Need to talk to someone

MABKS

My husband is 73. I did not know about anosognosia and I was so relieved to read about it on this site. We moved to another state 5 years ago (right before COVID) to be closer to our daughter, her husband and our grandson. It has been a rough transition for my husband. COVID kept us from meeting new people and my husband had had little or no motivation to pursue the interests he had in our home town once COVID was over. I began noticing cognitive changes about 18 months ago and finally got him to see a physician at a memory clinic. She told him he has "mild cognitive issues" but he has the Alzheimer's gene and poor scores on all of the cognitive tests. He is currently taking Donepezil. I am struggling with repeating myself every time we have a conversation. Actually, we really don't often have 2 way conversations because he has trouble keeping track of what has been said. He refuses to tell our daughter about his diagnosis because he says he knows he will get better and then there will be nothing to talk about. My daughter and I are very close and of course, she and her family have noticed the changes in him as well and it is very difficult to deal with all of these emotions and aggravations on my own. She doesn't even know he has been to see a doctor about his cognitive issues.

We have all our estate planning and such taken care of so that is not a concern. I feel like I am not being a supportive spouse when I lose my temper or get frustrated with his constant questions about things we just discussed. He is an engineer and has always wanted to know all the details. Perhaps I am giving him too many details at this time--I just don't know how to communicate with him any more. There are so many little things that go on every day that I am having trouble dealing with. I know he can't help it but I could use some advice on what I can do to make things easier for me. I am so worried about him and know that this will be a long road. How will I be able to handle what is to come if I can't even get through this early stage?

Biggles

it is a long long lonely road and doesn’t get any better, we just learn to cope better. I’m sitting at my sewing machine about to snatch some precious moments for myself, self preservation is upmost. I have a cup of tea and I took DH a mug of cool drinking chocolate, he is fiddling with ancient cameras that no longer work. It’s hard I’ve also started snatching moments locked in the bathroom with a favourite book. I practice predicting what is required then moving on to something I can get some enjoyment out of. I pruned a couple of trees in the garden at6.30am this morning and listened to the birds. It doesn’t stop the frustration, loneliness or sadness but it does help. Take care we are all on this awful journey.

M1

Welcome to the forum. Frustration with repetition is one of the first things that brought me to this site. I ended up talking to the folks here and realized that I had more or less already lost her. Sadly it changes your relationship forever, you have to learn that you are in charge now, and you learn not to share details, and you become inured to the repetition and grieve that you will no longer have real conversations. It's a process.

II would encourage you to tell your daughter, you are going to need her help. She probably already knows on some level. Neither of you has to discuss it with him though. Most spouses here never discuss the dementia diagnosis with their affected partner, because of the high prevalence of anosognosia.

when you say you have done your estate planning, be sure that that includes your holding durable power of attorney for him for healthcare and finances, you will need it when the day comes that you have to make decisions without his consent. Likewise, someone besides him should hold the same for you and be your executor , and there should be a backup POA named for him should something happen to you. A sad truth is that at least a third of caregiver spouses die before their demented spouse. I may be preaching to the choir here, but you should check your documents.

you have come to a good place for advice and support.

Kat63

Welcome to our group that we all wish we didn’t need, but so happy to have to help us navigate this terrible disease. Like others have said, dealing with the repetition and communication problem is a process. Once I accepted that my DH was not doing these things on purpose but rather he has a disease that has damaged his brain, that helped me and how I handled the situation. Please read as much as you can from others on this site as well as from professionals such as Tam Cummings.

Denise1847

I am so sorry that you are going through this. It is a long, hard road. You need to take matters into your own hands and tell your daughter, get counseling and accept that you husband is unable to see that he has a cognitive problem. You have to find ways of working around his dementia mind. Unfortunately, your relationship will never be the same. Instead of having a partner, your relationship will become more of parent/child. Make time for yourself as much as you can. Get out as much as you can. If there are trips you want to take, do it now. Is there something that brings you peace or an escape, like reading? Find someone you can talk to. Is there a person who has gone through this experience? Of course you have us - believe me, this forum has saved me.

While it is a tough road, you will get stronger and you will get through it. There will be an end to this.

WIGO23

My DH also has “MCI”. What does that even mean?

Nothing about repetitious questions and behaviors, shadowing my every move, being unable to complete tasks he could do easily before, forgetting our address, forgetting the password to his phone and on and on seems “MILD” to me.

I too wonder if I can deal with the 24/7 hyper vigilant care that seems to be needed. Everyday it seems I am reminded that I am often reacting to all of this in unproductive and unhelpful ways yet trying to do the best I can. Is my best good enough? I just don’t know.

SDianeL

Ditto what others have posted. In addition read the book “The 36 Hour Day” which was recommended by a nurse and really helped me after my husband’s diagnosis. This comment by someone on this site helped me… you can’t reason with someone whose reasoner is broken. I started thinking of my husband as my patient and me his nurse since we no longer had a spousal relationship. It’s a terrifying & heartbreaking disease. Tell your daughter asap and get someone to stay with him so you can get breaks.

justbreathe2

Hi MABKS, M1 has given me good advice as well as others here.

My DH was diagnosed with MCI two years ago. Our story is similar. He was an Engineer and talented man with many hobbies and had a pilots license. He loved to fly since he was in college. He is 78.

At first I would argue about dates, helping him with his iPhone, tv remote, etc. that were never a problem. We were both in denial because he could still do some things well. But as time went on there were many things I missed. One day I asked him if he remembered our wedding and learned that and other memories were gone…. It was my wake up to this disease. Few years before the diagnosis he had anger with me, neighbors, family…so unlike him. He knew something was wrong long before it was noticeable.

First thing I did was read about this disease. The 36-Hour Day is family guide that was very helpful. Our estate planning, POA was revised and thankful it was done early.

You will never win an argument, so I got in the habit of walking away, or distracting him. I never argue with him now. I try to keep the days calm, organized, and think before I speak. Sometimes I have to tell little white lies to avoid upsetting him. At first, I thought it was disloyal to him by telling others. He does not know I have told the family. I never mention dementia, Alz…we say memory problems.

It’s a very sad and a difficult process. I was lucky that he did not fight me with giving up his driving/flying license. We talked about putting others in danger, or being sued of our life savings. He was so very sad to give up something he loved all his life.

It helps if you have someone to talk to. My wonderful neighbor walks with me daily and listens. I can leave him for short periods and have cameras around house. I don’t go as much these days.

The repeating and forgetting things drives me crazy. He is on Donepezil and started Zoloft several months ago. It did help with his anxiety, but seeing more anxiety in him lately. May talk to doctor about increasing the dosage at next appointment.

Last week he had wisdom teeth extracted. He cannot follow instructions, and argues, so it has been a stressful week. Today, he was having pain bc of bone fragment to be expected. I suggested that we go have it checked. He liked the oral surgeon, but got angry today saying he doesn’t trust him and wanted to go to his regular dentist. Said oral surgeon would not own up to messing up. I had no intention of going elsewhere. So I said if that’s what you want, but we won’t be able to get in quickly…maybe a month. So he agreed to seeing the oral surgeon to remove the fragment. He was happy and felt better.

I feel he has declined more in the last few months. Keeping him busy is difficult. We work on puzzles daily. Some days I see a 5 year old in him. He likes to be helpful and will clear dishwasher every a.m., vacuums, or help me with I ask. He follows me everywhere.

Sorry for this long reply. You will learn as time goes on. I come to this site often and it is very helpful.

harshedbuzz

@MABKS

Hi and welcome. I am sorry for your need to be here but pleased you found this place.

M1 gave you excellent advice about the POAs needed in this situation.

I would loop your daughter in; this information about her dad's condition isn't strictly his to share as it impacts the entire family to some degree. Practically speaking, if something should happen to you (and 1/3 of caregivers predecease their PWD) the more she knows about his condition that better.

HB

TyroneSlothrop

I have found it so helpful to share my DW’s condition with everyone who loves her. They are all sympathetic, grateful to me for taking care of her, and show their support when they can. Don’t hold back; you need the village to stay strong yourself.

annie51

Welcome to this sanity-saving forum! So many others have given you great advice and insight.
My DH was also an engineer so it was excruciating to see him struggling take measurements or figure out a problem. Early on, I was very disappointed in myself for how I was handling the repetition and lack of abilities, quick to get irritated or angry. Over time it does become easier to deal with the behaviors and figuring out how best to react and you start feeling better about yourself. But we’re human and we’ll have bad days - we have to realize we’re human and move on.
The suggested book 36 Hour Day is a great book. Someone here also recommended another great book “Thoughtful Dementia Care: Understanding the Dementia Experience” by Jennifer Ghent- Fuller.

mathreader

https://alzconnected.org/discussion/comment/225559#Comment_225559

Wow - your story is so close to mine. My husband is an engineer too and often blames his obsessiveness on that fact. He also was a pilot, and we owned our own plane for several years. It was great to fly around to see our kids who lived a few hours away. Unfortunately, flying was his real hobby and he doesn't have others to speak of. I wish he did! Now he is so dependent on me and I am finding this so hard. I have had my own hobbies and friends that have since had to go by the wayside as I take care of him. Even going to run errands for a couple of hours is difficult as he "needs" me back for some small emergency, such as his iPad isn't working (it is, it's just user error). Hardest for me these days - a regular conversation is so hard as he doesn't follow what I am saying, even if it's in the simplest terms , and he doesn't believe this is our home. He always wants to go to "the other house" although there is none. He gets so angry and upset about this other house. I am not sure where to go from here, but it's nice to be able to vent

justbreathe2

That is something they both own their own planes! That was my husband’s biggest hobby too. My husband could fix anything. He has a workshop filled with every tool. He doesn’t want to get rid of anything. He used to spend hours in basement. He used to read a book a week. We always enjoyed watching movies, but he no longer can follow.

Yes, he is dependent on me too. Doesn’t like me to be gone too long. I don’t have much of life these days. I miss my friends, family, and just going places. He did a lot of traveling when working. Retirement was difficult for him…and ME too. He was always busy guy. Our conversations are limited too. He has forgotten all our memories and pasts. My DH doesn’t remember our other homes.

One day, I will have to look into having someone stay with him. I know he will not like it. My short trips out are always rushed. I try to take it day by day. It worries me to think about the future. I started to write a journal and jot down dates as things happen with medications, diagnoses, etc. and my thoughts. When I go back to read I realize how much he has declined.

MABKS

Thank you all so much for your kinds words and advice. Just knowing that there are others going through the exact same thing has really helped ease my mind. I am beginning to see things differently and think I can make some adjustments in my behavior to get through this time in our lives. We have had 50 amazing years together and I am so thankful for that and will try to remember there will be good days along with the bad. I am going to take everyone's advice and will tell my daughter very soon. As some of you have suggested, I'm sure she already knows but putting it out there as a reality for her will be difficult for her to adjust to and I know she will need time to come to terms with what diagnosis means. I have checked our estate documents and all the necessary power of attorney paperwork is in place. Our daughter is listed as secondary for both of us and then her husband is the next on the list. Thanks for the reminder to look at that paperwork. One less thing to worry about. I have been dwelling a bit too much on "what will happen when he needs more help or when I have to move him to a memory care place". I will try to focus less on that and just enjoy each day as it comes and try to keep both of us in as good a mood as possible. Thanks again to all of you—you have no idea how much you have helped. I will continue to be part of this community and hopefully, I"ll get the chance to help someone myself.

midge333

@MABKS : You want your daughter to be your primary for both durable POA and medical POA. Your husband can no longer function in that role.

MABKS

https://alzconnected.org/discussion/comment/225751#Comment_225751

That's exactly how our documents are set up. I didn't even realize there were 2 different POAs until I checked our estate documents as several people on this site suggested. I am overwhelmed by the kindnesses of this community.

Sallymander

Learning so much here. Thank you. I also advise the 36 Hour Day. I bought it and didn't read it for a while because it was scary. So is this discussion. But better armed…and prepared.

I have a POA/ finances question, but I'm going to begin a new discussion.