New Here with a Wife With Dementia

bassman73

My wonderful wife of 50 years has developed dementia and is in the early to intermediate stages of the disease. She has no short-term memory and is suffering from incontinence. She loves to walk, but cannot be more than a few feet from the house. Is anyone else dealing with this?

She seems to be generally very happy, despite this new "path" she is on and the knowledge that things will get worse. I am wondering at this stage, how well I will cope and provide for her needs.

charley0419

my Wife of 55 years diagnosed last year moderate on set Dementia ( whatever that means) also anosognosia real bad.

my advise at this point, as I'm k LK earning, do not argue no way you win or explain, be patient (the hardest) and beware of tone of voice. And things change in a moment

ghphotog

My DW started having trouble when she was in her early 60's. For years she was so easy going, easy to care for and I thought to myself, hell this isn't so bad. . . . . . . . . . . .

M1

Welcome to the forum, you will have lots of company here.

Look on the Caregiver's Discussion for a thread called "Excellent Packet for Newcomers" or something similar--it has a lot of information about stages of the disease and things that are frequently referenced. Resources to learn from. You will also learn a lot and find a lot of commiseration if you read a lot of threads.

Hate to say it, but if she's already incontinent she is probably more advanced than you think. that is typically a stage 5 or 6 development (late stage dementia).

Ed1937

Bassman, welcome. "I am wondering at this stage, how well I will cope and provide for her needs." We all wonder that for a while. But you will find that you are much stronger than you can imagine. Stay with the forum to learn how to handle different challenges. Nothing you read will work for everybody, but everything you read will work for somebody. You will get a lot of suggestions based on what has worked for them. Then you have to pick which one you think has the best chance for you and your LO. When things get really tough and you fall, somebody here will be around to help you back up. There is a lot of experience here, and you have to take advantage of that.

bassman73

Thank you, everyone, for your thoughts and information! It all is greatly appreciated.

Stan2

https://alzconnected.org/discussion/comment/197611#Comment_197611

I would also add that if you have access to an in-person support group that you might attend. I go for an hour twice a month and it has become something I value highly.

bassman73

https://alzconnected.org/discussion/comment/197615#Comment_197615

Thank you, Stan. I am looking for a group in my area and believe there may be one nearby.

mrahope

Welcome, bassman73, to the club no one ever wants to be a member of. There are good people here who will offer the wisdom of their experience. It's worth listening. I have asked questions and found perspective that I would have lacked alone.

As well as a support group, I would not hesitate to add individual counseling/therapy for yourself. You're not saying you are mentally ill if you go. It's simply that losing a loved one in this way is one of the most difficult experiences a person can have, and asking for help along the way is profoundly ok.

Anna2022

Welcome, @bassman73

This site has been the most helpful resource I have found. I suggest you read everything here, digest it, then follow what works for your family and situation. As they say here and elsewhere, "when you've seen one person with dementia, you've seen one person with dementia." The dementias manifest differently in each person.

Our journey started in September 2021. And everything has changed.

I joined this site officially in early 2022. I read everything here and at other sites.I started to press for an evaluation of DH but that took almost two years for him to agree to attend. Then 4 months of various testing that showed MCI, with mild to moderate cognitive changes but without an identified dementia pattern. So testing didn't really show much. DH has refused medication so we wait and see what happens next.

Early on, as a result of reading here, I quickly consulted a CELA, on my own, without my DH. That was money well spent. Medicaid will not be an option for us so I contacted my financial advisor and told him what was happening. That was helpful as he put me in touch with several resources locally that have been helpful. I got our financial situation in order. We updated our wills, POAs, etc. We moved money into a small joint account for DH access but all other accounts are now under my sole control. It's an ongoing process to take over our financial, household, medical lives, but I've done a lot!

Emotionally, I have good and bad days. I knew I needed support from people who were knowledgeable. The close friends who know our situation are well meaning, but frankly, clueless. So, I went to a few online support groups, but the format was foreign to me - they asked each person to share, one after another and there was no support amongst the participants. It felt alien after a lifetime of support groups with a vastly different format. I found a friend here at this forum, and we chat via zoom now occasionally. That has been super helpful and life-affirming, :)

I have also found a therapist who specializes in helping people who are caretakers for LO with dementia. She has been a life saver - we don't do traditional therapy (as a retired therapist, I know about what I speak), but she is a trusted confidant, super knowledgeable about the issues, and so very kind and gentle. I can tell her things that I can't share with anyone else. I look forward to our weekly sessions via Zoom.

All said, you have a lot to do but you will find your way! There are many people who can help but at the end of the day, you are in charge and you have to do the work. Just remember, you can do it!