Thanks for the help as I go through this

mathreader

It is so nice to see others are going through what I am going through. Here is what is hard today:

1. I feel like I am talking in circles, explaining and re-explaining things. Sometimes we talk about a subject just to find out that he has completely lost what that subject was.

2. I was asked where his glasses were no less than 10 times in an hour this morning.

3. Long story, but we need to put the garbage out for pickup on Wednesday nights. This turned into a very long process where he checked and rechecked if the garbage was really in the can and needed me out there the whole time to help.

4. I feel like I'm giving instructions to a 3 year old. One….step….at…a…time.

5. I'm tired of being needed for every little thing. I'm sure most of you feel that way, and I feel so selfish, but I'm tired. Help with picking clothes, help with finding things, help with EVERYTHING!!!

6. When he doesn't understand, he gets angry. Not violent, but just angry and things become my fault.

…20…. I guess I could go on and on.

I love this guy - we have been married 51 years, but this is so hard. Sometimes he realizes it and tries to ask what I want to do, but there is no sense getting excited about doing something because he will be too tired to do it when the time comes.

He feels like he is pretty cognizant. Truth is, not too often. The other day, when I was in the kitchen and he was on the back porch, he called our daughter who lives nearby to ask if I was looking for him. She asked if he was lost - he said no, he could walk back home. We were 20 feet away. Thankfully she checked it out with me.

A couple days later, when going through what was going on in our lives, I told him we had a meeting on Monday (it was Saturday). He thought it was the next day. When I told him, no, we had another day before Monday, he insisted no one ever told him Sunday came before Monday.

I would love to find a support group, but even that seems tough as when I am out of the house he wants to know where I am and what I'm doing. He is insulted if I talk to friends about what I'm going through - he tells me I am taking away his dignity.

A year ago he was diagnosed as Stage 4. I have no idea how long this will go on or what to do while going through this.

What do you do?

M1

At some point you have to get help. You're probably close to needing it, for your own sanity. If there are family members who can spell you, that may work for a while. But beyond that you either hire help at home, find a day program, or line up memory care. As much as i have missed my partner, the help of knowing she is in a safe, controlled environment makes a huge difference. There are no garbage cans to check there. There are no Monday meetings. There are no pets to overfeed. But some of it never gets better: the repetitive questions continue, real conversation is rarely possible. Things still get lost and misplaced. But i can come home to a sane world, where for a few hours a day i can let my guard down.

Stan2

https://alzconnected.org/discussion/69694/thanks-for-the-help-as-i-go-through-this

It sounds like your LO and my DW are in similar places in this journey. I wish I had some magical formula to tell you and make it easier but I don't.

I spend my days walking on eggs, trying to make sure I don't do or say anything that will hurt her feelings. She still takes care of her ADL's but IADL's are another story. She does however insist on doing some of them herself and I want her to feel like she still has some control.

She insists on filling her pillbox once a week. It is quite a chore since she has 10 morning meds and 12 in the evening. I supervise and only give her one med at a time to fill but she will usually get some in the wrong place and we end up dumping them all out, then we determine which one is which and reload.

I asked yesterday if she would be ok with me loading the pillbox and she agreed as long as she can supervise. I hope she remembers.

At the moment she is listening to an investment seminar on her laptop, diligently taking notes and making preparations. When it is over she won't remember what it was about and won't know what her notes are about but it makes her feel productive.

You mentioned finding a group to attend. I highly recommend it. There are some on this thread who don't find them helpful but for me , it is the only time I can actually say what I feel and I value the experience.

As far as advice, I would say you should try to do a little something for yourself any time you can, and try to find some humor in your day.

Hang in there !

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Denise1847

I hope you find some solace in the support you get from this forum. They have kept me somewhat sane. I have learned NOT to tell my DH any plans ahead of time to alleviate the questions. He is not going to remember anyway. For example, my sister occasionally stays with my DH while I go out for a couple of hours. I don't tell him at all. She appears and I say I have got to run some errands and leave. He asks my sister where I went but then that is the end of it. It works with all other plans.

Try to adjust to the new normal of not consulting and planning with your partner as they are unable to make decisions at this point. It will just cause confusion, angst and frustration.

When I don't understand his language, I have learned to say "ah ha" a lot when the conversations don't make sense so that there is an acknowledgeable of what is said without causing frustration.

I put a luggage tracker in his wallet to locate him on my iPhone if he should stray. It gives some sense of security and peace.

Yes, you are essentially speaking to a 8-year-old because of the brain damage. He cannot help his situation. It is never ending, and I just thank God it isn't me with the Alzheimer's.

My DH was diagnosed in 2018, but I knew something was wrong at least 3 years before that, but the doctor dismissed me. I still get angry at the situation, get resentful and am so tired. Don't beat yourself up as you are human. We are all self-protective and wanting a quality of life and that doesn't make you selfish. It is how we are wired.

Every day I pray for God to take him so that he doesn't have to go through the gradual decline to total helplessness. I see my pray as compassionate and loving. I would want that for myself. No one should have to live in such a state of horror, confusion and debilitation.

Quilting brings calm

It does help to have support of people who are in this too.

I have a suggestion on the medication- call local pharmacies and ask the following:

Are you in-network for the insurance and do you package up a persons medications in individual pill packs? My mom gets her medication delivered to her assisted living facility by a local pharmacy in blister packs labeled with the date and time to take it. So three a day: all morning meds, noon med, all evening meds

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mathreader

I actually put an AirTag (Luggage tracker) on the dog's collar. My DH isn't likely to go anywhere without me except maybe to walk the dog, and he usually doesn't bring his wallet when he walks. He does bring a phone, so that's a help. He is so protective of the dog that I know he will never let him get lost.

Also, I started making pill boxes for my husband too, but I do need to check each time that he has taken them. Again, he won't take anything without checking with me first, so I am able to make sure he has the right day and time.

The dependency on me is definitely what I find the hardest part. If I go out for an hour I can count on a call from him asking for help with something. He is no where near ready to be in a managed care home. I'm thinking this stage is probably one of the hardest for the caregiver.

CindyBum

Hi there. Yes to all of that, including feeling selfish and so dang tired. I have found that I go from that feeling of exhaustion and feeling selfish, to deep despair, depression and anger, to I'm fine and I can keep doing it. But, I know that cycle at some point will break and I'll need more help. I'm not there yet, but based on the recent depths of my despair and anger, I know it's coming.

On not remembering when you told him about things upcoming, this one got pretty easy for me after a time, but it sure took a while. I just say, "I'm sorry. I must have forgotten to tell you." Even when I've told my DW several times.

The harder one that I think I've finally surmounted was the time it takes to do things when my DW is involved. I'm cranking through doing so much and sometimes feel like I don't have enough hours in the day. My DW wants so desperately to help with everything. I have accepted some of that help, but switched it to things that don't really matter in what I'm doing. She is a toddler now and trying to help and I've accepted that, so she gets to fold things, or pick up things maybe not even related to what I'm doing. It's distraction to her presented to her as she is helping.

The even bigger hurdle for me was how long everything takes when it's with her "help" and just do to anything when we're together. I finally gave up on that too. I plan for the extra time now. I'm resigned to it, and honestly, it's not so terrible for me now that I've accepted it. What in the heck was a rushing around for anyway?

Hang in there and trust your gut when you think you're ready for help.

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annie51

We can totally understand what you're going through. There are so many things we go through each day, each hour, that only someone in the same situation can understand. I am alone in the caregiving, no children and no family close by, just a few friends that we see occasionally. I am NEVER alone (except for a few minutes a day where he goes out to pick up leaves in the yard). I long for meaningful conversation, so when we're with friends, I talk a mile a minute…then DH gets irritated because I'm talking too much! It's been a tough adjustment to realize that my needs and my desires are on the back burner now. It's hard not to feel like you're being selfish.

I have not been much into journaling (mainly because I don't get time alone to do it), but I began using DayOne journaling app where I record "Daily Joys" and "Challenges". It makes me think each day about the positives while also tracking his progression.

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Sherry LD

I found I needed help in a different way. My DH went through the angry stage last fall and I thought I was going crazy. Found an online therapist who has been awesome for listening and supportive when I need it (Betterhelp). Then I found Dr Natalie Edmonds and the Careblazers thanks to Ed). They have online zoom support meetings and Q&A and other professional doctors that are able to answer questions and give advice. This group on this site is also awesome with their collective knowledge and experience. Use any and all resources available! I believe that is the only way any of us can get “through “ this stage in our lives.
God Bless and know He has your back. 🤗

SDianeL

https://alzconnected.org/discussion/69694/thanks-for-the-help-as-i-go-through-this

read the book “The 36 Hour Day” which was recommended by a nurse and helped me understand the disease and how to be a better caregiver. My DH is now late Stage 5-6 and in a Memory Care Facility. I had to place him there because of my cancer diagnosis. We completely understand how you feel. This forum will help.

mathreader

https://alzconnected.org/discussion/comment/214012#Comment_214012

I really like the journaling idea. I will check out Day One! Thank you

mathreader

Yes, the time it takes to do anything anymore is unbelievable. I will try to remember your advice and remind myself that I'm retired and there is no rush. Thank you

LynnBonser

I also get the feeling being selfish & dealing with a toddler. I don't even know what stage my DH is in as he won't go to the doctor for the tests. (He's in denial.) I guess the upside of that is I don't have to worry about pills.

I'm learning to work on my patience level when he gets angry at me. He tells others I don't feed him. He tells me I don't care about him.

Today he's refusing food & water. He says he'll be dead in two days.

Problem is he's so skinny he just might be. I'm unable to call 911 as he can answer 2 out of the 4 magic questions. I'm not sure he would tell them he wants to die. That all adds up to there's nothing they could do. So why waste their time & aggravate him?

That doesn't mean I won't call them if/when the time comes. I just have to be watchful & wait.

I too pray for his release & to be called home. He's such a prideful man that I can't imagine how this is making him feel. I know he's outwardly in denial, but what does he really know & understand.

Since I'm just now starting to reach out I don't have too many suggestions. I know how much help just calling the 800 number & talking to Sara, Connie, Mia or any of them has been. Every time they've given me reassurance & support. Then we find another step I can take.

Anyway, I feel your pain & frustration. Know you are not alone on this road.

May God hold you & comfort you on this journey.

mathreader

Tonight he was so upset with me! We are renting a house after living on a boat for over 8 years - great years when things were better and he was well. We were home owners before that for almost 50 years. We rented because I need him not to be responsible for fixing, etc the place we live. Tonight he kept asking me if we owned this house. I told him no, that we were renting. He wanted to know who the owners were and how we got the furniture, etc (we have been here since December). My son helped us move in, brought some furniture and we bought furniture at a store. He was so upset and angry thinking it wasn't our house. Of course he knew we were renting at some point. I refused to argue and he went away and fell asleep. Some days are just better than others. Now, I think he has forgotten the whole discussion.

M1

LynnBonser: educate yourself about anosognosia. Your husband truly thinks he's fine and cannot perceive his deficits. This is quite different from denial. It also means that you have to learn workarounds to get things done and cannot count on his cooperation, you will have to learn to take the necessary steps even when it is against his will. Hard lessons i know.

Novice AD Partner-Ca

https://alzconnected.org/discussion/comment/214001#Comment_214001

I like your comment about everything taking so long. I have learned to slow right down and if I'm not too tired, in the right frame of mind - like you - I think "not rushing" is a great way to live! I tell myself, like a mantra, "Just relax, this is NOT going to happen fast!" Because nothing does nowadays :)

l7pla1w2

https://alzconnected.org/discussion/69694/thanks-for-the-help-as-i-go-through-this

You have found a support group, and this is it.

Like you, my LO believes she doesn't have a problem and would interrogate me about any call I might make that suggests she needs help. This group is almost my only support, because I can consult with people here, and DW isn't aware. I am experiencing almost everything you describe.

What do you do?

Struggle day by day. Gradually learn how to deal with the aberrant behavior. Keep an eye out for the eyeglasses, or rings, or wallet that have a habit of being "stolen" so you can f ind them. ("I can't find my eyeglasses. Someone must have stolen them….) Know that you will fail sometimes and become very frustrated.

Yes, it sucks.

SDianeL

https://alzconnected.org/discussion/comment/214298#Comment_214298

We lived & traveled in an RV for 21 years until my DH's diagnosis in 2021. I immediately went to an attorney, got a DPOA, sold the RV, rented an apartment and moved us in right away. He never questioned where we lived but never really settled in there either. Learn to lie to him. Make up a story. Tell him it's temporary until the boat gets fixed, then change the subject. Arguing won't help. It will only make it worse. You can't reason with someone whose "reasoner" is broken. Redirect. My husband is now in memory care. I miss him so much. I miss us. When I visit him he says he wants to go "home" but he no longer knows where home is or that we no longer have a home. I moved in with my daughter after my cancer diagnosis. I tell him he can go home when the doctor says it's OK. He accepts that.