Meet fellow Caregivers - Introduce yourself
Welcome to the Caregivers group on Mayo Clinic Connect.
Caring for someone can be rewarding, but it is also very demanding and can be isolating. Let's use this space to connect with other caregivers, share experiences, talk frankly about the tough stuff without judgement and to provide a virtual shoulder to lean on.
I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Grab a cup of tea, or beverage of you choice, and let's chat. Why not start by introducing yourself?
Interested in more discussions like this? Go to the Caregivers Support Group.
Hi @pattyinal, I add my welcome. I want to introduce you to @debbraw and @annavard. Their husbands also have MCI. Like you, they know exactly the frustrations that changing cognitive abilities bring for both of you.
Patsy, when did you start to notice the changes in your husband?
Yvonne, I have not been through such difficulties with my husband's health.
I am so sorry that you have to face such a heart wrenching time.
My brother, who is 66 years old, extremely sick, a most beautiful, kind man, has been so ill for about 14 years.
As I write this, I am waiting for bad news as he is in intensive care and not doing well. I know the pain of seeing a loved one so ill. Different circumstances, different kind of pain but it helps me to understand your journey, your need of support and prayers. Have you any support close to you... family? neighbors? Please keep us updated.
Ann
Hi @pattyinal - I am so sorry to hear about your husband's diagnosis. I know that when my husband was diagnosed in 2015 it was heart wrenching. Can you share when your husband was diagnosed? Mayo Clinic is one of the few places in the US that has a program to help MCI patients and their partners. Here is a link: https://www.youtube.com/watch?v=0trSH5JnmIw Do you know of it?
We first noticed mild memory loss, missing appointments, meetings etc.? in 2006. At that time he was also diagnosed with severe sleep apnea. He took early retirement in 2007. Neurologist agreed with us that years of oxygen deprivation could possibly have been the initial source of his dementia issues. Since that time, he uses a CPAP every day, but the cognitive decline has continued gradually, until the last couple of years when the memory loss has become more severe. Now, he cannot tell time, cannot do any of the handyman jobs he used to do, struggles to find the word for objects, cannot remember that he already ate, or has not had a bath or brushed his teeth. He does still dress himself, but would wear the same clothes every day, if I didn’t remove them from his closet. He knows that he cannot remember, and usually asks me for answers, but then is often sure I’m mistaken. He knows he is dependent on me, yet is very protective of me and hardly wants me out of his sight. Probably more than you wanted to know, but so far, we make a pretty good team and I certainly know that our difficulties don’t even compare to those of so many others.
Hi @pattyinal - It sounds as if you have been dealing with this for a long time. My heart goes out to you. Just wanted to pass along something I learned recently that may or may not help. Our local hospice will provide help with anyone diagnosed with dementia - it does not mean they are at the end of life. They do it because dementia is progressive - and their services are free. Also, our local Council on Aging (COA) has been a tremendous resource for me in terms of caregiver support. Do you have hospice and/or COA in your area?
Good morning @pattyinal Never too much information in this discussion! Caregiving can be so intensely isolating, at least it was for me, that sharing can be a worthwhile outlet for some of that isolation.
I can fully appreciate your comment regarding your husband not wanting you out of his sight. That was 100% true with my wife. I do believe she would call my name over a hundred times a day when I was not at her bedside. She, too, knew she was dependent on me and I believe (although she never told me so) she was afraid of what would happen to her and her needs if I was not there for her.
Funny story --- rom her hospital bed we had to add at home when she was in home hospice she could see the bathroom in the hall I would use. She would beg me to keep the door ajar so she could see that I was in there. I was out one day grocery shopping and there was an art sale on the sidewalk. I saw a painting that was done in purples (my favorite color). It was abstract blocks and then in the center was a human eye peering out from the blocks. It reminded me of the bathroom door routine so I bought it and hung it on the wall --- in that bathroom above the toilet! It is still there, although I do shut the door these days 🙂 Seeing it all the time helped me keep in mind that so often it was the disease running things in our lives and not her.
Glad to read you see yourself as a good team! Huge help in caregiving, too -- as you know! Good to also read your husband can do some of his daily routine, such as dressing himself. My wife lost that ability pretty early so I went to a rotation of several of here favorites since routine was also incredibly important to her at all times. We even named each outfit -- we had 'pinky', 'flowers', 'greenie', etc. I hold up two and give her the choice, which she liked since it gave her a tiny sense of being in control of something in a life totally out of her control.
I hope your day and week ahead are solid and that the sun is shining wherever you and your husband are!
Strength, courage, and peace!
I agree--never too much information in this discussion. This is my 22nd year as a family caregiver and I am quite isolated. To counter this, I stay in touch with friends via email, Facebook, and attending some events. Getting out lifts my spirits.
Great suggestion, @debbraw I know each hospice organization is different, but the only caveat I would add to this for @pattyinal is to be sure to check with her hospice, insurance, etc. very carefully on any costs on this. In our case my wife's hospice care was only covered after it was officially prescribed by her physician. Then once prescribed be certain your choice is 'in network'.
I only bring this up as a cautionary tale given that I am continuing to pay down what was over $40,000 in uncovered expenses from early on with our hospice.
Being a caregiver is being a caregiver. Your line about some having greater difficulries isnt even an issue. When all of us are caring for those we care about, its just our life. Its on and off hard, rewarding, frustrating, exhausting and so on. When any of us read the weight of care giving in these share pages there is a recognition that we are doing a difficult thing but it is our love for these folks that brings us here. Many care givers have to dig deep to find that love and some are trapped. But, here, we're all in it together. My wife often wss concerned that she was destroying my life. Now I look back and know its probably the finest thing I've ever done.
Hi.. Thanks for letting me join.. Not sure what to say... My husband has brain injury and I think its getting tuff around here... He's up and moving around when he's not sleeping... He's angry to me a lot.. Any advise. ?