Meet fellow Caregivers - Introduce yourself

Thankyou indianascott. Husb just started being mean. It helps to hear your touching way to deal with it. So much of your post is how I feel and react to people and my husb. Thanks

Good for you. We've been married almost 58 yrs. I'm in it for the long hall but like the most of us I didn't sign up for this. Primary Progressive Aphasia with Alzheimer's is just as hard on the patient.

My name is Mona and i have been caregiving for 4 years now. Social work before that. I love what i do but many of my clients have serious health problems and just want to die. They feel there is no reasin to stay in such pain or a body that doesnt work anymore.
I try to encourage, smile and give them purpose but I sometimes agree with them and dont know what to say or do. Any suggestions?

Hi, My husband also has PPA and Posterial Cortical Atrophy. It is very challenging to communicate to say the least! He gets frustrated not being able to get the words out and I just try to guess what he means. I encourage him to keep trying but he is saying less and less. I continue to pray for patience for him and for me. Look for the small blessings in each day and let go of the frustrations.. Not easy but we have to keep our sanity somehow!

My name if Clara. I have my husband in a Altzheimers Care Home but the stress when I visit him almost makes me sick. He has been on a downhill slide for at least 10 years. Up until 2 years Ago i was his caregiver..

Hi Remi. Thanks for sharing. I could have written that post word for word. It is so disheartening not being able to understand what he's trying to say and of course he gets angry about it. A long with changes of Alzheimer's he is so miserable. What posterialcorticalAtrophy? And did his PPA come about with stroke? My husb didn't have a stroke. Praying for patience and trust in God's plan for us.....looking forward to chatting again. Diana

Hello @dianajane I am sorry to read of the healthcare challenges you are facing with your husband's situation. It is always a challenge to be a caregiver, but especially when our patient has mental challenges from dementia and related diseases. I am Scott and I was my wife's caregiver during her battle with brain cancer, during which she had multiple dementia-like symptoms. I also was one of the caregivers for my mother in law who had dementia.

We have two adult children and we wanted them to be able to live their lives without having to give up too much for their mom's care. It made caregiving a bit tougher for me, for sure, but did make my wife feel better seeing them be able to accomplish things they wanted to in their lives. It is a fine line to walk and a very difficult situation in caregiving.

I can tell you I fought depression and being anxious during much of my caregiving years for sure! It is impossible not to I believe! Plus it is an incredibly heavy burden to carry! I like to say "Superman and Wonder Woman only exist in the comics. Caregivers can do their best, but it is impossible to be a Super Hero!

What kind of hints and techniques are you interested in? Any particular area of caregiving! Folks here are always very happy to share what they have learned during their caregiving journeys!

Strength, courage, and peace!

Bless your heart. Clara how did you know it was time for the home? We are 4 yrs into diagnosis so a long road ahead of us. Husband cannot find his words. I dont know how to help him communicate his needs. He cant write anymore and pictures dont help. He is frustrated and depressed. Talks about hurting himself. I'll keep you & your husband in my prayers. Looking forward to future chats with you.

Hello @monarae It is nice to e-meet you here, Mona. I am Scott and I am pleased to read your question here! It is a tough one for sure.

I don't have a magic answer, but I know frequently, during the 14+ years my wife battled her brain cancer she asked me the same question in one form or another. It was a bit different in that I was caregiving for my wife and not someone else, but often I would tell her we needed more time to be sure we had talked about everything she wanted me to know, remember, tell others, etc. This often would help her move into a different place for a bit and change her thinking.

Often times I would also just say 'honey, I just don't know why. I guess none of us really know why we have to suffer, especially when it came from nothing we ever did as a person.

As I said no magic answers, but I wish I did! What have you tried that has worked so far?

Strength, courage, and peace!

Bless you and what you do. Difficult to know how to respond with someone wanting to die. It certainly has crossed my mind. At times my husband who has PPA Alzheimer's makes comments like that. I've been able to encourage him somewhat but like you I see the limited quality of life and my attitude changes. Just being a good listener can do most good. The less I comment the better for both of us. If the patient is religious perhaps the fact that we do not have the right to take a life including our own could be mentioned.