Spouse with cognitive problems and finances

@Julie Chitwood

The speech difficulty can be a stroke. Speech can sound like babbling as a baby.. or like a foreign language .. or the words won't come out … sometimes a word or two can be understood. May or may not include drooping of face. With my mama that happened more than once. Most of time a mini stroke. One time it was a UTI … another pneumonia. Another time it turned out to be a heart problem .. type 2 mobitz. With the mobitz for a while she did not know who we were … just knew her dog. She needed a pacemaker, but she would not have survived the surgery.. taking her off one med helped. Her heart rate would get down to 30 at times and by time you took it again in a minute it would be up to 60.

Before mama came to live with me and my husband I would get phone calls from her accusing me of stealing photos. After she moved in with us that never happened again. I think she was not taking her medications correctly. Her medicine bottles sat on a tray and my brother would just sit it in front of her to take. She usually ran out of meds before she should have. Mama did get mad at me for not leaving her walker within her reach. She had fallen when I was not in the house. Fortunately my husband was here to help me get her up. She did not like me to bathe her… but she would wash her face over and over and one arm over and over. She would wash parts of her body as I told her to, but I would have to tell her she had it done and time to move on. Getting her in the shower once a month was a fight too.

Mama had horrible hallucinations .. some scared to her. Sometimes it was something simple like she would see a piece of paper on the floor. I explained to her that this stuff is not real .. told her to remember how her sister was when she had a bad stroke. She said Alice (her sister) used curse words. Mama asked if she had gotten that bad yet. She had not. .. and never did. Mama said she did not know I could be so bossy . .. that I was always the quiet one 😁

Julie is your bedroom big enough you could put a single bed in there for you? I have to have a ton of pillows to get some decent sleep and my husband has a noisy cpap. Before cpap machine I would try to sleep with him, but I could not get comfortable and he tended to thrash about and he hit my ribs one night. I said enough and moved to the living room sofa. A few weeks ago we bought a daybed for me. It has the rail back and the pillows I need for support of my back and my arm & shoulder work wonderful with it. We bought a trundle bed for it to and when the grand-girls come they can sleep there and I can go back to the sofa while they are here. More street noises in living room. .. but I can keep an eye on the fridge they like to raid in the night.

Just have to remember the acting out is not them .. it is the disease. They are underneath the disease somewhere. They seem to know it and I think that is why they wish the suffering to be over with. .. Mama said more than once this is just existing .. not life and I want it over with. She would beg God to let her die.

My prayers ongoing for Bill, you and Robin.

ZeeGee

Room is not large enough for another bed - even a day bed.
The Seroquel has helped with the anger issues - a life safer.
Lately he has been commenting that he thinks he will go soon. He has a lot of health issues but all kept under control with medications. I give him his meds each morning and night as he gets them mixed up and/or forgotten. He takes a lot of them.
His sister had dementia in her early 60s - died quite a few years ago. She was way overweight. Had back problems and to qualify for disability had to be home bound - which wasn't good for her. Bill, along with his late Mom and sister, all preferred to stay home and not interact with people other than family. Bill won't even interact with family if he can help it.
In TN in 2013 I'm sure Bill had a TIA - by the time they got him to the hospital he was fine and the doctor claimed it was just vertigo. They didn't run any tests. Bill just claimed he was dizzy. The doctor never asked me what had happened. I would not have called 911 for just 'dizziness'. He couldn't speak - couldn't move - when he could finally speak a little his voice was terribly slurred and almost impossible to make out what he was staying. It is possible he suffered another TIA the other day, but symptoms gone. Understand with a TIA that can leave quickly. Rest of the afternoon it was as if nothing happened.
Each day seems to be a new adventure. Some okay and most not good.

@billchitwood
True.. sometimes with a TIA or mild stroke the symptoms disappear quickly and they don't show on MRI. Mama had CT scans because of a pain stimulator she had had metal in it. CT scans do not show as much.

The last stroke Mama had caused a brain bleed. Not a candidate for surgery for it at age 92. She could not speak .. just make noise. She could write on my hand and indicate yes and no. All they couod do was to put a feeding tube in and she would be no better than she was. She understood the doctor and after he left we went over what he said again and she indicated she understood . I told her I would do whatever she wished me to do. She said no to feeding tube. So we made arrangements for hospice for her in my home town so I and my brother could be with her. I could not take care of her at home even with hospice help.. they will not stay 24 hours a day. I had had hand surgery and could not take care of her needs. She could only have two visitors and no changing out with others. I gave my brother the choice if he wanted to take shifts and he said he would. Most days he stayed 3 hours .. me 8. Looking back I wish I had just said my husband would be the other care person. He was more of a son to Mama than my brother. Mama passed on 24 August 2020 a few days after going to hospice. My brother has not talked to me since the first week of that Sept. Which is fine with me. I have another brother out in Washington state. We are close .. with covid it was not a good idea for him to travel to GA.

I am a homebody… just prefer not to be around many people. I am 71 and do not think I will make it many more years with my health problems. I try to make the best of each day… do a little that brings me joy.

My daughter lost her husband to ALZ about 6 years ago. He was on hospice for some months. Died holding her hand.
Bill and I have a blended family. He has one son we rarely hear from. A Grandson who said if he wasn't in the will he wanted nothing to do with his Grandfather (you can imagine what our response to that was!). Bill's two other kids are so relieved that Robin has stepped in to help. They are in NV and I'm in constant contact with them. His son Scott thinks he isn't as bad as he is (showtime and wishful thinking). But we do have their support and said they would help if we need it. Bill can only last on the phone with them for a few minutes and then he is begging off.
Something like this involves the whole family in one way or another.

Last spring our family doctor set up Home Heath visits for Bill (which he managed to cut short quickly with 'showtime'). However when the one therapist was there twice Bill asperated on his joint pill (large) - having it go down the wrong tube. He had been having problems swallowing. Jim wanted him to have some tests run but Bill refused.
He stopped taking that large pill and has his food cut up into very tiny bites. He will still go into coughing fits while eating or drinking - as in this morning - says something went down the wrong way.

Has anyone else come across this problem? I know it can relate to thyroid (he takes medication for low thyroid and it is supposed to be controlled). Not sure if dementia can cause an increase in aspiration - presume old age can as well. This mornings episode lasted about a half hour, with him drinking a lot of water.

Will does have a problem with swallowing and food or liquids going down the wrong way. I am making an appointment with a referral from our Primary Doctor to an Eye, Ear, Nose and Throat doctor because of his difficulty swallowing and he also has a hearing problem.
Probably have to wait months before seeing this doctor, and the same with his Cardiologist.
Anything serious comes up before the appointments, we will go to the ER, already flooded with COVID patients.
Such a terrible breakdown within our medical system.

We also have a blended family in various locations; Will’s sister is in Batavia , IL (lives the closest and his only sibling), a divorcee with no children, who is content in her expensive senior home with a 5 o’clock Happy-Hour and and has detached herself completely from Will’s health issues (what health issues?)
His only 2 sons are in Texas and North Carolina and they really love their Dad, but not enough to take him into their homes if something happened to me. They would put Will into a Memory Home and hardly see him, but call like they do now. My only 2 sons who live near us would do the same, and visit Will from
time to time.
My only sibling, a younger brother and his wife, are very loving people near our age but have their own health issues. Most of our relatives are very supportive and full of love for us but they have their own issues, whether health-wise or other obligations. And life goes on for them, and that’s all that matters.
Years ago, I met a very nice man from Greece. He told me when he gets old, he’s going back to Greece, because people here do not take care of their older relatives, but in Greece, they do. Now what does that say about us as a country? There are people from other countries living here together in one home, with Grandparents and sons and daughters and great grandchildren, all together helping one another survive - very loving, very happy, very family-oriented and very religious, the way this country should be. Maybe even used to be. How very sad!

Bill has hearing issue as well. I had a cochlear Implant done in winter of last year. When it is off and Hearing aid off I'm pretty well deaf. Robin gets a kick out of our 'strange' conversations as neither Bill nor I can make out what the other is saying. Then when his speech slurs it is really difficult!

Bill kids were so thankful when Robin said she would take care of him - even if something happened to me first. Before Bill's Seroquel kicked in he accused Robin and I plotting against him. Called us every name in the book. It was horrible. He also said that he would tell his kids how terrible we were and they would come and rescue him. I've never told him that his kids indicated they couldn't take care of him (they grew up with some of his anger issues). Shelley has her mom to take care of. If Bill moved in with his son it would destroy his marriage - so not an option.

Robin gives him cookbooks to look through and mark anything that looked good to him and she will fix it. Tonight she is doing his corn fritters as part of dinner. Usually he either won't eat unless it is sweet and even then not very much. She does make amazing meals. I do clean up duty.

She is also a 6th, 7th & 8th grade math teacher and because teachers are so short supply in AZ she also subs English/Reading. So very long days.

Bill has acquired a few close writer friends online over the years. They were getting concerned as no recent blogs or messages to them so I contacted them to update them that he hasn't been going on his computer as he has been having problems using it. They sent some lovely messages back, including writing this lovely blog as tribute.
I've afraid to bring up the computer as when he goes on it there are a LOT of angry outbursts and he will be upset for a few days. Yet I know he would enjoy knowing how much they care. One of those catch 22 positions.
At this point I'm not positive he would even recall who they are, unless it was one of his good days.
Has anyone gone through something like this? Thoughts?
His computer is next to him on the table but I don't think he is even aware of it. He can't use the phone unless I get it on speaker and keep it away from him (otherwise he turns it off or lowers the volume so much he can't hear it. All phone calls, even with kids, last about 2 to 3 minutes before he gives up and says goodbye.
https://www.gwenplano.com/blog-reflections/thank-you-billy-ray-chitwood