Wife, Mom, Healthcare Professional, & Caregiver
Age: Early 60s
Care Role: Primary caregiver. Lives with Loved One.
Diagnosis: Vascular Dementia
Progression: Living at home. Diagnosed 3 years ago.
I was the one who noticed. He kept denying any problems himself. But I noticed things. We were driving down the road and said “we can’t get on the highway on this road.” I said “yes, we can. We have a million times.” He had forgotten that there was access to the highway on a road we use all the time. He was having trouble grilling. He’d say “there’s something wrong with the grill.” You know, there wasn't anything wrong with the grill. And he was leaving the stove on. But, he’s good with people and very verbal. The doctor told me that’s how he could cover.
Getting a Diagnosis
After a year, I got him to go to the doctor because I told him you know there are medications that can help. But I think what got him to go was that he scared himself. He was having trouble covering it up. He wanted help. He knew but he didn't want that diagnosis. But when it was interfering with his everyday life, he was willing to do something.
When we went to the doctor, they asked how long he’d been having problems and I said “one year” and he said “two years.” I think he had been covering it up. When we went for cognitive testing, they told me he told them he’d been concealing it because he was afraid that I would leave him.
He has vascular dementia and other dementia but I get different answers. His latest neurologist said “we really don’t know.” But they showed me a picture of his brain and half of it is missing.
It took us six months to get a diagnosis. The neurologists, cognitive testing, it all took months. I think we may also have a shortage of neurologists here.
Initially, we told no one. I shared it with my grown children, we both had previous marriages. I needed support. He didn't want anyone in his family to know. Now, everyone knows. The neighbors, the police. I have no choice. Anywhere we went he would say inappropriate things things. So when we went out to eat, I’d have to tell them. I’d use these cards that said he wasn't well. I had to tell people or we would have been ostracized in the neighborhood. My neighbors said “that makes sense, he wasn't like that before.” Same reaction from the woman who cut his hair. She was wondering what is going on.
At some point we were with my granddaughter in a shop. He didn't like the way the price tags that were on the clothes. He just ripped into this 16 year old cashier. I thought she was going to cry. I asked him to go do something for me in the car and he left to take care of that. I turned to the girl and I said “I’m so sorry. He has dementia. He is not well.”
Legal and Financial Planning
Before he was sick, we had an estate plan. We had an irrevocable trust. Power of Attorney could be triggered if two doctors declared him incompetent. So two doctors said he couldn't take care of himself . We added a thing or two onto the documents, like Do Not Resuscitate. When he was better, he told me he didn't want to ever go to a nursing home and if he ever was in a place to go, we should stop medications and bring in hospice. I agreed but now I am not sure I could follow through.
I was working and the cable to our garage broke. I called up the company to replace the cable. I come back and he had bought a new unit for $1,000 and paid them. It didn't need to be replaced. So from then on anybody who did work on our house. I told them that he has dementia he cannot ‘okay’ anything. They had to call me at work and every worker respected that. I went to the bank and told them that he had dementia, and they put an alert on the account. He kept losing the credit card and wallet. The wallet had all his info, even his social security. A Good Samaritan returned it but I was nervous about identity theft.
I took the checkbooks. He was upset because he grew up poor and he felt poor. I gave him cash to carry. Now he doesn't even usually carry the cash because he won't go anywhere by himself. He’d answer the phone and respond to telemarketers, I wouldn't find out about it until I saw the charge on my statement.
Filling his time is a real problem. He will play a game on his phone. I don't know if he can play anymore or if he just looks at it. He watches TV. Old programs. Andy Griffith. Before COVID, I used to take him to exercise. I've tried to do activities. I’m not good at it. I don't know if it's because of our relationship that he gets angry and frustrated or maybe that I am not good at that. I did his nails this morning. I’m good at physical care. I am not good at mental care. I tried to get him to do crosswords. I'd sit down and say let's do them together. I tried watercolor. When the grandkids would come over he and I would be a team. We would play games. We’d play Sorry and that would help. He’d feel closer to the grandkids.
COVID, being away from the kids, and his progression has been a real problem He told the doctor he feels useless. He doesn't feel like part of the family. He can’t keep up with the conversation. The kids get on his nerves. I tried to take him to the zoo, we weren't on Red Alert and you could social distance and it was outside. But he said inappropriate things to children. I was trying to sign to the parents that he’s not well.
He tends to fall asleep when he is watching TV during the afternoon. He just becomes more demanding of things.
One neurologist. told my husband he couldn't drive. He refused to follow that advice. I said, let's get a second opinion. He got re-evaluated at cognitive testing and they said he can’t drive and they were going to report him. He still wanted to drive. I told him “if it's just you, that's fine. But if you get in an accident, we are no longer covered. So, that’s my house at risk. It my financial well being.” I don't know if he understood how that hurt me but he understood that I wouldn't back him up. That gave him a way out. To save face. He threatened to kill the neurologist. So we haven't been able to go back.
I took the keys and I’d carry them with me. He acted up. He put a bullet in the pantry. Later, in a threatening voice, he said I wasn't going to be happy with him. I took all his guns away before. But I didn't know if he had another gun. He clearly had bullets. I felt so unsafe. I gave him his keys back with the stipulation that he only drove to certain places during certain times of the day. He would get the gas but he’d lose his wallet or credit card. I watched the speedometer and I saw that when he went to the doctor a mile away he had travelled over 90 miles. He was getting lost. There were scratches on the car.
I regret that I didn't find a way to stop his driving. He could have killed someone. I could have disabled the card or said it was stolen. I was overwhelmed. I would have handled it better if I had the support. When you give a patient a bomb like that -- you cant drive -- and the caregiver the task of getting it done. The caregiver needs to carry it out. No one followed up. No one asked me how its going. I would have said “well, I feel like he’s gonna kill me. So no, it's not going well.” Should I have him taken to a care home at that point? I could have. I was in over my head but I didn't want to ship my husband away.
I called the police. I wanted them to follow him one day. He was not signaling. He wasn't driving properly. I thought the police would pull him over. But they wouldn't do that.
He got lost for the first time the other day. He was walking the dogs and I noticed he had been gone awhile so I called him up. He said “I'm ok but I don't know where I am.”
He’s having trouble with his phone. He can’t text anymore and he answer the phone maybe 50% of the time. I’d like to try a different interface.
I wanted to get a medical alert with our phone number and address. And I’d like to get him one of those kids smart watches that can be used to make calls. You can use them to track or listen in on their conversation, if need be.
Personal Care and Day-to-Day Stuff
I was watching TV and he said you left the stove on. And I thought, “that's weird.” So he turned it off for me. 10 minutes later I smelled gas. He had turned all the burners on, I had not turned it on. He got it confused on which is the off. He could not tell the difference between on and off. He’ll put on his socks, and I'll say you've got the heel on top of your foot. And he'll say no, it's right.
My husband will not accept that he needs a caregiver. I work. He refuses to stay in the house or not use our gas stove when I’m gone. When I showed him that he left it on and gas was leaking, he said I’m wrong. I just picked him up from being lost while walking the dogs. He gets very angry at me for bringing up the idea of a caregiver. So I told him that the daycares are in need of volunteers -- the virus has led to a shortage of helpers. I asked him nonchalantly if that's something he’d be interested in. He said “yeah, I can do that.” He loves being helpful and he used to work in a doctors office. So the daycare will put on a charade and let him help out. They will pair him with someone low functioning so he can “take care” of him. Let him hand things out to other people.
Neurologists have not given us any help whatsoever. We're on our third neurologist. My support group says they are not interested in dementia patients in this area. I have durable power of attorney now. Before that the doctors really wouldn't talk to me. My husband hit me. He was hitting me bad enough to leave bruises. So I left a message on their machine and said “his visit is coming up and I want you to be aware that he’s been hitting me.” When we saw the doctor they gave him medication to moderate his mood. But they never asked me about his attacks.
I feel so guilty going behind my husband’s back to talk to the doctors. They make the caregiver feel unwanted -- a pain that they even have to deal with. My support group is having the same experience. We have to fight to even be listened to. It's so frustrating. Our visits are 15 minutes. It's really just a medication visit. I have a psychiatrist for him. He is much more concerned and will talk to me without my husband. The psychiatrist has been very helpful.
There’s a stigma here. We are less than patients. The neurologists seem to think “just put them in a nursing home” and medicine is only to keep them out of a nursing home as long as possible.
I’ve learned not to be logical. We always solved our problems in logical ways before. This makes me feel bad, but that I'm going to have to be the decision maker. And I am going to have to present those decisions to him sometimes as a gentle lie. The gentle lies can keep him calm.
The other thing I've had to learn is to not judge what's important to him. He has to have a muffin for breakfast. That's important to him. I can substitute toast with jelly or eggs. He has to have a muffin. So I get it for him even though it's not important to me. We used to be on the same page but we aren't anymore. I had to learn that.
We planned to retire in Florida. We bought a condo there. Now I don't know what to do. He is going to have to go into a nursing home, in which case we should stay in Oklahoma so he can be closer to his family. I’d visit him all the time in Florida, but his family wouldn't be there. But I would be happier in Florida. We had planned on Florida.
Anxiety, Mood, Agitation and Aggression
During COVID, we watched the grandkids for 2.5 weeks and my husband didn't do well. The noise. The activity. How loud they were. He was acting abusive to the children. He told my grandson “I am going to break your leg” and he took one grandson and took his arm and twisted it. That was sudden. That was sad.
Our dog sleeps with us. She’s about 12 pounds. One night our dog didn't want to sleep with us and he wanted her to. He held on to her real tight. She was trying to get away. He started pounding her. I was scared to death. I thought he would kill her. So that’s another problem with the grandchildren. I can not leave them alone with him. It's scary. I told my grandson “grandpa’s head is not well. He’s sick. No one should ever talk to you like that. If they do, you have to tell another adult. But if you need a way to get out of the situation, just say “yes sir” and then run and tell another adult.``
The way it first shows might be emotional changes. Not always in memory. That can be surprising. He was just so abusive. I felt so alone. I didn't feel like I could tell anyone he was acting this way. A counselor helped me learn not to take it personally.