My husband of 54 years and I grew up together. We have two children that are both living out of town along with six grand-
children. We had saved and planned for retirement like most couples but the year my husband turned 66 he was diagnosed with dementia. He had been having memory problems and personality changes. There was anger where he had always been so easy going. I had also retired and stayed home becoming his caretaker. At first, it wasn’t too confining but slowly began to get worse. He started forgetting how to get to where he needed to go. He had problems pumping gas and using a credit card. He couldn’t change my flat tire. He was having problems with the simplest issues. He was still mowing the yard and doing a good job and he needed to stay busy or he would get irritated. He would mow sometimes even if it didn’t need it. As time passed he became more and more dependent on me. I read all I could about the disease knowing that I needed to be patient and understanding because it wasn’t him who was yelling at me. He would just change. I didn’t realize I was probably causing some of his anger. I had to learn how to say the words differently in a different way. Sometimes I didn’t make it. I truly need a break; I realize that now. It’s been he and I 24/7 now for six years and I don’t know if he’ll be ok while I’m away. He tells me he doesn’t think he can make it without me, he loves me over and over all day. Our (kids) are really too busy to take him so I can have a few days. I don’t feel they think it's that important or they understand the hardship a caregiver sees. Is there any suggestions for me short of being admitted to a “Resort for burned-out caregivers”. My husband would never stand for a stranger to come into our home to stay with him. He doesn’t talk about his dementia at all unless I bring it up. He doesn’t have any old friends he knows anymore that would stay occasionally. It’s strange how your friends go away when you get dementia but I do know they don’t understand how he’s going to react toward them. I am at a loss what to do at this stage of the disease. I plan on taking care of him for as long as I am physically/mentally able. He would do that for me.
While making small-step change, you may take a break and meet/talk with others to plan a long-term arrangement.
I would look into options for short term respite with the idea that this may turn into a long term placement. And maybe that’s the safest choice for both of your well-being.
The situation will only progress, please explore placement options and if possible, get a consult with an elder law attorney so you play your cards right financially.
Sending support. 😘
Have a frank conversation with family . Consider, what would happen to him if you get I'll ? Making hard decisions now is in both of your interests and safety and we'll being.
If they come out and say they won't do caregiving, then your options will revolve around what you can afford: In home care or a respite placement for a few days. If there is money, hire some people to come in and help you around the house prior to actually being gone for several days. He can be introduced to the new person and have some time to be familiar with them.
You really should have one of them (at least) know how Dad works on a day to day basis - no matter what stage his dementia. If they are familiar, and at ease, with him they will be able to handle your hospitalization better.
You deserve time away from the stress you’re living under. Tell them the time has come.
You make it sound easy to enlist help. If you get volunteer help, they will want to do it at their convenience and your spouse (if they are like mine) won't accept just anyone to care for them. People (including your children) have their own problems to handle, and their families aren't as concerned with a demented in-law as you expect them to be. Children sometimes don't really feel the obligation you wish they did, especially when they get old themselves!
you cannot do this alone. Build a team with whatever professional care you can get and also family, friends, neighbor, church members….accepting help can be hard but there are people who can help. We all feel good when we help others so let others get that good feeling.
And keep some time for yourself and maintain friendships.
Strangers, caregivers will be needed sooner or later.
Your husband is in no position to dictate that, you are in control.
My husband has been in an Adult family home almost 2 years and the caregivers there are his family. His dog and I remain loyal and visit even though he doesn't know us.
Here's the latest revelation I had.
In planning 'tips' for his family of caregivers, I asked the manager how many to plan for....well, it takes 9 people to give him the 24/7 care(yes, there are 4 others in the home who also are cared for)...so who the heck did I think I was to be able to provide the daily care that these NINE people provide??? It makes all the difference in the world that the staff goes home at the end of shifts...my husband deserves care from someone who hasn't lost patience.
(The last two months he was at home, I was screaming at him more than anything else....he did not deserve that and I could not stop)
Blessings to all you, whether you are 24/7 or have extra hands(and hearts) in caring for your LO. Please take care of yourselves first so you CAN make the decisions ahead.
He talks nightly in his sleep. Our daughter heard him last night telling someone how to shoot specific types of guns. Scared her to death. This has me concerned since he refuses to tell anyone where the keys to the gun safes are. I've got to find out how I can get him to turn over the keys so I can at least put an additional trigger lock on his guns to keep us all safe. His neurologist just says "he's acting out his dreams", well what's going to happen when he really does act out his dreams?
I've reached the point that he's going to be placed in adult daycare a few days weekly after New Year. He's a 20-year veteran so on one of the days he's in daycare I'll go to the VA and see what services they will provide. Our daughter does live with us and she does take him out at times whether it's shopping - really gotta watch what goes in the cart, it's like having a kid with you.
I've found my temper runs short at times more often than not many days. I have my own health problems and it's difficult on some days to care for him without losing my temper.
I take him to a well-known Memory Care Facility for Alzheimer's in Las Vegas. I've lately wondered what happened to their social workers. Now I'm wondering why his provider hasn't sent me their way. The adult daycare I came up with. The VA I read on this forum. That's just 2 ways I'm trying to get some time for myself, whether it's time to go out, stay home and sew or go to a sewing class, I know now he's going to be cared for, not drive our daughter crazy either. We both need our time away from the stress. You do too.
He was hospitalized a few months ago. At that time I also noticed his memory going downhill. It's continuing to fail faster than I realized it could. Fortunately, we had a Trust in place with all of the proper full POA when the time came. No matter what I asked his doctors wouldn't talk to me. I pulled out the POA and presented it to the VA facility he was in. That also placed it in his outpatient records also. Now when I take him to his cardiologist there he'll talk more readily to me and let me make some decisions on his behalf. You don't want to have to go to court or have his doctors certify him incompetent. I know I didn't. One problem was avoided. Avoid the problem for yourself and speak with an attorney who is trained in elder law about how you can do this. Tell your children what you're doing, and tell them that caring for their father is too much for one person 24/7. As soon as you tell them about the full POA they'll probably come around or start asking what is really going on with dad.
You can only give so much and it will effect your health. Then what is in place to care for him when you are in a hospital?
He is dependent on you and so it will be hard to shift care to others sharing the load. Research available day cares or in home care and you will have to say " i have a gynecologists' appt ( no you can't come) that I have to go to so this person is here to watch the house..bye"
Are there any men's groups or hobby groups he would go to? Would a friend take him to a movie every few weeks?