Random Thoughts

aconite

I am thankful for this community and the support it provides. I read more often than I post. May we all find some peace and joy in this holiday season as we traverse this difficult journey.

Now - the random thoughts:

- I participated in a research study for caregivers this fall.  As part of the study, I had a weekly call for 6 weeks from a researcher where I could share my thoughts and feelings.  Very open as to what was discussed.  I didn't realize until afterwards how much these short calls helped my mood.

- My adult children are supportive but not here day-to-day.  On one visit where I was speaking with my son about DH, he let me know that he was "terrified" that he would also suffer from ALZ as he got older.  I hadn't realized that he would feel that fear.

- I participated in an "Anticipatory Grief" virtual seminar.  Helped me to realize the grief I was feeling...loneliness, things we will no longer do (unfulfilled plans), the slow loss of my DH's personality, etc.  But it also helped me to understand that instead of looking at the things that will no longer be, I can have joy in recognizing small wins - things I would never have recognized as positives if things were different. 

- We became affiliated with a local organization providing support for caregivers of persons with dementia. I wasn't sure I needed it at the time since DH is still in the early stages of this disease, but it's been very helpful in helping us find useful resources.  As our needs change, they're there to assist us in finding what is needed.  Weekly fun virtual sessions for me and DH, a scheduled monthly call, and availability at other times if I need it. There's a monthly fee, but it's worth it. 

- If you have an ADRC (Alzheimer's Disease Research Center) near you, I highly recommend looking into it.  I think the services offered may depend on the location. https://www.nia.nih.gov/health/alzheimers-disease-research-centers. The ADRC  affiliated with the University of Pittsburgh is wonderful and serves folks with any kind of dementia.

- DH has many health issues.  If we go down the list of underlying conditions that make COVID worse, he can check off most of them. He also has mobility issues in addition to ALZ. Makes thinking about going anywhere fun difficult (so we really haven't).  I'm tired of the isolation.

- I've only recently realized how much a simple change in routine adds to DH's confusion.  Just going for a blood draw for lab work for an upcoming doctor's visit left him off kilter for several hours.  And longer visits leave him worn out.  My caregiver support contact suggested that perhaps working to remember/being "present" during the visit is real work for him given his lack of short term memory.

- I had a medical scare this fall requiring treatment for a benign growth in my head as an outpatient procedure. All went well and I'm OK. Our kids provided support - one to stay with him and another to drive/be there for me.  I was anxious before the procedure - but couldn't share that with the person who always allayed my fears - DH.  Even when I had the doctor's appointment for assessment and told DH a little about what was going on, he became very worried, and then confused because he couldn't remember why he was worried.  So in the 2-1/2 weeks leading up to the procedure, I didn't mention it again and he gradually forgot to be worried.  And then, I realized that my backup plan for a caregiver wasn't as complete as I thought.  And since our home is not the one where the kids grew up, they didn't really know where things were kept and that made it harder for them - although of course, they were free to look.  I had no symptoms and the growth was only found serendipitously during the MRI that was part of the research study I was in.  However, left untreated, it would have grown to cause hearing loss, balance issues, and facial paralysis. So, my need for that backup plan was unexpected.  Luckily, the caregiver support organization had provided me with the basics to get started and I had started it - but I hadn't expected to need it so soon. Bottom line - that backup caregiver plan is important! 

- I wasn't sure about doing any decorating for Christmas this year.  Thought about skipping it entirely. Didn't do all of the decorating I had sometimes done, but did go ahead and put up the tree - and am so happy I did.  We both enjoy looking at it in the evening.

Enough for now. Thanks again to all of you for sharing!

mrahope

Thanks for sharing, Aconite.  I am particularly interested in the information about "Anticipatory Grief".  I wonder if the seminar you attended is online somewhere.  Also, I, too, am in need of a backup plan for in case I become ill or injured.  Would love to know what kind of local organization is helping you with these issues (even for a fee), since maybe I can find a comparable one in my area.

ghphotog

I'd like to find a local support group here where we can meet face to face but this board has been a great alternative for me.
My wife has a neuro visit Monday and I'm still not sure how to present it to her in such a way that she won't worry or get freaked out. She still doesn't admit anything is wrong and in a way I'm glad she doesn't understand just where she's at. 
I'm hoping the neuro can give us something definite but might not happen after just one visit. They will probably want to run a number of tests or imaging tests and those will scare her. I don't think it will be possible to get her into an MRI machine but we'll see.

I estimate she is in stage 6 somewhere but I could be way off. She might only be in the mid stages which means I still have a long way and many more years to go with this and I don't think I can do another 3-5 years or more.
I feel guilty, selfish and self centered sometimes hoping it will be over soon.
I was and still am I guess, to some degree, a Christian, not a very good one albeit, but one nonetheless. 
We've always been taught that we should lay our lives down for our families as Christ laid his life down for us, even if it kills us. Even though I wouldn't consider myself devout in way shape or form these days I still have years of ingrained theologies, sermons about self sacrifice and duty to lay my life down for my family. That's good as we should all be willing to protect our families but at some point this disease just wears you down little by little.
If I could trade places with my DW I would but this is not a quick calamity and it's over, this disease will last a long long time and many times I just want it to be over and done with. Days drag into weeks, weeks into months and years later I'm still her dealing with it every single day. Another Christmas season coming and going, next year this time I'll probably still be posting this same story but even more tired.

I'm afraid I'll come to the point I will give up hope of ever enjoying life again or having a life of my own again. To me it sounds selfish so hence my guilt.

Well, I hear my wife crying and sobbing so I better check on her.

aconite

The Anticipatory Grief seminar was provided by the local caregiver support group and was not recorded.  However, I did a search online for Anticipatory Grief and received several results.  Here's one that I thought looked promising (and I did see a recording at one of the links, but did not listen to it).

https://med.stanford.edu/parkinsons/caregiver-corner/caregiving-topics/anticipatory-grief.html#:~:text=Anticipatory%20grief%20can%20be%20defined,be%20emotionally%20or%20mentally%20available.

The local support group is through the Presbyterian senior care network here in the Pittsburgh area.  They provide housing options as well as counseling and support services to make aging easier. They are supportive of at-home care.

Ed1937

ghphotog wrote:

I don't think it will be possible to get her into an MRI machine but we'll see.

My wife was claustrophobic. She needed an MRI several years before dementia, but as soon as they put her in the machine, they had to take her back out. They wanted to try again, in another week or two. I told her to shut her eyes before she went in the machine, and keep them closed until it was over. She did that, and was able to get it done. 

Two years ago, I needed an MRI that took a whole hour. I closed my eyes, and I went for the whole hour. That could work for your wife if she can remember to do it. Most of them are much less than an hour. Maybe 15 - 20 minutes or so?

There are also open MRI machines that are much better, but still not completely open. I don't think there are any that are completely open. Good luck with it.

Belldream

I am so happy aconite that the growth was benign, what a relief! I am also happy it was caught in time so as not to have those other issues you describe. 

I am just now exploring back up plans for caregiving so I am glad you brought that up. I'm having difficulty with the idea of a stranger coming in to care for my husband. We do have a resource through my work where I can have 15 visits a year during work hours, so I might have that available for onsite meetings, etc. if a caregiver is actually available. But for personal reasons, I am not sure what resources I have. We do have a Senior Resource Center here in Orlando, so I will contact them.

I found what you said here interesting - "My caregiver support contact suggested that perhaps working to remember/being "present" during the visit is real work for him given his lack of short term memory. " My counselor has recently suggested that DH may be working very hard and using his muscle memory when at home, so as to appear as "normal" as possible. He is currently out of his familiar setting and his mind went on a faraway vacation. I hadn't considered how much work it must be when I take him just to a doctor visit or the grocery store. He had always been so tired afterward and would nap for hours. That would definitely explain it.

I am also very interested in the term you used "anticipatory grief". I am definitely grieving about all the things that we will never do again, all the places we used to go to that may be out of reach now, all the celebrations we always had for so many things, that now he has forgotten all about. I haven't put one single Christmas decoration up, except for a tiny tree in his room in rehab. He doesn't even know it's there, though I show it to him every time I am there. I've told him it's almost Christmas and it's as if he forgot what that means. I don't think he cares. He doesn't seem to notice much anymore, as if his eyes are searching beyond all these familiar things for something else. Perhaps he is concentrating very hard in trying to find himself among the tangles of his brain.