Follow
Share

My husband has Lewy body dementia and was diagnosed one year ago after 6 years of cognitive impairment. My husband is 71 and I am 68 and feeling overwhelmed and depressed. We should be traveling, playing bridge, going out with friends in our retirement. It just sucks.

This question has been closed for answers. Ask a New Question.
Get a 30 minute free consultation with an elder law attorney. Maybe there is some way a Miller Trust or state spousal impoverishment laws that can help you out.
Helpful Answer (1)
Report

please purchase Aprils "chicken soup for the soul" dealing with alz and dementia. all proceeds go to alz foundation. my friend has an excerpt in itthat deals with early onset alz.
Helpful Answer (0)
Report

Vegas Lady, we do have some money, even after the loss of his income 4 years ago. I hope to keep enough of a nest egg for unexpected expenses and hopefully enough that I can be placed when the time comes. I wouldn't want to have anyone else have to care for me. I haven't sought professional help, but I know he doesn't qualify for Medicaid. Maybe things aren't impossible, they just just feel that way. Pardon my "woe is me" attitude.
Helpful Answer (0)
Report

If he can't afford to pay his way into care look into Medicaid. You aren't expected to pay for all the care that's needed. I don't understand why so many people think everything is impossible and that they have to do it all themselves. This isn't meant as a criticism, but so many people can get help if they accept the paths that are pointed out to them. Good Luck.
Helpful Answer (1)
Report

Price for placement is a factor. I've been told he could live for decades. Don't have the funds for that.
Helpful Answer (0)
Report

Try placement sooner rather than later when you can't stand them anymore. It can be too much. You count as much as they do. Give yourself credit for being worthy of a life too.
Helpful Answer (1)
Report

Jinx4740,I can't stand the sight of him because he's in my face all day long. He mumbles, cusses, shuffles, stinks, always in the way, threatens everyone, he's just very unlikeable. Have been playing w/meds for four years. Nothing seems to settle him down. The only alone time is when I'm sleeping. Have been feeling so overwhelmed lately, sometimes I just don't know how much longer I can do this. Photoarc, I'm sorry you're as miserable as I am.
Helpful Answer (0)
Report

sometimes I think about getting a job that would pay enough for nursing care. It is sounding better and better the longer we go through this crap
Helpful Answer (1)
Report

stafford...you could be writing for me.....I soooooo understand. Such a cruel disease.
Helpful Answer (0)
Report

I am still dealing with this....new problems and I am sure many more to come. He is now bolting, leaving and walking...he was brought back by security leaving the complex in his stocking feet. I thought I had the alarm on but didnt. The security gate is like a mile away from our house. I am cleaning up pee and poop, listening to babbling all day long. Trust me, he will live long before I am gone.
Helpful Answer (0)
Report

Captain, I wouldn't want you to rein in your free spirit, but have you ever tried being an "easier marker" on the rest of the world? I agree with you about barking dogs and liars. I know your mom could drive you crazy, but you managed to find the loveable part anyway.
Helpful Answer (1)
Report

im pretty ignorant at 55. men degenerate in the head at a much younger age than women usually. i dont really care, im hellish at beating on rocks but keeping a good relationship with customers is getting more difficult. firstly, shut that barking dog up or ill kill him and every other dog in a 3 mile radius. secondly, dont pull no bs on me cause our communications are all via email and print doesnt change. meh, im just raising a little hell before my sat dish gets completely ice covered. there are icecycles 8 feet long dropping from my eves. they are humbling if not something to entirely avoid. freaky looking im sayin.
Helpful Answer (1)
Report

My MIL passed away from dementia right around 65 following a major head injury sustained around age 60 when she fainted for the first time ever and fell straight backwards in a bookstore. Far too young with three young adult sons who learned how to navigate the system very early on to get her the care she needed until she passed. It was a very quick decline overall.
Helpful Answer (0)
Report

Stafford -
This is the place where you can share exactly why you can't stand the sight of him, and we will all understand. I can't promise no one will flip out and accuse you of stuff, but if that happens, the rest of us will jump to your defense.

It's hard when you love a spouse or partner, but through no fault of theirs, their behavior becomes "unloveable." Tell us all about it. We get it.
Helpful Answer (1)
Report

I also have a spouse who is 67 and was diagnosed with dementia at age 65. You're right - this is not what I envisioned our retirement years to look like. But God has a plan and He is walking right beside me helping me each day. I don't understand it, but am trusting in Him. My husband is getting an MRI next week to try to pin down what type of dementia he has. I know you feel isolated, but try to get as much support from others on sites such as this. I am going to check out the website suggested by one of the answers above for spouses of dementia patients.
Helpful Answer (0)
Report

My heart goes out to you Stafford. I am there with you. My husband was a triathlete, doing 3 Ironman competitions and the nicest guy in the world. Our lives have changed desperately.No end in sight. I am just trying to muddle through this too.
Helpful Answer (0)
Report

My husband is 62 & I'm 67. I've been dealing w/this for four years. I wish I could tell you about all the joy & satisfaction I've found being a caretaker, but that would be a lie. I am trapped, miserable & feel the only reason to live is so that no one else will have to deal with this nightmare. He was a great guy, athletic, caring, etc., but now it's almost hard to remember when he was normal opposed to what he is now. I hate that I can hardly stand the sight of him anymore.
Helpful Answer (1)
Report

Thank you Vegas Lady. My husband has Lewy Body Dementia and shows all of the symptoms of the disease. Support groups are hard because I took my husband to day care for the first time to go to the meeting and he did not like the daycare. I am thinking about in home care. That may work better for me. Right now, we are pretty much joined at the hip, I stay at home or he goes with me. No family support so I am on my own. I think it will be better if I get someone to come in a couple of times a week so I can get away occasionally. By the way, my husband's Seriquill generic was just switched to a new manufacturer called "Accord Health" and he hasn't been doing very well the last week. I am concerned because I looked this manufacturer, coming from China, with bad reviews. I don't know if it is just the progression of the disease or it is the medication. I will address that tomorrow after I talk to his doctor, or at our next doctor visit. It is so hard to see him depressed and frustrated because of his illness. A long road for sure.
Helpful Answer (1)
Report

My 62 year old husband has frontotemporal dementia, behavioral variation. He is a combination of apathetic and angry with a lot of yelling at me for whatever has ticked him off for the moment. We're only in the first year of having identifying the problem so we've got quite a while to go. I've been lurking on this website for a while and find it helpful. I recommend finding some support groups. I try to attend an ftd caregivers support monthly and a support group for caregivers of dementia (mostly Alzheimer relatives) which meets weekly. If you haven't already found out what type of dementia it is, do that ASAP because different types have different manifestations. Alzheimers is different from Lewy Body, from the dementia that may accompany Parkinson's, etc. Learn as much as you can. It's going to be a rough road to travel.
Helpful Answer (1)
Report

The new aniti-depressant is Wellbutrin. Not as tired and flat as the other one and feeling better over all.
Helpful Answer (2)
Report

I am on a new anti-depressant and doing much better; however, we did have my brother-in-law visit for a few days and I am getting ready for Christmas so had a little respite with my brother-in law. I went Christmas shopping, took a nap and a long shower without interruption. Merry Christmas to me. I know it will be hard again after the holidays but....one day at a time.
Helpful Answer (2)
Report

A great website for more support for those of us with spouses who have dementia is thealzheimerspouse, you should check it out.
Helpful Answer (0)
Report

Thank you for your support. No one knows what it is like more than you. I went on an antidepressant for 3 weeks and have been like a zombie...no lows, but no highs either. No energy for walks, cleaning etc so I stopped taking them yesterday and I am feeling better already (don't worry, I was only on 10 mg of Lexipro so quitting should not affect me. I know for a fact that if I walk 2 or 3 miles a day, I have so much more energy, am soooo much happier, and have a normal blood pressure, and sleep better, so that is my plan. My husband enjoys the walks so I think that is my answer. Also, I just got a Durable Power of Attorney which I didn't think we would be able to get, so that is a huge relief to me. I thought you got one when your loved one was incapacitated. WRONG......get it now, not later.
Helpful Answer (2)
Report

I get it. I didn't become a nurse, because I wasn't interested in nursing people, and yet here I am. Are you able to get any breaks? I try to have as much fun as I can fit in, because I know it won't get any easier in the future. If you do have some assets, spend some of them for your relief. Anything that is left in the end will just go to the NH.

I know how you feel, but to get some peace, you will need to accept that this is the way things have turned out. Some people have it easier, and some people have it harder. This is what happened to you. You didn't do anything to cause it. If you read the posts here, you will start to feel that your life isn't quite as horrible as it could be. I'm not saying don't complain. Come here and complain early and often. I am saying that life isn't fair, and there's no changing that. Accepting that can remove a little surplus suffering. There will be plenty of unavoidable suffering, so try to just go with it when you can.

I planned on being a healthy and active old lady, able to get around and enjoy things. I'll try to squeeze in as much as I can, even with this burden.
Helpful Answer (3)
Report

My husband was diagnosed with frontal temporal dementia five years ago. He is now 64 and I'm 55. Never thought I'd be going through this. It can be very isolating. I do understand how you feel.
Helpful Answer (2)
Report

So sorry for you and your sister as well. How hold is your sister?
Helpful Answer (0)
Report

I completely understand. My sister was diagnosed with dementia 3 yrs ago. She was a newlywed. They had all kinds of future plans. They barely got to know each other. I miss my sister.My 92 yr old mom is showing some signs of dementia and I feel I have a huge burden on my shoulders. I just retired and didn't think life would be like this...it gets you down. Hope you get some time for yourself without feeling guilty . we all need it. Good luck
Helpful Answer (2)
Report

Let me reword that. I am the one feeling overwhelmed and depressed.
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.