Follow
Share

He is only 68, but I also have a disabled son. Our son is 13 and has cerebral palsy and autism and needs much care and assistance with all daily living skills also. It tears me apart, I can't imagine my husband not here with us and thought he would be okay for a long time. He is only 68 and his symptoms started about 6 or 7 years ago. He is on Mememtine and the Exelon patch but it still is not enough to help his memory. He is also taking Neurontin for neuropathy in his feet. In the last few months, he has been progressing with the disease and has been confused about me being his wife and that we adopted our son 11 years ago, and that he lives with us. He finds the place we live totally unfamiliar at times. He also began wandering a few months ago and has begun being paranoid that someone is trying to fight with him. It is so confusing to know if it is the meds or the disease. He is still very aware and does not want to talk about having anything wrong with him and at this point would not even discuss what we should do when he gets worse. He was in denial for several years and it was very difficult to even get him to go to a Neurologist. He would not do an MRI. His Mother had earlier onset of Alzheimer's and he had to watch what happened to her and I think it was to painful for him to think about it happening to him and our family. Thank you for any advice.

This question has been closed for answers. Ask a New Question.
Do remember that even if your spouse is a veteran, if you have over $90K in assets you will have to pay a higher fee. It is still less than most care facilities and the one my spouse is in is wonderful. He gets excellent care and although he no longer knows anyone in the family he seems content which is a relief for me.
Helpful Answer (0)
Report

Thank you all so much for your caring, supportive answers. Unfortunately, my husband is not a Veteran. Good advice that is just tough to accept, but so helpful to receive from people in similar situations. He hasn't been violent, but the restlessness and fear of wandering and him getting upset and worried, are so concerning. He is very aware a lot of the time and loving to both me and our son, but I know it is time to at least look at the options so I will be prepared.
Helpful Answer (2)
Report

Thank you all for your caring supportive responses. I am new to this group and can see what a big help everyone can be that has been through similar circumstances. So very tough. My husband is not a veteran. I agree, it is time to get more help so I can free up some time to look into options. My husband is still very aware at this point that he would get very upset if I took him to a Day Center at this point. He feels so isolated without friends though, and keeps wanting to be around people. 5 years ago when he closed his business in NY., where had been for 40 years, he was originally from Canada, he wanted to move to the Pittsburgh area so that I could be by my family, but the change did not help him and made things worse. His two adult children are still in NY, and his family is all in Canada, so he has no friends here because his Dementia progressed fairly rapidly making him unable to drive or associate with anyone unless I was with him. Feel so badly, but it seems at this point, it would not be a good move to try and relocate back to NY. I would lose my family support and cause so much confusion for him. His children are 36 and 34 and working full time and so busy working at their lives. 
Helpful Answer (1)
Report

When you fall Ill yourself, you will be good to no one to provide care. No one person can be super human.
Helpful Answer (2)
Report

My husband had a traumatic brain injury at 60. Within a year I knew he had dementia. I have been disabled almost my whole life and, though I had hoped to care for him at home until the end, I knew that might not be possible. I made the following rule and repeated it regularly to him. If I could no longer physically care for him, or if he became a danger to himself or me, he would have to be moved to a memory care facility. I made the rule because I knew when we got to that point he wouldn’t be able to understand that decision. Last March he became very ill with constipation (Crohn’s) and could not be left alone for a second, because he would reach behind him trying to clear it out. When he’d try to sleep, he’d lay spread eagle on our bed. I’d have to physically move him so I had room. That action broke a titanium rod in my upper arm. Literally, it was my breaking point. He is now 3 states away in a facility I can afford, near other family who visits him. The staff loves him so I’m not worried about his care. I will be visiting about every three months. No one in the family there visits at the same intervals or times, so the facility has no idea when visitors are coming. When I was admitting him, he had a moment of clarity saying, “I know this is where you need me to be.” He doesn’t know who I am and spends all his time talking about me, even when I’m right there.

Once I made the decision to place him, the overwhelming stress started to release because I knew the 24/7/365+ caregiving was coming to an end. I hired in-home care to help with bathing and respite for the last two months before I moved him. Leecaregiver1 has it exactly correct. I just have to supply the love, which is much easier when you aren’t dealing with the frustration, stress, exhaustion, anger, resentment and all the other totally normal emotions you go through as a caregiver.

Tour facilities now so you know what is available and you can get on any waiting lists if need be. Don’t make an appointment! Just show up. Bring a friend or family, or find someone else in the same situation who may need a similar facility one day. My whole dementia caregivers support group went so we had many eyes and ears. We also had a wide variety of questions, mine being about how the staff handles sex. Answers varied greatly between facilities.

Finally, if he qualifies, check with the VA. Just be aware that if his service time was not during an actual conflict (whether he fought or not), there will be less opportunities available. The members of my support group are very well versed on this subject. Good luck!
Helpful Answer (2)
Report

Oh loveyouforever. You have so much on your plate to deal with as so many others do on this web site. You will know when it is time when he becomes a danger to himself or to you. Then you will just have to do it to protect him and you and your son. Life is so hard and I am amazed at all of what you and other do for there loved ones. One day at a time is all we can do and come here for someone to talk to. ((((HUGS))))
Helpful Answer (1)
Report

I put my wife into a memory care facility which was the hardest decision I ever had to make. As i was out interviewing different memory care facilities one director said to me; "The things you do in taking care of your wife-the feeding-the bathroom-the dressing-and all the other things we will now do. You just provided the Love" That was the line in the sand that helped me make the most difficult decision. I can do that and provide the Love. I visited her everyday and help feed her meals, except for short respite trips, until the day she died. My goal each visit was to have her smile and know she was loved. I would kiss her every time I came and even when she was unresponsive in her last hours when I kissed her on the forehead then the cheek she puckered up to be kissed on the mouth which I did a couple of hours before she passed. She knew I was there and she was "Loved".
Helpful Answer (11)
Report

It is time when you start asking yourself "how do you know when it is time?" It is very difficult to come to the reality that the care is exhausting you and you cannot manage alone any longer.
Helpful Answer (4)
Report

A few questions for you...
Is your Husband a Veteran? If so there are programs that can help you. Home Health Aid, Adult Day Care.
Some Memory Care facilities also have Day Care Programs. The nice thing about that is if he ultimately needs to move permanently he will be familiar with the surroundings and the staff.

I am sure if you had discussed this with your husband 10 years ago and played the "what if" game he probably would have told you that with the circumstances you are dealing with and the understanding of what is to come he would have agreed to placing him in a Memory Care facility as I am sure you would have agreed that if you developed memory problems you would have agreed to the same thing since your son would need more care as things progress.
As your son gets older, bigger, stronger it will take more to care for him. As your husband declines it will take more to care for him.
If he at any point gets violent the decision is easy, it is a safety issue for both you and your son. Placement would be the only option.
I was lucky, I kept my husband at home with the help of the VA and Hospice but I had said from the start if at any time he became violent or it no longer was safe for him or for me to care for him I would have no option but to place him. Thankfully He was as he always was a kind, gentle man that was easy to care for.
It is not a "failure" to make the decision to place him. You will still be a caregiver but you will be more of his wife. You will still be his advocate.
Helpful Answer (4)
Report

How challenging this all is for you. I also have a son with autism who needs considerable care and took care of my dad the last three years of his life. I got to the point that I could not deal with it all. It was much easier to place my dad in a nearby assisted living facility than find similar care for my son. I think it wouldn’t be a bad idea to start looking at placements in your community for your husband. It is probably the only solution to keep all of you safe and well cared for. Trying to stay strong in such hard times is not easy. My heart goes out to you.
Helpful Answer (3)
Report

Loveuforever, have the doctors given your husband anything for psychosis? Hallucinations, both visual and audible, were both huge signs when my Mom was originally hospitalized with early onset of dementia. She was 67 at that time. Thankfully the Dr's figured out the right "cocktail" for Mom and it helped tremendously with that aspect of the disease. While she didn't get to remain in her own home very long, she did transition well into her assisted living apartment. (Mom lived alone and my sibling and I are both in other states) I definitely support geewiz's suggestions; get all the help you can because being the sole caregiver will wear you out both physically and mentally. Prayers to you and your family.
Helpful Answer (3)
Report

Such a challenging combination of circumstances! The choices for your husband are to bring in home health aides or companions; try to do it all yourself (which seems Impossible) or to move him to a facility where he will get around the clock care. Both home care and facility care costs money. If you have financial resources, you might try to bring in help while the doctor considers medicine adjustments. IMHO you will eventually need to place your husband in a facility because of the needs of your son --- along with my belief that one person can only do so much.
I would urge you to find some caregiver support groups (try United Way; houses of worship; memory care facilities and the cerebral palsy and autism group sponsors.) You may learn of additional help and get ideas from others facing the same challenges.
Personally, I would avoid the topic of plans for the future, since his disease has progressed --- it seems unlikely that he can make choices or be part of the decision making. Try to spread a wide net of friends, neighbors, relatives that can help you in ANY way possible. Dropping off a meal, getting groceries for you, helping to provide companionship to your husband when you are busy --- anything. Never turn down an offer to help, always have an 'assignment' ready to hand out. Hope this helps.
Helpful Answer (10)
Report

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