Caring for spouse with dementia. Anyone else going through this?

If you loved your spouse before the disease, but couldn't tolerate them during the disease, the love will return as you watch them dying. My husband died yesterday. I stroked him, talked to him, encouraged him to go and watched his last breath. I hated to see him suffering and will always miss the great man he used to be.

I am new to all this as well....I feel the same way there are mainly aging parents?What about us the Wife and/or Wives that have a husband that is at Early to Moderate onset Alzheimer he will be 67 in June disease that has made him mean w/not much empathy about anything.Its Very Emotionally Draining.He refuses to go see a Physician for many other issues?I am at the end of my rope...

Thank you for responding with how it was with you. And God bless you also.

Trailblazer, I totally sympathize with you - I was sole caregiver to an abusive partner, he was an alcoholic and had been verbally, physically, mentally abusive to me for years. He somehow felt that I owed him support, love and sex and I will admit that for years I just had "OMG just shut him UP!! sex with him" however as time went on - I hated it and him for it . When he retired with nothing but a small SS amount the alcoholism became worse and the dementia started to take over, I had to continue to work to support the household and still do, as his money did not cover what he was drinking. Finally his drinking, lying (to himself, to me and to his children to cover the alcoholism) and abuse became more than I could deal with as his health and mental capacity continued to diminish. I sat him down and told him that I would not continue any relationship with him unless he was willing to change - he of course told me he would change - confess to his lying and.... and... and... Very quickly it became apparent to me that no change was happening and I was not able to make myself kick him out, he had no place to go and his medical and mental issues were becoming worse, he of course felt that since I allowed him to stay that we were back to our normal abnormal. I did not continue to remind him that we were over as that just created a big fuss - but stuck to my guns about the no sex. I felt very strongly that I was doing enough, supporting and caring for him as he became unable to do anything for himself, walk or toilet himself, I had become enough of a slave to him - was not going to whore myself to him. When he asked and still continues to ask about sex, I just say sorry but that is not something I am able to do and walk out - no further discussion - he does like it but it does seem easier for him to accept that it is me not him that "can't". He got so bad, not able to walk, falling down (weighted almost 300 pounds) and not able to toilet, that I had to put him in nursing home and things are better, he is safe and I am starting to heal as caring for him was a huge drain on my physical and mental health. He still asks me every time I visit and I visit often if we are still " a couple" and I assure him we are and that he is the one and only, and will continue to tell him that as long as it is reassuring to him.
Caregiving to someone you love is hard, caregiving to someone who is abusive is really, really hard, just because he is sick does not mean you have to take the abuse - set your limits and stick to them - you owe that to yourself. Take care the journey you are on is a tough one - he may never respect you - but you can respect yourself. If you feel that you need outside help - get it .... at one point you are going to have to have it - and you might as well just do it. Good luck.

to emariewa9, maybe he needs some meds to calm down his aggresiveness, you could speak with a doctor. I know most won't prescribe anything without seeing the patient, but it might be worth a try. I know my dad would get nasty and swing his cane around. I think internally he knew something was wrong, couldn't figure out why, was scared. he even called 911 one night because he didn't like what my mother made him for supper. thank God the cop that showed up was also a clergy in the service, he was wonderful. even though dad kept saying all he had for the last couple of days was burnt toast and water. my dad definitely needed some meds for his moods. of course now he is in NH and better with his moods.

So far there's no violence, just an absolutely foul mouth, especially at bedtime when he can't get the p.j's on quickly enough. I have a hard time recalling how, why, we were attracted to each other 61 years ago but I do remember there were times when his attitude/behavior could be extremely annoying, very stubborn. That manner has persisted and grows worse if he doesn't get his way on some things (like evening tv shows!). So many people have much worse problems than I do and I tell myself to stop complaining to others.
Take time for yourself whenever you can--it's what I keep telling myself!
Best of luck with everything.....

I've ask him to please take matters into His own hands all he says is he wont do that it's not the same. I Just keep praying he'll forget about it but so far he never does. Thank you for advice and Good Luck with your dad also. Hugs

my mother took care of my dad until she could not longer handle (he was getting to hard to get out of bed, help to bathroom,etc.) BUT he also went thru a spell where he thought he wanted some sex, so my mom would lie next to him but she told him that he was breathing so hard that he would give himself a heart attack. Even though it sounds like your man has always been sexually driven, hopefully it will pass, otherwise, get him a girly book and leave him alone to "handle" his own property. My father in nursing home now, dementia related, but his "sexual" passing ended at his own home before going into the NH. I wish you well

Cat the key to the Meds is keeping your own log of changes, good or bad, make friends with one nurse that you can call or email, whenever a change is seen for the not so good, try not to wait until the next Drs visit (3 months) the nurse will be your in between. It took 31 days in a controlled facility ( which medicare paid for-long story) to get him properly medicated, over one year now and I have not had to have a change in his medication at all. I pray it stays like this. It is very hard, but you can get through this.

Thank you twopupsmom for taking the time to reply. This gives me some encouragement that I can keep my husband at home. Will see the neurologist in early Jan. Hopefully he can prescribe some medication that will help.

My husband also turned into a demon over a year ago, but with intense med changes in a facility, he has finally become a kind gentle man, the disease goes on, one or two outbursts a day that I can handle, but for the most part it's ok. Just hang in there, with the correct medication it will be much different. By the way he lives at home.

We all know your misery. He will go thru different stages - some more controllable - some not. Work with a doctor to try to control his behavior with meds. You have to be in control. My husband -- who was wonderful - turned into a demon. Now he's at the end and I am so sad for what happened to him.

He has vascular dementia no outside help he wont allow it grrrrrrrr I will continue to just ealk away thsnk you for your input.Merry Christmas

Trailblazer, I truly feel for you. Is it totally impossible for you to get some outside help, or, best case scenario, put him in a nursing home? In any case, you have to think of yourself first, since no matter what you say or do, it's not going to change his attitude. If all else fails, can you just leave the room when he starts in? Does he have AD or is he just a crabby, domineering old man? If he has AD, it's going to be more difficult to deal with him, but I found that whenever my husband gets argumentative if I just turn around and walk away it helped. I wish I had an air-tight solution for you, but as you no doubt know from checking out this site, we all have different situations and different solutions. I hope some of my suggestions will be helpful. I cannot emphasize enough, think of yourself first!

Thank you SWOMBO I AM FOR SURE TRYING BUT I TOO HAVE HAD MEDICAL ISSUES BUT IT MEANS NOTHING TO HIM, SAYS I AM USING IT AS AN EXCUSE ; (

Trailblazers 3, my heart goes out to you in a big, big way. Probably most of us have had to deal with our guys wishing/believing they've still got it and can still "get it on" sexually, and it's seemingly impossible for a man suffering with dementia to realize, acknowledge, and accept the fact that those days are gone despite testosterone shots and Viagra/Cialis. Male ego rules! Another manifestation of baser personality characteristics becoming dominant. Here I can only commiserate, and have little advice to offer other than that you TAKE CARE OF YOUSELF

Veronica91, thank you but cannot happen he is a sex maniac now old but still with same thoughts, and I refuse to stoop to his level old or not, when I were younger and loved his I mistook itfor love I admit it took me a long time to realize he is sick so he thinks I will go along with his crap no more. .....EVER but thank you if he loved me for Love real love I could go along but he's made the statement that if"us women" didn't have that one thing between our legs we'd be nothing and I wait on him hand and foot so I do everything I can for him but I'm not his whore. You know what I mean I just wish Notre God would take him and free me to have a life I'm not getting younger I don't want for much just a happy healthy life. Merry Christmas and thank you for your honesty.

Trailblazer 3 you certainly have my sympathy dealing with a lazy abusive old man.
One thing I have learned is the importance of sex to these old men. Yes you know he is incapable and don't want to touch him or have him touch you anyway. BUT and this is a big but sex has a very calming effect and is definitely a mood improver and stress reliever. Now I am not suggesting you jump into a little black lace number and leap into bed that just aint going to happen right? It could be to your advantage if you could facilitate an orgasm for him. Do an internet search for sex toys and see what you can come up with. If you are very brave put on dark glasses and a wig and visit the closest sex shop. The workers will be very polite and helpful if you can describe the problem. After all they want to sell you something and they won't do that if they laugh at you. Failing all that if you can help him out manually (lights out blinds drawn TV on if you like) you may be very pleasantly suprised at the change in his attitude. it will give you power and you won't feel so helpless when he is abusive. Just my thoughts.

My husband has LBD. His dementia is not very bad, but a head cold made him very sick. Now his hands shake. He has a little trouble with swallowing, but has learned to take smaller bites and chew more. Holidays have always made him depressed, but this one is far worse because he lost his driving priviledges. I don't know what to do to cheer him up.

Shirley, I take care of my husband. He has a dementia like illness.

Yes it is totally different especially when you have and old man that's an ass but cannot walk out or he'd die he is lazy and verbally abusive and does not appreciate anything I do and he complains constantly, then he wants sex (give me a break) he's 87 years old can do nothing anyway plus how can he expect me to feel anything for him the way he treats ans acts with me? It's just a nightmare that every day seems longer than the one before, if I sound harsh it's because there is just no way out except for when God feels it's time to take him, but I am running out of my life and years while waiting. God please forgive me.

No one knows how hard this is unless you've lived with it. After 5 years, My husband (63 yrs old) is close to the end. Barely 60 lbs, knees drawn up to his chest, horrid pressure wound on tailbone & new ones developing. Been thru shadowing, aggression, hygene issues, incontinence -- about everything you can think of. Now - he's so frail, weak, in pain - can't believe how this disease has ravaged him. I pray ever night for his suffering to end & for a peaceful passing. I've kept him at home because I knew a home would leave broke. Also, this disease qualifies for Social Security Disabilitywhich would give you some additional monthly income.

Widowofliving: You have been thrown into this journey far to soon. So young for all this grief. Thank God for your daughter. My children are in different parts of the country/world. Our insurance expires this year and no retirement provisions from retirement after hubby is gone. Sigh I'm glad you have a Doc listening to you. Be sure you are in a position to plug into medicaid. Read and talk to everyone on that subject. Also, please be your own best friend. Try to remember things that made you happy and feel alive. Do those things as often as possible. Prayers for you

I too care for my spouse. At age 54 he was diagnosed with Early Age Onset Alzheimers Disease. He is now 59.5 years old. That first year wasn't bad because he could still talk with me and help me out some, since then that has all disappeared. Our youngest daughter came home and is helping me to provide 24/7 care. Financially---I will have nothing left! He let the Long Term insurance coverage for both of us go and didn't tell me. I have Type 1 Diabetes and require careful monitoring also (for 35 years successful so far) also. There is NO help available where I am. Every facility says they take Medicare only or "he is too young". I think so too...but still must live the reality of this dis-ease. Am exhausted as he is up and down all night. Has started to be aggressive and luckily now have an MD who has paid attention that yes, the wife has multiple bruises from this usually very tender man. Hope the new meds work to settle him down. Despair is always here in the background. Does anyone else feel this way? Is like the rest of the world just ignores that caregivers exist and truly do need some light from every day living folks!

I definitely agree with the previous posts. If I stay calm when my husband has delusions rather than arguing with him, things go much better. It's still difficult, of course but better than having him get more upset. I guess we learn as we go along and do learn much from this wonderful group.

Luci, loved the screaming into the sunset, my mind set exactly, to trick this demon called Alzheimers you have to make sure, no matter how much you want to yell, that everything you say is comforting, happy, loving and always with a smile. I have heard my husband tell our dog, we don't want to do anything to make Mom mad, that's when I really knew he was trying to keep things calm the best way he knew how.

I, too, have noticed that my spouse with AD mirrors my moods. It is difficult sometimes to project sweetness and light when you really want to run screaming into the sunset, but the difference it makes in daily life is well worth the effort.

SWOMBO you are absolutely true. If I want my husband happy and cheerful I put on the big smile and watch my tone of voice.

Stafford: Very true. My precious grandson told me not to worry about my daughter, his aunt. He said he will move in and take care of her when we're gone and will make sure she gets to live here in the country as long as she lives. Isn't that precious? sniff.

SWOMBO Hey, that's an interesting idea. I'm going to try it and see if it works here for me as well. Thanks for sharing!