Daughter, Sister, Wife, Traveler, Artist, & Caregiver
Age: Early 60s
Care Role: Caring with her sisters and dad; lives locally.
Age: Late 80s
Diagnosis: Dementia, not specified
Progression: Lives at home with her husband. Diagnoses less than a year ago.
The first real sign was at family dinners. At the holiday, we noticed that she was no longer able to follow recipes. She would have me help her with a recipe. I put it down to aging. She had diverticulitis. She was in a hospital. When she came back from the hospital, we noticed she couldn't remember things. This past year we started saying she needs somebody to be with her. She has three daughters. We are pretty close. We started comparing notes and seeing a trend.
You might be disappointed to find out that we really haven't resolved much with mom. There's more questions than answers. We’ve known she has dementia for two or three years now. She started going to a geriatrician in September. That’s the first primary caregiver that actually understood her needs. Prior to that, she was seeing a doctor whose specialty turns out to be pediatrics. So when we found that out -- and had to switch doctors -- it was a whole other battle.
One of my sisters goes to the doctor with mom. She says the doctors aren't giving a diagnosis but they did give her a prescription. That prescription says it's for dementia. . I don't quite understand that.
My sisters and I would look stuff up online. Then my sister went with her to the doctor. My dad is hard of hearing. I believe my sister does a good job writing things down
Legal and Financial Planning
Our biggest concern is, we don't trust my dad to handle their finances. We had mentioned to our dad that maybe they should downsize. If he sold the house, he’d have enough money to cover her care. But my dad wants to take that money and invest it in the stock market. So we are afraid there won't be any money there for her care.
That's the big fight. We don't want it to tear the family apart. Our big concern is that when it comes time for mom to go to a nursing home or memory unit, there are going to be lawsuits to get him declared incompetent.
Two of my sisters reached out to lawyers. Both times they walked away without doing anything. Without a formal diagnosis, I don't even know what my mother is eligible for. I was told that mom would get a social worker, if she had a diagnosis of dementia. It might be helpful for answering whether we should let Dad do what he wants or we should try to wrest control of the property to protect mom. Since my Dad has lost his hearing, it's hard to have a conversation. So, we tend to email him. But my pastor said it's best to have these difficult conversations in person.
We're all invested. We're all convinced that we know what's best.
She went through a phase of saying, “I'm not crazy I don't need a babysitter I don't need you guys here all the time.” She picked up that we would come over to visit and then dad would leave and go run errands. We try to always have a family member with her.
She will look at the headlines of a newspaper and read me the headline one headline she'll just read it over and over and over. She won’t read the articles anymore.
She never had hobbies or activities. She’s not interested in coloring or crossword puzzles. She does like to go outside and do yard work. We feel like she's been better in the summers. In this winter, the only thing she can do is sit and talk to someone. My aunt would bring over like Chinese checkers or puzzles. My mom wouldn't do that.
Her language skills are good. But recently, when she's tired she has trouble finding words. She can still get up and dress and take a shower.
Nobody really wanted to tell her she couldn't drive. We don't want you to drive anymore or you can't drive. We tried to hide her keys. There were screaming fits where she wanted her keys back. My dad would just throw up his hands and give her the keys back. Fortunately, she couldn't remember how to start the car. Now, she doesn't seem to remember that she doesn't drive. She will tell me she drove to the store earlier today.
When she doesn't want to go somewhere, we have difficulty getting her in the care. But if she's ok going somewhere she's ok with my dad driving. She's of the generation when my dad did all the driving. She will get mad and want to drive somewhere on her own.
We’ve been talking about out of home care for about a year. Two sisters and think it would be easier sooner, rather than later. My dad and one sister want her home. In the middle of the day she is pretty good. The geriatrician says “keep her home as long as she can.” So that settled it for us for now.
I get the feeling that mom is one of the lucky ones. She's got three daughters. We all live close by. We are so far not fighting. We are cooperating.
I am really glad that we are able to do this with mom. I think of those poor little ladies who live 1000 or 1500 miles away from their kids. We are all in our 60s now so we've all come back. Well, either retired or come back home. don't know what happens if, when and when you get to another stage.
Agitation and Mood
She has problems with memory, confusion, and agitation. We’ve done different things to manage agitation. My dad has never been a nurturer or a caregiver. He gets rattled and doesn't know how to handle it. So he frequently calls one of us and says “talk to your mom, she’s upset.” We’ve noticed that my dad and one sister tend to get frustrated and argue with her, which only makes things worse. Two of us are better at deflection and calming her down. Sometimes we can calm her down on the phone, sometimes in person. We’ve had four instances when she’s hyperventilating. She gets so upset. If she’s upset and scared you can talk her down but if her breathing is out of control and she’s agitated and angry, you can’t talk her down.
There are two distinct types of agitation. When she gets mad, it's done. She has more trouble at the beginning and end of the day. Usually from noon to 4pm, she is better. That's where she needs more company. I'm the best one at just sitting with her and keeping her company and talking to her.
Recently, she has started pulling her hair out a strand at a time while we talk. She knows she is doing it and comments on it. She takes anti-anxiety medication multiple times a day so I don’t think we can increase those. I’ve thought about getting her some type of fidget toy.