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I feel like start running and not look back!

Caregivers: Dementia | Last Active: Oct 26 2:12pm | Replies (123)

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@jmg60

I don't often have time to catch up here, but this thread really spoke to me. My husband is mid stage Frontal Temporal Dementia with severe aphasia. He has declined rapidly in the last 9 mos. - it's shocking. But that's the nature of the early onset FTD. It progresses rapidly but the person is relatively young and healthy. Like Bruce Willis, one of my husbands' favorite actors, actually. I've been taking care of my husband full time for 3 years now, quit my job, quit volunteering, quit seeing my friends for dinner or a movie, quit travelling to spend the weekend with my grandsons. My husband is going to be 66 in 2 weeks, and had the first signs of aphasia 6 years ago. I am sure there were signs before but he was a quirky engineer and always pretty self absorbed, and it was, I now realize, always a "his way or the highway" relationship. So not surprisingly, he is a really tough guy to care for. He's obnoxious, purposefully uncooperative at times when I really need him to cooperate (think airport) and as he gets more confusion he seems to take it out on me. I have two caregivers that assist 5 mornings a week with showering and grooming, he has lost any sense of personal hygiene and refuses my help. So it thought taking this 6'2", 200 pound uncooperative toddler on a cruise would be a great idea. I did include all our grown kids and spouses, and the two grandsons thinking it would be a great family event. Nope. I was just caregiving, arguing, cajoling, worrying, managing him the whole time. I maybe had an hour with the kids in the pool. But my kids validated me - and we had a group text after - that it is time for their Dad to go to memory care so I can be a friend, not wipe his rear and beg him to let me brush his teeth. Being only 5'2" and 100 pounds doesn't help him take me seriously. He has pushed me and slapped my hands away many many times. Anyway the point is...I have been struggling with this for the last 9 mos. and the guilt, but banish the guilt. I have done my absolute best for 3 years and given up everything important to me, other than him. He isn't getting better, and what is the point of waiting until it get worse? Till he wanders off, really hurts me, touches some little kid at the mall? Tonight at dinner at a local Mexica restaurant he took his straw out of his drink and used it like a spoon to eat refried beans. I am not waiting until it's unbearable. I have a life to live, and he will be safe and cared for and have more activities than I provide as I am paying bills and maintaining his life, our home, etc. I am not letting this disease take out 2 people. Guilt has no place here, I've done all I can and he still needs more. Give yourself the same grace, please. I will visit him and enjoy the fun things, we can walk the dog, go to lunch, I can stay for movie night. But then I will go be me, and he will be respected and cared for and safe. It's going to be hard, I have read posts here that are helping me prepare for the inevitable lonely...but I am already lonely; I am just to tired to notice. Best wishes to you - find a way to get past the guilt and salvage one life. You can do it!

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Replies to "I don't often have time to catch up here, but this thread really spoke to me...."

A friend's husband just died of Parkinson's after 15 months in a nursing home .(Montpelier, VT). She doesn't regret her decision one bit; it kept her sane. She did struggle with guilt when he said he wanted to go home, but she stayed the course and was able to visit him rested and in good spirits leaving the care to the professionals. She is now in the next chapter of being a widow. Yes, she misses him; he was mostly lucid and always knew and loved her, but she knows she did the right thing by placing him in a good facility..for him and for her. These diseases don't just affect the patient. The family is affected too; specifically the spouse. Each one of us has to make a decision. I am leaning toward memory care myself. If my husband's belligerence won't allow me to help him, then I'll have to get someone who can. I will be sad for him, but I will have no guilt.

Hi @jmg60, there is so much truth in what you've posted.
I watched my mom struggle with my dad's dementia. She had two caregivers in the house for a while from an agency, but it was still a nightmare. One caregiver's boyfriend got out of jail, then shot her son. She had borrowed $10 from my mom, paid her back and left with $200 "borrowed" that my mom knew she would never get back. The other woman was good with my father, she disappeared and the police went to my mom's house looking for her. My dad went into a care home. My mom died two years after he did.
We caregivers all have to face the inevitable. There is no shame in it. There are limits to what we personally can do for our loved ones, especially in our later years and with our own health challenges.