"You're not the only one dealing with issues!"

Posted by rxw1853 @rxw1853, Jul 3, 2023

In early 2022 I left a multi-decade professional job to become a full-time caregiver for my wife, who has moderate dementia, psychosis, severe gait and balance problems, and has had many falls - the worst of which resulted in a skull fracture. We are in our mid-to-late 60s. She is now disabled to the point of being almost bedridden, does not leave our home, and needs help with all activities of daily life. The symptoms progressed rapidly. We have run a seemingly endless gauntlet of CT scans, brain MRIs, brain PET scans, blood draws, over the past two years: no diagnosis yet other than ataxia due to possible cerebellar degeneration.

I've reorganized my life to become my wife's full-time caregiver, working from home while reducing my workload. I help with her needs and handle all grocery shopping, meals, cleaning, laundry, household and appliance repairs, medical appointments, etc. Spare time is very limited.

As a result of these rapid changes in our lives, I have been slow in responding to friends' emails, texts, WhatsApp messages, and calls. Some friends do offer support and express concern once I inform them of my wife's condition. But others have been annoyed, saying that I should be paying more attention to them, that I'm too focused on my own situation - thereby making me feel guilty about being a careless friend. When I provided one person with some details of my wife's condition by way of an explanation for my recent lack of contact, I was scolded "you're not the only one dealing with issues in life", as if I had been too selfish or had a martyr syndrome. Unknowingly, I had hurt this person, and I was taken aback.

I would be grateful for communication tips and stories about how others find time to stay in touch with family members and old friends, without sounding defensive or complaining or making excuses. Many people seem to want to hear only upbeat messages, in my experience. But what if the underlying disease is untreatable or cannot even be diagnosed? How much detail do you provide about the reality of your loved one's condition, medical or diagnostic challenges, and the frustrations and burdens involved?

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

For seven or eight years, I have been living with a wife who has been diagnosed with dementia. She is now 78, and me 90. If I were not so young, being the primary caregiver probably would have already done me in. In the last few years, we have employed experienced caregivers that has helped reduce my burden. However, the experience has not been good, as sometimes, they do not interact with her or respond when she becomes frustrated or seeks attention. We are trying to change from shift caregivers to live-in help for nighttime coverage. I am concerned that something could happen to me, and our dogs do not know how to dial 911. Hard to find live-in help. Frankly, I just finished an Agency interview to find an experienced live-in caregiver. The person presented was not qualified and had limited experience.
Some agencies want to place people and, in my experience, care more about their monetary reward than about the client. I do not know where this journey will take me, but I have learned, as others have, that you and your friend are really the only ones there at the end of the day. Others truly care and love you, but they come first in their own world.

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For seven or eight years, I have been living with a wife who has been diagnosed with dementia. She is now 78, and me 90. If I were not so young, being the primary caregiver probably would have already done me in. In the last few years, we have employed experienced caregivers that has helped reduce my burden. However, the experience has not been good, as sometimes, they do not interact with her or respond when she becomes frustrated or seeks attention. We are trying to change from shift caregivers to live-in help for nighttime coverage. I am concerned that something could happen to me, and our dogs do not know how to dial 911. Hard to find live-in help. Frankly, I just finished an Agency interview to find an experienced live-in caregiver. The person presented was not qualified and had limited experience.
Some agencies want to place people and, in my experience, care more about their monetary reward than about the client. I do not know where this journey will take me, but I have learned, as others have, that you and your friend are really the only ones there at the end of the day. Others truly care and love you, but they come first in their own world.

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@jerryannap Welcome to Mayo Clinic Connect! I love your humorous take on your situation!
Finding appropriate help can be a problem. I entered the link to the search page where you can go through the discussions and find one that fits your needs:
https://connect.mayoclinic.org/group/caregivers-dementia/
You may need to check on all discussion to find the right on. You could start working on the list of discussions while we wait for other members to join this one.

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