Prioritizing relationships

Posted by HomeAlone @msberen, Feb 12 9:01pm

Hello, I am a caregiver to my husband of 26 years. He sustained a TBI 7 years ago and now has Parkinson’s and FrontoTemporal Dementia. He requires 24/7 care. I have been his sole caregiver from day one because there is no one else to do it. I don’t have too many outside relationships because I just don’t have time. The way I see it is that if it interferes with me caring for my husband then it has to go. I’ve had to give up several relationships because they put too much of a demand on my time. Sometimes it felt like I had to choose between the person or my husband. Anyone else deal with this?

Interested in more discussions like this? Go to the Caregivers Support Group.

@HomeAlone: Sorry to hear that but can certainly relate. After being married 25 years and being blessed w/3 children, unfortunately went through a separation in 2011, then divorce.
My former spouse was a good mom & stayed at home for 19 years raising our children.
But in 2011, she made it clear that our son could never live with her. So, by choice, I've been his caretaker, sole GOP & sole agent on his Durable HC POA.
Due the nature of multiple medical issues, his illness is manageable but not curable
Beyond work and trying to be a good dad to my 2 daughters (both of whom got married in the past 18 months -- happy occasions) I've put my personal (relational) life on hold.
With my son, there have been some good times, but many challenging & dark times.
In my case, and maybe yours, choosing to be a caretaker for an ill loved one and attempting to have a "normal" relationship with others (including dating, entering into relationship with the desire to share life with a future spouse or partner) have been mutually exclusive.
I wish you all the best and will keep you in my prayers. ~Jack

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@msberen, the situation you describe is familiar to many (if not all) caregivers. I added your post to the Caregivers in Dementia support group as well. I'm sure you'll get many replies in addition to @jackforsonpatrick's as well as helpful tips on if and how to carve out moments for relationships.

I'm tagging @tsc @IndianaScott @srdatt @lbrockme @dem2301 @janet7 @coping123 to kickstart the conversation.

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Good day, @msberen While I'm sorry to read of your caregiving challenges, I'm glad you found your way here to Mayo Connect's Caregiving group. I'm Scott and I was my wife's caregiver during her 14+ year war with brain cancer, which gave her a ton of dementia-like symptoms so I can sympathise with your comment.

Yes, I gave up a lifetime's worth of things in my life due to caregiving. I, too, had no choice. We lived in a small community, no family willing to help, long-time friends ghosted us, and no real options in our town.

I used to say I knew things changed when I looked at the dust bunnies in our home as 'pets' 🙂 I also had to let laundry pile up, give up ironing altogether, put a ton of my life on the back burner, and fought chronic feelings of isolation. It actually was these feelings that brought me to Connect!

Like you, my wife's care became my number one priority -- after all she had no choice in being sick and I was the only one who could do what she so deeply wanted, which was to have someone love her and care for her. no matter how challenging her symptoms became.

We finally got a prescription for home hospice, which was a wonderful thing for both of us!

Please feel free to ask me any questions you might have. Maybe my experiences will be helpful to you.

Strength, Courage, & Peace

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Hi @msberen, I've been taking care of my husband who was diagnosed with Alzheimer's Disease in 2019. He's still functions somewhat well, and I can leave him on his own for a few hours, but I don't go far from home. I only go out a few times a week, and realize that will change in time, as his condition worsens.
A while ago, a friend tried to "lure" (her word) me away with a trip to an art museum 50 miles away, and I declined. More than a few hours away, or a place too far is out of the question. If I'm out I need to be able to get to him quickly in case there's a problem. He is still able to call me on my mobile phone.
I've had to face that life as I knew it is over, social life is on hold and may never return. I have some contact with friends via texts or emails, but they are relatively few.
Right now I'm grappling with this issue. A stray/neighborhood dog that I've been feeding for the last seven years was taken yesterday by Animal Control. My husband went with me to feed her for the last year and he grew attached to her. Animal Control said I could claim her as owner since I've been taking care of her for over 30 days. Sadly, I must face, that I can't take on a dog who is not trained. He's always asked me about bringing her home, but when I asked him if he wants Lucy today, he said no. I know it wouldn't be prudent to take her care on. He has to be #1 priority.
Are you able to take your husband out at all? Since my husband is still able, a doctor told me to take him out on easy outings so he doesn't get housebound. I'm working on that - maybe more lunches, close to home nothing too far or for too long.
Anyway, I wish you the best and thank you for joining CONNECT.

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Yes, I have a similar situation, which has been going on for nearly nine years now. Family members initially were supportive, but gradually distanced from us, due in part to logistics, but mostly because of discomfort at seeing their mother mentally deteriorating cognitively and memory wise. It's a 24/7 situation for me, as she is unable to respond appropriately to emergency or challenging situations of any kind. She has occasional episodes of tachycardia, dysphasia and panic attacks if I am not near her constantly. We have few friends and our 4 children and numerous grandchildren are too busy to take her for even a few days so can get things done, or so I can go to caregivers support groups. I have started singing and playing gospel music for a couple of nursing homes from time to time, and that helps, and she goes with me. But most of the joy of frequent get togethers with family and friends is lacking. My wife is ok with that, in fact it bothers her to even accompany me to the nursing home visits or church and Bible study. So I am stuck in a no win situation it seems. I don't know what to suggest other than grab some time for yourself and time with friends you have left, when you can.

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