New to board just became only child caregiver

Klako

My dad is moderate approaching severe Dementia/Alzheimer’s. My sister, who was my only sibling, just passed away suddenly at the end of August. She lived with him her whole life so while I helped with him she was the primary caregiver. 

My dad I believe also has the condition Anosognosia after reading some posts on this forum. When you mention he has Dementia he has no idea what you are talking about, he just thinks he is forgetful.

He has not driven for over a year (was always getting lost) but talks about getting his car (two flat tires and a dead battery in the driveway) fixed so he can drive or getting possession of my sisters to be able to drive. We have my sisters car at our house and when he comes we hide it around the corner so it is out of sight out of mind but every couple weeks he asks where it is and wants it brought home be cause he would like to have it to drive. He even some days will talk about how he drove to the store like yesterday. First problem….have explained numerous times he cannot drive. He doesn’t understand why and forgets and then we have to start all over again. Any suggestions?

I have been going every day to his house since my sister went in the hospital mid August and spending 5-8 hours a day there trying to bridge the emptiness of my sister not being there. My mom passed away 7 years ago so for the first time in his life he is alone in the house. I have kind of learned that he doesn’t really remember from day to day I am there. He will tell me about how he cleaned or found something that we did together with no recollection of me being there. He has incontinence issues also both ways and that makes it difficult because he doesn’t realize that either.

He is ok alone when I am not there for now. I cook for him. He is able to use microwave and make toast or pour a bowl of cereal. I am sure he is lonely which breaks my heart but not sure what to do about that. He cannot move in with us, he is not familiar with the house and we have a split level, too many stairs and he is not steady enough plus I just don’t think I could do it, which makes me feel very guilty.

I need to introduce some home care to get a break. I am also trying to work a full time job. My seven days a week of getting up and running from 8am-9pm is getting tiring. And I have not seen my adult children in over a month.

How do you bring up subject of home health or even assisted living when that time comes with someone who does not realize he has an issue? 

Any suggestions for navigating all of this would be helpful. I also have guilt over being the person who will tell him he cannot drive as my sister never did, she would just put him off. And then also the home health care and eventual AL. 

Thank you for any suggestions and even all of your posts. I have found a wealth of information and comfort in knowing I am not alone and some of the suggestions shared on this forum.

MN Chickadee

You probably need to use therapeutic fibs and work behind the scenes. Most of us do once our PWD gets to a certain point in disease progression. Explaining these things to someone who can't remember the conversation or understand the logic behind it will not help. Maybe the broken car is waiting on a part, the supply chain sure is slow these days. Rinse and repeat. Maybe your sister's car is at the shop waiting on a part but you will bring it to him when it's done (it will never be done.) To move my mother to MC we set everything up in the room ahead of time, and didn't tell her where we were going, had lunch there and did an activity, and then said the doctor wanted her to stay a while. By then she had already forgotten lunch. Her loop was so short. It was very difficult but what needed to happen. We slipped out and let the staff take over. They, and us, repeated the doctor story. Perhaps the PWD is there to get stronger or monitor blood pressure or work on balance. Some families use a problem at the house, so you can stay here until the furnace or broken pipes are repaired. Calling it temporary is usually necessary. Eventually they forget it's temporary and their old way of life. For bringing in help try to come up with a plausible fib. Maybe it's a cleaning lady, you gifted him house cleaning for a year. The person can start with cleaning and slowly add things as he warms up to them. Or it's a volunteer from church, or a young person who needs community service hours for scouts, a nursing students logging hours, your friend who is in hard times and you are helping her out by paying her to do some chores. Whatever might push the right buttons. Start slow, maybe you be there for the first couple sessions. Or be there at the beginning and excuse yourself to a doctors appointment and leave them alone a bit. It's all about managing the early days, after the PWD gets used to something it usually needs no explanation. Early days of in home care and especially a move to a facility can be very difficult but it does get better. 

Are you sure he is ok alone? I would be surprised if he is properly managing his incontinence. And the symptoms you describe would suggest he isn't actually safe in the kitchen. PWD have been known to use metal in the microwave or toaster and other bad judgement. It only takes one slip up for a disaster. Would he know how to call 911 for a kitchen fire?  I would stay with him 24 hours a day for a couple days and assess what is really going on behind the scenes. 

Are there any adult day care programs in your area? They can be a great resource when you need to buy some time. It provides supervision and social stimulation for the PWD, respite for the family. Many will handle issues like incontinence. Given that you think he is lonely it might be a great way for him to get some socialization in a context he can handle and keep up with. Your local chapter of the Alz Assoc and Agency on Aging likely have lists of resources in your area. 

M1

Welcome to the forum Kisko, though sorry that you are facing this.

I would agree with Chickadee that I would worry a lot about his being alone in the house.  Sometimes you can introduce home health care as "a friend who needs a job," but it certainly can be difficult,  and unless you can cover 24/7 care, it doesn't really address the safety issue.  You don't want to wait until there's a catastrophe to make a move.  Do you have power of attorney?  I hope so, you'll need it.  And I would start looking at assisted living or memory care facilities right away, that sounds like your best option.   Given the incontinence issues, he probably needs memory care, to be frank.  Again, you'll need power of attorney, and you need to address how you'll finance it:  if you haven't done these things, a certified elder law attorney can help both with the documents and assessing his finances (look by location at nelf.org)

Good luck, this forum can be a lot of help; it certainly has been for me.

mommyandme (m&m)

Welcome! and sorry… 

We installed cameras when we were needing to change up the caregiving schedules to buy us some time.  Invaluable investment that wasn’t expensive.  I agree with the adult daycare idea.  Sounds to me he’s not actually safe home alone.  Sorry. 

jfkoc

After hello the word that comes to mind is stop.

Stop  thinking that your father is on the same page as he used to be and that you are still on. He is not coming back to that page not matter what you try. Oh, there may be moments but that is about all.

Stop explaining to him that he has dementia. If he drove to the store yesterday accept that...which store...did they have what he went for etc.

Why can't he drive? Blame it on meds being taken or that it is required at his age to take the drovers tedt and the forms have not come.

If he talks about doing something together expand on it. Practive your make believe.

Stop thinking that you need to talke to him about the "need" to find placement, additional care or a facility. These decisions are yours to make and then followed through on with a carefully planned approach.

Start would be the next word.

You need to see if there is still time to get a DPOA in place. You need to get financial and other legal matters taken care of. 

Then you need to start on dementia education 101. A good place to start is with any book by Naomi Feil.

Of course stay with us here where we relly understand and care. We will give you both support and information!

Judith

Klako

Thank you everyone for your advice. We do have cameras installed, we did that right away.

I also have DPOA and HCPOA and his legal stuff in order.

As all of you know it is just a hard transition and thank you for the encouragement on changing my mind set. 

I am so grateful to have found this group and for all of your thoughtful responses.