Thoughts

PKidd

I went to every doc appt. Kept telling them about the continued memory loss, personality changes. He is freezing all the time and continues to loose weight. He scored a 10/30 on his SLUMS. I felt like I was banging my head on a brick wall…like no one was listening. I'm witnessing this slow, agonizing decline that I can't fix, I can't stop it. I can't ignore it, cant wish it away. I cant even love it away. The person who changed my life, the love of my life is slowly disappearing.

I am so grateful to have found this group! I feel truly understood for the first time in several years : )

PKidd

Jeanne C.

I am glad you found us. Dementia is hard. Hard on the person with dementia. Hard on the people who love them. We really do lean on each other in this group. The diagnosis process was especially rough and then it took time to adjust. I feel like I keep adjusting every day.

Something to consider: When my husband had drastic weight loss, his doc referred us to hospice. I didn't think we were there yet, but scheduled the evaluation. He was accepted and it has been amazing. So much more help than we were getting. I'm not saying you're ready for it yet, but I encourage you to consider it in the future.

Hang in there and be kind to yourself.

White Crane

PKidd, I'm so sorry that you don't think you are being listened to. And I can understand. It took over a year for my husband's doctor to take my concerns seriously. I knew something was wrong but the doctor just laughed it off. I'm glad you found this group as everyone here understands and tries to help.

Brenda

Quilting brings calm

I’ve come to believe that part of the reason doctors don’t seem to listen is that there’s not much they can do. The medications that supposedly slow it down don’t really do much for most people. All they can really do is treat symptoms such as agitation with mood altering medications. They can’t force you to put them in AL or MC- they can only recommend it. They can’t really even recommend a particular facility. They can refer you to hospice when the time comes. Some of the good ones will refer you to this website for moral support.

M1

True that the doctors cannot really help much. So hard that we all are left scrambling to re-invent the wheel. Reminds me of Bill's post "The cavalry is not coming…." may see if I can find that and bring it back up. Many need to read it. Perhaps needs to be in the new members packet…though it's so frightening it might be offputting to many.

concerned_sister

"So hard that we all are left scrambling to re-invent the wheel."

Amen to that. As our group of siblings was coming to understand the deficits we were seeing in our DB, the oldest made a similar observation, and encouraged me to find a group such as this. He just knew we should not all have to try to reinvent the wheel by ourselves. I wish I could remember her words more clearly, but Iris once observed I had a masterclass in undertanding dementia from the collective wisdom of this group.

Jeanne C.

https://alzconnected.org/discussion/comment/211048#Comment_211048

Yes, it's in the new caregivers group. I wasn't ready for the post when I first started with this group, but when I was ready, it saved me.

SDianeL

https://alzconnected.org/discussion/69389/thoughts

so sorry you are not being heard. Keep a running list of his behaviors and take to every doctor's appointment. That helped me communicate with them.

Belle

@PKidd same, same. DH still does not have a diagnosis of dementia from a neurologist. Well, he did by the neuropsych but the neurologist walked it back. That was two years ago, this August he goes through another round of testing and maybe then they will finally diagnose it but I'm not holding my breath. Every time it's something different - memory loss, migraines, encephalopathy from his autoimmune disease, depression, impairment that's not neurodegenerative…he is clearly deteriorating cognitively I can see that. And his neuropsych tests and MMSE scores have been slowly dropping over the last 8 years.

If your DH is like mine he can act 'fairly' normal for a short amount of time and he somehow manages to do that in the neuro appointments and with his psychiatrist. I do tell them everything but it doesn't seem to count for much. Even the nurses in the hospital he was in last year were arguing with me that he was not impaired while I had a geriatric case manager evaluating him for placement in AL. She agreed he was going to need placement sooner than later but it was so frustrating! You know what's going on and if you have to switch doctors until you get someone to listen to you especially if you need services that you can't access without a diagnosis. Sorry this is so hard on everyone.

janeedee

https://alzconnected.org/discussion/69389/thoughts

My DH is always freezing too, losing weight also although he eats well. He was wearing gloves today - it was 85 degrees. I did purchase electronic hand warmers on Amazon $30 - cheaper than a box of the disposable ones.
I’m right there with ya - this is hard.

https://teepasnow.com/blog/teepas-tips-to-help-a-person-living-with-dementia-who-feels-cold/#:~:text=It%20is%20very%20common%20for,says%20they're%20feeling%20chilly.