Checking in - early October

Anna2022

This is my second post. I'm new to these message boards and am learning the ins-and-outs of how to post.

I took your advice and consulted with an certified elder care lawyer. It was helpful and I am now getting medical and financial POAs drafted. We also are working on revising our will and other estate paperwork as per lawyer's advice. Thank you for the input!

I've contacted an old friend whose wife died of Alzheimer's a few years ago and asked if he would be willing to talk sometime. He said yes. I've also got a list of caregiver support groups in the area, but feel its too early to attend because DH has not been diagnosed.  Is it too early?

A few weeks ago, DH and I went to lunch with a friend, who pulled me aside afterwards to ask about DH, saying that she had noticed his struggles with memory during this lunch and one time before. It was jolting to hear someone else observe and comment on what was happening but it also confirmed my observations. The friend asked what she could do to support and reported that she had experience with others with cognitive issues -  a good ally to have in all this. I said to please continue to include DH in activities. This friend has since taken DH out for lunch again and reported back. It felt good to have some support.

Here are other things I've noticed in addition to short term memory issues:

 1) He struggles with making any decision, often deciding one thing then contradicting himself a few sentences later. He usually ends a discussion by that he will do whatever I want. It's hard to hear this after a lifetime of collaboration. I'm learning that I will need to make all the decisions as we move forward but for now I'm still asking his opinion. 

 2) The repetitive questioning comes and goes, and he now asks, "have I already asked that question?" sometimes after asking the question several times and sometimes as the first question. I am learning about true patience -something that I never knew I possessed.

 3) He has lost interest in doing most activities he used to enjoy - his interest in these has obviously diminished over the course of the last year. but now he say's he's "done, tired, and worn out."

I find that I listen for signs of progression each day. My heart skips a beat each time I hear the evidence... but I am still trying to live one day at a time, all the while trying to plan ahead.

Thank you for being here. It helps me each time I read your posts.

Ed1937

Anna, I'm glad you are getting things under control. It is not too early to attend support groups. I have to cut this short because something just came up. But thanks for the update.

Lynne D

Anna, congratulations on the legal progress you have made, and on having such a supportive friend.

Hoot619

Anna,

You took advice and used it and it sounds like you are doing very good.  That old friend is a friend indeed.  I got advice too but didn't do it right away.  Be prepared you never can tell how fast the journey can be. I think you are doing a wonderful job.

ElCy

Anna, I don’t think it’s too early to find a support group. My DH has not been officially diagnosed except for MCI in 2019 with the potential for Alzheimer’s. However, with Covid  he hasn’t been back to the doctor and now refuses to go. But it is very obvious he has declined and will continue to decline without a diagnosis. 

I too am always on the lookout for everything he says or does. Feels like I’m always on the edge judging him. It’s very unsettling but I think it’s something we all go through. Get support wherever you can find it.

You may want to add your location in your profile. Other members may be of great help if they know where you reside.

PlentyQuiet

Hi Anna, 

Most of the support groups are just called Caregiver Support Groups. You are a caregiver regardless of your DH's diagnosis. 

I was dealing with imposter syndrome at my first few meetings (DH was not yet diagnosed  either). The facilitator picked up on it and spelled it out for me after the meeting. 

You are a caregiver and deserve support. I'm so glad you have the groups and two caring people.

Good job on getting the legal structure in place, it will give you peace of mind.

Berryette

Anna-  I feel that I am still a newby to this group-  but everyone has made me feel welcome- I am sure you feel it too.  My DH memory issues began about 5 yrs ago.  I can see our daily lives in the things you posted- but I am so glad that you are taking care of the legal things now.  I did not and now my DH gets suspicious when I try to discuss getting these things in order.  So I am very happy that you will have those things out of the way and can just focus on his care.  The decision making is something I have struggled with.  Not making decisions- but the constant worry that he will decide he disagrees with a decision and the havoc that could cause.  Or as you mentioned- his thoughts can change from one minute to the next.  Make sure you do not let the frienships you have go by the wayside.  You will need that support and encouragment more and more as you go along.  God bless you and your DH.  Count me as one of your encouragers!!

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Iris L.

Anna2022 wrote:

Here are other things I've noticed in addition to short term memory issues:

 1) He struggles with making any decision, often deciding one thing then contradicting himself a few sentences later. He usually ends a discussion by that he will do whatever I want. It's hard to hear this after a lifetime of collaboration. I'm learning that I will need to make all the decisions as we move forward but for now I'm still asking his opinion. 

Anna, I have a diagnosis of cognitive impairment nos.  Yes, making decisions is hard.  It will help him if you reduce putting the burden of decision-making on him.  Yes, decision-making is a burden.  I find it distressing.

 3) He has lost interest in doing most activities he used to enjoy - his interest in these has obviously diminished over the course of the last year. but now he say's he's "done, tired, and worn out."

He can no longer initiate tasks or follow sequences that is needed for activities.  I have the same difficulties.  Try to find easy activities that he can still do.

Read a lot of threads; the members will help you.

Iris

Anna2022

Thank you for the feedback. It is calming to have you all post and reply. I feel seen. Thank you, thank you, thank you.

Anna2022

Thanks, Elcy. Good idea to add my location! I just can't seem to find out how to do that. Any suggestions?

M1

Hi Anna.  All that you are observing is important and important to convey to his healthcare team also.  Sounds like you are witnessing first hand that Alzheimer's involves so much more than just short-term memory loss, it affects multiple areas of brain function including loss of executive function--that's the inability to make decisions you are seeing--and loss of interest, also called apathy.  Both are very common, and while outside support (usually from the primary caregiver) can help for a while, both are progressive parts of the disease.  Others notice loss of spatial perception--that was very prominent in my partner--and eventually loss of ability to interpret sounds and sights (inability to follow television programs, for example, and loss of the ability to comprehend written material).

The fact that others are noticing usually means at least stage 4 disease--if you're not familiar with it, look up Tam Cummings' stages of dementia, it's a pretty good (but not absolute) overview of what changes show up when.

ElCy

Once you are signed in click on You and EDIT PROFILE there’s a place that asks where you live.

Gig Harbor

Hi Anna,

It is definitely not too early to join a group. In my group we like to have new people. It feels good to help someone and to be able to answer their questions. Each new member becomes a friend. We do meet weekly so not everyone comes to every meeting but some of us do. The members who have lost spouses often continue to come because they can offer a special kind of support. They know what those in the trenches are going thru. It is just so great to be able to walk into a room where everyone understands you. I hope you can find a group. If one doesn’t meet your needs try others.

Anna2022

Thank you all for the replies. Because of your encouragement, I am actively looking for support groups in my area. Thanks again for being here!