Floundering.

Katielu

My 72 year old husband was given a MCI diagnosis inn Jan 2023. He feels it is not correct. I agree but for different reasons. I fee he is further into it than that. He no longer manages our money, has more issues with short term memory ( but sometimes it’s ok) he cannot make decisions quickly.

we are adding a screen room to our condo and every time he sees the quote it is like it is new info, he is wondering how we will pay for it ( we have discussed 8 time now)

last week I was “ taking all his money” and was surprised when I opened the investments to show him there have been No withdrawals made.

i am 12 years younger and still working and not sure how I will manage this. I am a nurse and resourceful, but few like I am drowning in this one.

not sure I am looking for answers, just venting. And all my legal work is in order. I have checked with my attorney.

Iris L.

Welcome Katielu. The other members will have a great deal of good information for you. But I want to alert you to anosognosia, a characteristic of dementia. This means that the PWD (person with dementia) is unaware of having dementia and of being compromised. They may be aware that something is wrong, but they don't understand that they have dementia. Thus they grasp for a reason and usual blame the person around them as causing their new problems. This is not personal and this is not denial. There is no way to change it. What you will have to do is to learn work-arounds which the members will describe. Read the online reading material and many threads to help you get a handle on your new caregiving role. Remember, he can't remember what you tell him.

Iris

Katielu

That’s the hard part, sometimes he DOES remember. Someone told me his brain is like a short circuit, sometimes it works and sometimes it doesn’t. The the times it doesn’t work will get more frequent. I get that, but I never know when he will remember and when he won’t. I will say, he seems to remember less. I try to explain when he doesn’t remember but apparently I have the wrong tone of voice, I’m trying to figure it out myself but sometimes he feels I am being condescending. I’m not trying to be, and that is not my intended tone. So today, I am more quiet as I am tired of repeating ( and he keeps walking into my office while I work) and I don’t want to snap, so now he has been asking me if I am angry or upset. I can’t win this.

Katielu

But Iris, thank you for the information.

TyroneSlothrop

Katie Lu,

I am where you are, maybe a little further down this inexorable slope, with my DW. Suspicion, uncharacteristic blaming, and NOT a steady state. There is no predicting, even from minute to minute, whether she remembers, recognizes me, or accepts the explanation she adopted just now. I’m learning, slowly, to engage without responding, to reassure her without explaining, without asking her to learn anything new.

It sucks.

— Tyrone

Iris L.

Katielu, you CAN win this if you think of winning as doing the best you can do. You will not win if you think you can "fix" dementia or if you try to be perfect. That just doesn't work.

You have to learn to go with the flow. True, his memory isn't completely gone, but expecting him to remember like before will lead to headache. If you realize that he repeats himself because he doesn't remember, it can help you to moderate your own responses. You will have to figure out how to maneuver so as to make things easier for you. Easier, not easy.

Limit "trying to explain". Use comforting language.

Be aware that PWDs gradually lose verbal language skills, but can read body language cues for a long time. This means they can be sensitive to tone of voice, eye rolling, grimaces and the like. A big part of caregiving is learning a new way of communicating. The members know and will share.

Iris

M1

Hi Katie. It's a real learning curve to change the patterns of communication you are used to with your spouse. You can no longer try to explain or reason with him, and while this feels to you like you are withholding information, in fact Tyrone has it right: you have to figure out how to engage without responding or reassure without explaining. The addition to your condo should just happen, and you don't discuss it with him any more, you don't even tell him ahead of time that the workers are coming (you may need to warn the workers though). Just say it's paid for, if you have to say anything. I know this takes a lot of getting used to.

He probably is further along than he was told. I think a lot of providers underplay the degree of impairment when they first make a diagnosis --not sure why, but we see it all the time.

Katielu

Thank you all, engage without responding, reassure without explaining… I can learn. What choice do I have?

Denise1847

Hi Katie,

I would highly recommend reading the "36 hour day." Look up Tepa Snow on You Tube and listen to the people on this site. They have become my friends. Your DH cannot help the behavior. The dementia causes frustration and fear and then they act out. It isn't personal but it does feel like it.

Ed1937

Hi Katie. I know exactly what it is like when they remember today, but can't remember tomorrow, or even a few hours from now. It's a roller coaster that is no fun at all.

Has your attorney protected any of your assets? If not, you should see a CELA (certified elder law attorney). They have the knowledge to protect whatever is lawful to do. These attorneys are specialized for this need. I'm guessing you have POA in order. If not, they can handle that too.

SDianeL

Hi Katie, I know exactly what you're going thru. My DH was diagnosed 2 years ago. It's minute by minute. Some days are hell some are OK. Today was hell. He recently said to me "I don't have dementia do I" -- He also says I talk to him like a child and am condescending. I try to not be, I'm just trying to help him. My husband lost his reasoning and logic. Lost his emotions except anger. He's angry at the disease not at me. Now he can no longer use a phone, he's forgetting the names of the kids and grandkids and doesn't understand family relationships. Call his grandson his daughter's brother. He no longer recognizes some foods. He can't think of words of objects and gets angry if I can't read his mind. Definitely get the book "The 36 Hour Day" it helped me with getting him to shower and understanding what may come next. If your husband is staying alone, you should have him evaluated by a case worker. Our case worker asked my DH what would he do if a fire broke out in our apartment and he waited a long time to answer. Then his answer was "I would try to put out the fire" ... she asked what else and he never answered. So she said he should never be left alone. I got the PCP to prescribe an alert button to call for help if something happened to me, because he wouldn't know what to do. One important thing. They learn to overcome & adapt to their memory loss and hide it. Did he have the 3 hour Neuro Psychologist test? That was what made me realize my DH could no longer drive a car. He has visuospatial issues & can't tell distance, speed or time. He can't tell time using an analog watch. I got him a digital clock with the day, date & time. Sorry about my long answer. Please stay in touch. You will need this group.

ImMaggieMae

https://alzconnected.org/discussion/comment/175656#Comment_175656

Iris, thank you for your comments. We are well into the journey, but what you wrote was exactly what I needed to hear tonight. All things that I know but that I sometimes forget, especially when things have been going well and then a frustrating day or afternoon comes along. Thank you.

Elshack

Katielu,

I agree with the others that read all you can re: dementia. 36 hr Day is very informative. My DH is past the repeating questions stage ( he is now in MC and says very little ) but I found if I responded using the same few words in a gentle tone to the same question that usually worked. DH: where are we going? Me: to get pizza. This probably happened 10 x within a 10 min drive. This was a couple of years ago.

There is a rough road ahead. This site is a life saver. We have all been there. I found that it was important for me to look directly at my husband when responding to his questions when we were at home and not in the car and have a pleasant tone in my voice and pleasant look on my face. There will come a day when you will look back on these days and realize that they were the good days. I am glad you have your legal affairs in order. No need to respond to him with involved explanations but just keeping a reassuring and pleasant tone goes a long way. You can do this!

Katielu

Thank you all. Last week I went to a support group and they recommended the 35 hour day. I am working my way thru that.

he had a 4 hour neuropaych eval in Jan 23, and they told him he could drive, no idea why. I now tell him I will drive, and that I not comfortable with his driving.

last night, I gave very short responses when he attempted to review finances again ( I don’t know how many time we have done this since Friday).

I appreciate all of the above info. I am sure I will be back for more input. I still need to be able to work, had not thought about what he might do in an emergency when he is alone. Lots of work to do. Bless you all for the care you provide the the info you shared.