can’t (lots of things like that). You learn what pitfalls to avoid, what you just have to do yourself because he simply cannot, no matter how much you tell him.
When you start to argue, stop and think a minute. Does it matter, really? Does it affect his and your safety? Sometimes you just have to agree, or say something meaningless, and let it go. That, and fiblets—done in the greater good of preventing his upsets, which just make things harder for you both—will go a long way. Yes, dementia gets worse, and he will get worse barring some other health catastrophe. It’s not easy, I know that from hard experience. But the alternatives are even worse.
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I'm going to chime in here and agree with everyone else. Before I found this forum last February, I was constantly trying to reason with my DH. I would calmly explain that he had dementia, usually several times a day. It wasn't working at all, you'd think I would have learned from that, but I didn't. I had done a fair amount of reading on dementia, but what really brought it home was hearing from posters with first hand experience. Now, I deflect and defer, and have gotten used to using fiblets to calm him down. I too had to come to the realization that his brain isn't working right, and the old rules were out the window. Now I never use dementia as the reason for something, he can't understand that and thinks he is fine, no words of mine are going to convince him. And he seldom escalates into anger because everything is no longer a power struggle. He says he has to go to work, I tell him he's working from home due to COVID. He wants to go to a meeting, I tell him someone called to cancel. And --- he buys it. In the old days, I would try to explain that he couldn't drive, couldn't work etc because he has dementia. All of this has made me calmer, avoids arguments, and has let him calm down. It really does help.0
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If he does not respond to your calming demeanor and other helpful strategies you implement, it may be time for a consult with the doctor. When needed, a meds adjustment can improve quality of life. Anti-depressants and an anti-psychotic greatly improve my husband's ability to cope. Good luck to you.0
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I appreciate all the helpful and knowledgeable feedback. So, when he asks what's wrong or when can he stop taking medication because he's well, should I just say the doctor is working on it?
I'm hoping the new medication will help!
Thank you for being my support system...
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One thing is for sure. We all have to learn how to get through this disease as easy as possible. I found the thing that helps me when my wife does things that make my day harder, is to tell myself it's OK because it's not her fault that she can't remember that I just told her not to do that yesterday. And the day before, and the day before. So when something happens, I just clean it up (assuming that's what need to be done) without saying anything to her about it. That makes it much easier on her, which makes it much easier on me. It's my choice. I can either clean it up, or we can have an argument about it, and be stressed. Then I can clean it up. I also do my best to appear positive and happy. And I tell her I love her.
We have to pick our battles. For instance, she might not want to comb her hair. But unless we're going somewhere, it doesn't hurt anything if she doesn't comb it. But if she decided she was going to fix dinner (thankfully that hasn't happened), I would step in because she hasn't cooked for more than a year, and I'm sure she can no longer cook. And it would be dangerous for her to try. If she wants to go outside to look for our other dog, which doesn't exist, I might let her go in the back yard to look for it. It is fenced in, and she does not know how to open the gates. But if she wanted to go in the front yard, I would go with her, or if I couldn't do that, I would insist she wait until I could accompany her. If she walked more than a few houses away, she would not find her way back home. So it's up to me to make sure that doesn't happen.
So yes, we will have our battles to fight, but we have to ask ourselves if the current situation is a battle we need to have. And we have to remember that our brain is the one that is mostly working properly.
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Trish,we posted at the same time. Depending on his medications, you might be able to crush them to put in food (applesauce or something). But check with a pharmacist or doctor to make sure crushing them is OK. Some medications should not be crushed.
Another idea is to have something on hand that he really likes. Maybe a piece of cake or something. Tell him after he takes his meds, you can both have a piece of cake and coffee. You get the point. But if he wants the goodies, he has to take his meds.
My wife also does not want to take her meds. So I do something really goofy. When she refuses, I say in a very high pitched voice "Yooooouuuuu have to take your pills"! Yes, it really sounds off the wall, but it works. She laughs every time, then eventually takes her pills. It works for us, but it might not for you. Just think outside the box to try to come up with something, even if it sounds ridiculous.
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The doctor will be trying medication as a test, you’ll have to see what works. You are as much in the dark as he is, he needs to know that you are beside him.0
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Trish F, I know very well how difficult it is to deal with an angry spouse and it's not easy for a caregiver to always stay calm. "Good days" are long gone. Could you tell your husband that it's time to take his "vitamins"? When it's time for my husband to take his meds, I have to place his "vitamins" in his mouth. He has never understood that he has dementia.0
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Hello Trish, your life is a description on mine in the beginning. The last couple of years I've just come to accept what is. As all other have said, non-committal and sympathetic responses and just accepting that nothing is where you expect it to be is an excellent start. We are both retired so I actually stay with her all day, helping and keeping track of the things misplaced so I can replace them. She folds laundry (sort of) but I put it away.
Sundowning is tough. Seroquel induces some sleepiness so I time her pills to try to keep her rested. It used to be 2 naps a day, no naps now but she still sleeps 12+ hours at night. We now go to bed around 5-6 after a very early dinner at 4. She sleeps though the sundowning period. I get up after 2-3 hours and have time to myself for 3-4 hours. For computer work, or whatever.
Medicines are tough. I use the "lets take our pills" and we both take them - I take an aspirin or whatever. When she mention she has forgotten things I say "yes the memory goes as you get older. You help me with my hearing and I help you with your memory" The Covid virus provides lots of excuses, we can't travel because... You can't go home because... I have a short paragraph I repeat about all the danger of travel and getting together with friends because of the virus. I repeat it several times a day as needed and after 10 months it seems a little has sunk in.
What other meds he takes you have to judge in consultation with your/his Dr. We've cut some and reduced others. I tend to buy things in 2's now, we can usually find at least one.
Reading here I firmly believe men are the most difficult patients. It's not a happy road we are all on, I find a challenge in figuring out solutions that work for us, making us both as happy as we can be under very difficult circumstances. I wish you luck.
Stay here, read lots, and keep trying. Good luck, Rick
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All of these posts sound so much like my life. My DW told me last night that her money has been stolen. This is about the fourth time in as many months. She was angry and upset. So, today that will be my treasure hunt when she wakes up. Her bedroom makes the hunt interesting because of hoarding and I am apt to find several item I have been missing. Like my comb, notepad and other insignificant items that I don't really miss until I find them.
I feel like we are on a cycle of good days and not so good days when the suspicion, shadowing, and lost money issues return. In many of the good days I wonder if there is a problem as things go pretty smooth. The cycle is then repeated and it last long enough to keep me confused. The loss of recent memory is consistent expect when a family member visits then DW has a line of chit chat that represents a significant recovery until after the visitor leaves.
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OMG - so many great suggestions on how to deal with anger, obstinance and more. I sure wish our LO's (and us) didn't have the go through this.
After reading and learning from others, I feel stronger - I can get through another day.
Sending you all strength and hugs! (I don't know about you - but hugs are long gone and not just from COVID).
TF
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Trish F, sometimes just saying "the doctor said you have to take this to stay well" works for my partner. Lie and say it's not because he's sick, but so that he won't get sick. May not stick, but might be worth a try. You didn't mention what meds he was prescribed, but there are some that also come in liquid form (Seroquel for one) if you can't get him to take a pill. Paranoia is a really, really hard thing to treat. Wishing you well....0
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I was going to say, if he likes/respects his doctor, you can fib and say “doc wants you to try this”, or “doc is thinking about it, meanwhile he said take...” or “we’ll talk to your doc about this.” Etc. Also as already said, you can say it will help you stay well (which does not imply he’s sick).
Otherwise, try telling him it’s vitamins, and you take one too. (You can palm it or take an aspirin or whatever). Or tell him it will help him do (something he’s interested in or concerned about).
Many drugs can also be made in liquid form, easy to mix with other drinks. Ask your pharmacist. Also ask about grinding them up to add to food.
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Oh, thank you! I just realized that the 'tapping of his feet together' when he's watching TV, and the 'playing with his silverware at the table in the dining room' are behaviors associated with my DH's dementia!
The tapping of his feet together, and the clinking of his silverware together drive me crazy. But I now realize that it is best if I just ignore it......no point in nagging at him to stop.
Reading your posts often have great nuggets of wisdom that help me, day to day.
Elaine
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I'm taking all suggestions and comments to heart and am trying as the situation warrants. Here's one that worked (so far). I told me DH that I was taking my night-time medication (a lie) and got his ready to for him to save him time. He took 3 pills w/o incident. I love when there is a win - they don't come easily these days.
I'm also focusing even harder on saying to myself "what does it matter," if his comments/behavior truly isn't a life altering situation. Medication is important and I that is my primary focus.
He often changes clothes 2-3 times a day --- laundry is fun (that's one of many mantras), but I'll take it since so many others have difficulty with hygiene.
Please know how much I value each of you - we truly are in this together!
Trish
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Trish, I'm glad you got a win! There will be more. Here is a link that might prove useful. Dementia and Sundowning: Tips to help you manage sundowning .0
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Glad you got a "win!" My DH also changes clothes frequently throughout the day. He never puts anything back into his dresser drawers, instead piles them on a table we have in the bedroom. Any flat surface is a target... I have taken the advice from others here to lessen the amount of laundry, I give the table items a good smell test, if they don't smell, they don't get washed.
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I feel your pain. Going through similar stuff with my husband.
I'm having trouble handling my own anger and resentment at the whole situation.
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I'm at the start of this journey. My husband was diagnosed Jan. last year.
How do you get to that acceptance place? I'm still in the 'mad, resentful, frustrated' place.
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I think many people manage calm and accepting by being mad at the disease and situation while seeing their LO as suffering with it along with them. Rather than seeing the LO as the problem, we can be frustrated with the problem and supportive and accepting of our LO who is the victim of it. Reminding ourselves that the frustrating behaviors aren't really something our LO is choosing to do sometimes helps.0
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SuperSewer I don't think the two are mutually exclusive. I am accepting of my DH's dementia, but I am still in the mad, resentful, and very sad place0
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SuperSewer - It takes time. I'm sorry to say, at least in my case. I was full of rage and anger, this was not what I expected in my upcoming Golden Years. I never though my DH would forget all the wonderful times we had over the years, been married 32 years, lived together 7 years before marriage. After hitting my head against the wall over and over (figuratively) I came to the realization, that it was I who needed to adjust and change, my DH was not capable. When I accepted what was happening, it truly helped me to cope. Not to say I don't still get angry and feel cheated. To make the best of what I have, I learned to be as patient and forgiving as I can be. In other words, I pick my battles, he can ask over and over the same question, I just keep answering the same way like it's the first time he asked. When it really gets on your nerves, go to another room and cry, scream (quietly) take 10 very deep purposeful breathes. You can do this! You can also come here and vent as much as needed, we understand.
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Don't tell him he has dementia. He doesn't have the capacity to understand. We are all in the same boat. All we can do
Is our best. Mine fights with me on everything too.
I tell him fibs to get him to comply.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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