How will I get through this

Katcat

Hubby 78 diagnosed in august with amnestic mild cognitive impairment. Memory not good with paying bills or remembering what day it is. Asks all day long what’s today. He still drives and driving is fine. Goes to gym every day. Reads. Doesn’t follow tv shows so good and irritable. So irritating I want to leave. Im still working. I’m 11 years younger and a teacher special needs. I’m feeling stressed more than ever. I cry on my way to work not every day! We are very disconnected because he’s not the guy I married. He’s fading. So how do I get through this and this is just the beginning.

Iris L.

Katcat wrote:

. I’m 11 years younger and a teacher special needs. 

Welcome KitKat.  Your DH has special needs now.  Everything will be different.  Learn from the members here.  Read about anosognosia, a feature of the dementias.  He truly believes he is fine.  You will have to be on the lookout for changes, because he won't be.  

Iris L.

RobertsBrown

Hi Katcat,

I made the mistake of continuing to work when my spouse was in a very similar condition to the one you describe.  When things changed quickly for the worse, I was not ready.  I had to leave work too fast, make financial decisions too fast, and etc.

It happened so fast.  Unbelievably fast.

I strongly suggest that you make your move right now.  Retire on your terms, leave your job on your terms, wind things down fast and clean.

You may have a different and better experience, but if you wait for a 'sign' that it's time for a change, you may be caught unprepared.

Rob's 2 cents.

sandwichone123

Katcat, it sounds like you're very frustrated that dh is not the person you signed up with. I've found that reading here makes it somewhat easier because I can see that other people have the same challenges I have. I am also still working, but on my way to work I am so happy because I will be facing manageable challenges for the next few hours. When I get home I try to remember to be "wife" at least part of the time, rather than spending all my time as caregiver and domestic manager. It is frustrating, but try not to beat yourself up for having normal human emotions. Just realize frustration is the new normal and work on coping skills.

M1

Welcome Katcat, you've come to a good place to help you get through it. I am 15 years younger than my partner, who is now 81 and stage 5, we've been living with this since 2014. She was also very irritable in earlier stages, FWIW that is now gone as she has gotten worse. And yes, as Iris and Rob have said, you are the one who has to change because he won't be able to. You can freely express your grief and anger here, we get it, and it is heartbreaking to lose your spouse this way. It will change the relationship, I come here for the comfort, support and advice that I used to receive from her. But I look at this as part of for better, for worse. I am fortunate that we have had a spectacular and spectacularly happy 27 years together. Not all couples can say that and you can say that here too if need be.

Read a lot of threads and you will learn a lot. Good luck, this is not easy.

Arrowhead

Because of my life trials, I learned that it's amazing what you can do when you have no choice. You are stronger and more capable than you realize. Someday it will become more than you have the capacity to provide, but until then, keep telling yourself that you can do this.

tcrosse

When you're going through Hell, keep going.

JoseyWales

Welcome Katcat. I'm a special education teacher, too. I teach K-2 resource, with some students with emotional disabilities thrown into the mix. For the first 4 years after DH was diagnosed I only taught students with emotional disabilities. Talk about stress!

I now find teaching my escape. I find I have control there, and I just love working with the kids. 

As to how you get through this - planning and one day at a time. I bought a bracelet about 3 years ago that says "Today". That's my motto. But this isn't easy. And the challenges change as the disease progresses. I look back at our long journey and I don't see any "easier" times. It's ALL hard.

toolbeltexpert

Welcome Kat at sorry you had to find this forum but you won't be  sorry. This may be part of the caregivers care. A place to vent,learn and sometimes even laugh. Other than the learning about altzhiemers from the link at the top and videos from great people like Teepa Snow a great resource. Here you get it from the front lines.  daily stuff we all run into and work around others have been successful with and things we need to do like DPOA'S And other legal stuff. Hang it there you got this. It sounds  cliche but one day at a time, the thing at a time.

mrahope

Hello, Kat,

I am in a very similar situation to yours in some ways:  I am 13 years younger than my 83 yo husband who was diagnosed as MCI in 2020.  He, too, still reads and drives (though I think we may be getting close to the end of that), but also has difficulty following some TV programs.

I feel I am lucky that some of his physical issues made me consider retiring about a year before his MCI diagnosis.  If it is financially feasible, you might wish to consider retirement.  I sometimes miss work, but I do have some limited outside the home activities I do which are very enjoyable, even only 3-4 hours a week.  I also count myself lucky to have had a great partnership for most of our married life.

Another suggestion I would make is to seek out support groups in your area, or if none are available, continue to come here.  I am constantly amazed by the wisdom and resourcefulness of the folks here and I have learned a lot.

One thing that helped the irritability for my DH (at least so far) is dealing with a physical condition that was causing him a lot of pain,  If your spouse suffers with physical pain, that can only add to the irritability, in my experience.

Thinking of you with understanding.

Rescue mom

I’m also a younger wife of a person with Alzheimer’s. DH was early stage 5 at Dx about 3 years ago, and is now very solid stage 6. No memory at all of grandkids, nor the kids names. Cannot do *anything* around the house.  Can’t read, can’t follow a normal,conversation. Can’t be in a crowd, freaks out in “strange” places, where he’s been for decades. Had to quit driving very early, lost all sense of direction/location unusually early.

Your DH is still very early in, and my experience was that mine got worse, fast. So my perspective is different. But if if you have any bucket-list things, do as much as you can, fast. I had a successful career I loved, but had to quit to care for him and do everything else. The man I married was gone, but a body remained that needed tending to.

You are not alone, nor unusual. I cannot tall you how many times daily I cried, and still wish daily to just run away. I also developed significant health problems that docs boiled down to stress, then concrete complications.

My therapist constantly says “I don’t know how you all do it” about dementia caregiving. It’s what others said: you do what you have to do.

Some things I think help: keep reading this board. You will learn so much, more here than from any other source, IME,certainly including medical pros.

Try to find a support group IRL. It’s not just “feelings” but also invaluable information about what local resources (aides, attorneys, therapist for you, good docs, adult day care, etc.). Nobody understands 24/7 caregiving except others who’ve been there. You are also likely to make new friends who fit your new life better. (Don’t be surprised when others disappear).

Take care of your own physical health. Don’t let things slide; what looks little can get big if ignored. If/when you get sick, he likely not notice nor be able to help you.

If you can hire any help, do it, for anything/everything. You will be exhausted regardless. Also, it’s often easier to get them used to another person being around, earlier.

Watch your finances. I believed DH for too long when he said he was taking care of bills, taxes, house repairs, etc. He did not—could not—and we were in near crisis before I saw reality.

Yes, Getting through this is incredibly hard. But we just….have to. Day by day.

It also helps me to have something to look forward to—like mini-vacations now that travel is easier. Kids will take DH. It’s amazing how that—something to look forward to—can make such a big difference.

I played that song “when you’re going though hell, keep on going” so much I wore it out.

DrinaJGB

You get through this one day at a time and the best way you can with people who understand like the ones right here on this forum.

  You are going to be surprised what you can do and what you can do without. Find ways to let go of your anxiety and stress that work for you.

  It is a work in progress, but you will do it simply because you have to. You will change with the process---but not necessarily for the worst.

   Fire makes the gold.

carry on

dj

Ed1937

Katcat, welcome to our safe place. We have a good bunch of people here. Iris mentioned anosognosia. If you are a special needs teacher, there is a good chance some of your students are affected by it. Here is a video explaining what it is, and you should know about it. There is nothing wrong with me! Dealing with dementia and Anosognosia. Anosognosia is also prevalent in people with mental problems other than dementia.

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Joydean

Hi Katcat and welcome. I will agree with what others have already said here. It is the best place to find information, understanding and yes friendship. When my DH who has Alzheimer’s is in bed, I come here to how my “friends and family “ are doing. Because that’s what they are to me. Most other friends we had, well they don’t call anyone.  These wonderful people are the ones you can count on and no one judges you here. They tell you the truth. 

Come back often! 

Lorita

Hi Katcat,

 You'll get through it - you're stronger than you think.  You have to do it one day at a time, one hour at a time and sometimes a minute at a time.  You'll learn as you go along and when you have questions, come to this forum and ask them - nothing is too insignificant to ask about. 

 My husband was ten years older than I, too.  I wasn't working out in public at the time he was diagnosed and during my caregiving years but was working on the farm running cattle.  I was fortunate in that he loved to be outside with me and did help so much.

 Try not to think of the future and what it may hold - enjoy the time you have with him now.  Try to be patient as much as you can - I know how hard it can be - but he doesn't remember he's asked that question a few minutes ago.  You'll become his security blanket - the one stable thing in his life as the disease progresses.  As I said, you don't know what you can do until you have to do it.  Someone is always here to answer any questions you may have. 

Katcat

Thanks everyone for your input. At this time hubby is no longer driving. Trying to figure out how to get him to take showers and shave. Anyone?

Ed1937

Here is an ongoing thread that you might want to keep up with. It has some tips, and there should be more coming. Welcome back. https://alzconnected.org/discussion/66692/shaving-and-shower#latest