Mayo Clinic Connect
Does anyone else familiar with this ? My husband was diagnosed at age 51 and is now 62.
Liked by Scott, Volunteer Mentor
My husband was diagnosed with primary progressive aphasia at 64. He was also diagnosed with posterior cortical atrophy at that time. That was 5 years ago and in that time he has gotten a lot worse. Most of the tome I have no idea what he is talking about. I am sometimes able to figure it out…that's a good day! He gets really frustrated with his inability to say what he means.
He also has a lot of visual and cognitive issues. I have to help him with pretty much everything. It is a very demanding, stressful, and scary illness.
Stay strong and take care of you!
Liked by Colleen Young, Connect Director, Scott, Volunteer Mentor
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My husband hasn’t talked for years and is living in a memory care unit. The staff are excellent and I visit daily. Life is so lonely 😢
Welcome to Connect, @julesa. I think @dianajane and @hopeful33250 will also be interested in joining this discussion.
As an FYI, we have a few discussions related to aphasia elsewhere. But I'm really glad that you started this discussion for caregivers.
– Let's "Talk" About Aphasia https://connect.mayoclinic.org/discussion/june-is-national-aphasia-month/
– Brain Tumors and Aphasia https://connect.mayoclinic.org/discussion/brain-tumors-and-aphasia/
– Agraphia and Anomia https://connect.mayoclinic.org/discussion/agraphiaanomia/
Jules, your husband was so young when diagnosed and still is. I'm sure this is not how you imagined your future together. What thoughts might you have to share about mourning loss of what you thought was to be (if you don't mind my asking)?
@colleenyoung I am interested in this discussion. Thanks for including me. My husband's neurologist & neuropsychologist were very thorough. Testing went on and on. Brain tumor was not in the diagnosis. His first symptom was the loss of ability to express himself. Frontotemporal dementia is specific cause of this cognitive impairment eventually in perception, judgement and memory. It's an ugly disease to be sure.
It’s a long journey with this disease that Mayo said is rare. I recently joined a support group through Mayo which I find helpful. I feel I won’t be looking forward to retirement as I won’t have him to share it with. My faith is what is keeping me going and taking one day at a time. God has his plan.
Liked by Colleen Young, Connect Director, Scott, Volunteer Mentor, dianajane
@jules, we were in retirement when this was diagnosed. Going into 5th year since diagnosed & had to make one of the hardest decisions to admit to nursing facility. He is been there for 13 days and it is quite a transition for both of us. The non-communication is the worst part…..other aspects of the dementia are coming on rather quick….he is 79yrs old, we've been married 58 yrs. My faith and family have been my salvation. One day at a time, but some days are harder than others.
My prayers for both of you.
Liked by Scott, Volunteer Mentor, dianajane
That is the hard part to think about… I don't know how or when I will be able to have my husband go into memory care. He knows who I am still and I know it will be devastating to him. When he was diagnosed I was led to believe he wouldn't realize what he was losing but he does seem to know and is frustrated. He thinks if he tries harder to talk he will get better. Makes me sad that I can't help him.
He is pretty much totally dependant on me so it will be a huge empty feeling for me to. We were forced into early retirement because of this disease not at all what we had planned!
It’s never easy to take that next step. There was a brand new facility opening up close to me and I knew the lady that was in charge of the memory care unit. I just felt in my heart that it was the right time. God’s blessings !
@julesa Thanks for your prayers. He still knows everyone. 3rd week in Nursing home still wants to go home. Being encouraged that it takes time! Now saying he's going to shoot himself which he had said in the beginning of his illness. Scarry…. Not sleeping or staying in room at night, sleeping in common room in recliner most nights after 3am, has fallen several times, no injuries so far but at home when fell caused gashes in head. Never need stitches. Having 2nd thoughts about him being the there. Apologies for the rambling. I'm trying to take one day At a time.
It takes time. I tried to never tell my husband goodby but since we have a small dog, Suzie, I would just tell him I had to take care of Suzie and I would be back soon. He accepted that. He still mentions going home but is not insistent about it and I just move over it with something else or we have to wait a while. It is too cold, or raining, or any other excuse. He forgets about it soon and we go on. He has been in a care center for almost 2 years and I still never say goodby. Just use the "Suzie care" excuse. Sometimes we have to stretch the truth a little and that is okay.
@rmftucker Thanks for the suggestion. I will never say goodbye again. Don't have a dog, but will think of something. Bless you.
I was wondering if things have settled down for both of you. My husband also had several falls but just scrapes and bruises. His doctor put him on Vitamin D . I’m sure it helps that he use to run marathons and is younger. He has nights were he is up also. The doctor tried Trazadone but that made things worse. Prayers and peace .
Liked by Colleen Young, Connect Director, Scott, Volunteer Mentor, Teresa, Volunteer Mentor
@julesa Has gotten better A little! Is sleeping in bed, seems to settle in at night, watching tv, not falling since took off of2 meds. Things,are looking up but I'm a bit discouraged with the nursing facility. He is left to care for himself and I have found him in bathroom unable to get up from toilet. needs assistance with toileting…lots of laundry every day. I. I take It home. Other things are not right.Having a,patient care meeting Friday.
Wishing you good luck with your patient care meeting this week, @dianajane
Sorry I missed this entire conversation until now.
Strength, courage, and peace!
Liked by dianajane
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