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Caregiver for spouse with MCI (Mild cognitive impairment)
Caregivers: Dementia | Last Active: Jul 28, 2020 | Replies (46)Comment receiving replies
Thank you for your response Scott. I feel I am passed the suicidal thoughts. Thank you for your concern.
My husband has experienced two nights of sundowners when he became physical with me. Scared me. I talked to both of his doctors. This is not my husband. I do not know who this man is. Other times he can be so sweet. In the beginning I felt only anger towards him. Now I am feeling empathy. I go back and forth. I feel the doctors need to confront him head on but they seem to gently walk around his diagnosis... never using MCI or dementia... only with me! I understand you feeling you had two wives. In the middle of this, I took my wedding ring and had it redone for the second husband. Now I am on my third. He no longer can fly, play golf and all but one of his friends are gone. One of his old golf buddies takes him to lunch once a month. I am certain it is a one sided conversation.... old war stories from my husband who is a high ranking retired military officer. He is afraid to give up control, I am at times afraid of him physically, we need to move into a smaller home, my husband cannot and will not accept change. I don’t think he is ready for inpatient or even day care.
I guess I am asking for some guidance. When does he stop driving and who is to tell him, why am I expected to cook for him to keep his weight up when I am fighting weight gain, why does the VA not have anything to offer for his condion... “only traumatic brain and alzheimers; he does not fit in any of our groups.” He is 100 per cent disabled. What comes next? No wonder our VA is a one star and we no longer go there. His doctor would not meet with me due to HIPPA?? I told her I only wanted her to listen. That is not breaking HIPPA rules!
I know you do not have answers for me, Scott. I have to figure this out myself but it sure feels good putting it out there.
His SCA was the day after he turned 57. I was 55. We were fortunate in that we did a lot of traveling with his work and my work. We are fortunate in that we have a secure monthly income. But if he keeps giving money away, we won’t be so secure. I hate him and yet love him for who he was, all at the same time.
Replies to "Thank you for your response Scott. I feel I am passed the suicidal thoughts. Thank you..."
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Hi again @janeejane I agree there are so very many complications when it comes to the daily life of caregivers! Big things, small things, and everything in-between. It is often this aspect of caregiving that goes unnoticed by most non-caregivers if you ask me.
'Putting it out there' is HUGE, janeejane! HUGE! I cannot tell you how often I would talk to myself in the mirror just to hear some things aloud and to just get it out of my insides! It is a large part of what I was seeking when I discovered Connect.
I can only speak from my experiences as a caregiver so these are only my observations and experiences. On driving I told my wife our insurance would not cover her unless she took a driving test that (in our case) was administered by Mayo. It was electronic and she failed. Her doctor was the one to give her the news and she accepted it. It was incredibly sad, but necessary. In my MIL's case they waited far too long and someone saw her driving on the sidewalk rather than the street and called the cops -- thankfully!
Food was an issue for my wife and I as well. In her case she only ate one meal -- broiled chicken breast, steamed veggies, and white rice. Every day -- for over 14 years! I had the same trouble with trying to get her to eat more and I needed to eat less (still do)! I would give us equal portions and then keep a small bag under my napkin into which I slipped half my food as I could. Ate those leftovers for my breakfast the next day. Ahh, the things we do for love!
I would strongly encourage you to try and get your husband to sign a HIPPA form for you! I convienced my wife to do this first because we wanted her neuro-oncologist to share reports, etc. with her GP. Then we suggested 'while we are at it, just in case we'd ever need it' to add me and our adult children. This was huge as the years went by and especially our adult children were able to get information on thier mother's condition direct from the doctor (so it was exactly what I was hearing) plus it often took the burden off me to have to spend time relaying info I got from the doctors.
My wife was 49 when she got her diagnosis. We, too, were lucky that we did a huge amount together early in our lives and didn't wait for the so called 'golden years' of retirement. We were frequently criticized for doing this, especially by my family, but those are now some of our family's favorite memories and proved we were correct in our choices at that time.
I have not had any experience with the VA, but I recall others have posted here about VA care so hopefully they will chime in here for you too!
I saw my relationship with my wife as if I was living each day through a kaleidoscope. Always changing, never the same from moment to moment, day to day, but always filled with something new, different, sometimes fun, and often challenging!
I send you strength, courage, and peace!