visit with PCP

Timmyd

We had a regular visit with our PCP today. As is often the case, our loved ones are further along than we recognize or admit. I have my DW in early stage 6. The PCP evaluated both of us and said I should start looking into memory care facilities. The good ones have waiting lists and I am supposed to be prepared for the worst. I was devastated to hear that. I did not think we were close to that yet. I lost it in front of the doctor and my DW. DW could not follow the conversation about MC but she could tell how upset I was and began consoling me. The sadness from our condition seems endless.

Russinator

((HUGS))

Anna2022

I'm so sorry, @Timmyd. I understand. When the PCP suggested to my DH that he not drive, I started crying. DH was so very confused as to why I was crying. The whole thing was so very sad. Hang in there - we understand!!

annie51

So sorry @Timmyd. Everything about this disease is awful! May I ask what the PCP did to evaluate you both?

Timmyd

https://alzconnected.org/discussion/comment/241067#Comment_241067

My DW's PCP gave her a standard "check-up" but was able to judge disease progression based upon how she followed (or failed to) some basic instructions. The PCP asked me some questions about our home situation, respite and such. I am guessing she has noticed some deterioration in my mood compared with past visits. I think she fears I am slipping away into zombie care giver mode and wants to be sure I keep aware of other options.

annie51

https://alzconnected.org/discussion/comment/241068#Comment_241068

Thanks for that info.

SDianeL

so sorry. I too didn’t realize how my DH was progressing. So I started keeping a list of my husbands behaviors. I was so busy caring for him that I didn’t realize until I looked back at the list. I sent the list to his doctors monthly after that. Your doctor is wise to give you that advice. We know how you feel. Hugs. 💜

debriesea

There is a form to assess the caregiver’s burden that I printed out and occasionally reassess myself. This may be some of the questions that the Dr. asked Timmyd.

Google: Zarit Burden Interview.

Jgirl57

So very sorry; the realities of progression is heartbreaking. (((Hugs)))

blacksparky

I have been keeping a daily journal writing about my DW’s day. The other night I decided to go back about 5 months ago and compared it to current and I was shocked to see how much she has changed. Since I am with her everyday, I guess I didn’t realize the change. Can I ask you if your DW can still do her ADL’s ? My DW still does her ADL’s but is needing a little help sometimes. She has EO.

Timmyd

https://alzconnected.org/discussion/comment/241125#Comment_241125

My DW with EO, diagnosed in 2022 as stage 4. At that point, all ADLs were in place. Her cooking was getting suspect, and it was obvious she should stop driving. Today she is fully ambulatory, and reasonably well coordinated. She uses the toilet without prompting or assistance but she is not great with cleaning after #2. . She can eat just fine, and sometimes even find snacks in the fridge or pantry. She will not dress without prompting and assistance. She will not bathe without prompting and assistance. Of the big 5 ADLs, dressing and bathing have been lost, but she is generally cooperative to the needed assistance.

WIGO23

Timmyd, please accept my concern and empathy. This journey is so very difficult and sad for our LO and for us caregivers. Please trust your own heart and judgment. You are the expert here. You are the one who knows what you can do and what you cannot.

My sense is that I have to trust myself on the decisions I make for my DH because I am the one who has witnessed his life, know him best, cared for him and loved him more than anyone else.

Russinator

((HUGS))