How many caregivers lives get ruined from long term caring for parents or loved ones?

Nowayout · September 23

I wonder how many long term primary caregivers of elderly with ALZ or other issues lives get ruined? Dealing with these issues with little help and no end in sight is soul crushing and full of nervous breakdowns for the caregivers.

tboard · September 23

I spent years caring for my parents. It did change my life and impact my ability to earn a living. Shortly after they passed I started caring for my spouse who has mixed dementia. I am not sure "ruined" is the right word. It is more like the last 12 or 13 years haven't gone as I planned and sometimes I struggle to adjust. I often wonder if I'll die of caregiving while caring for others who die of dementia.

H1235 · September 23

My mom is in a facility, but even then my health and life have been negatively affected. I know it’s not even close to someone caring for their loved one in their home, but it’s still a lot. I never needed anxiety medicine before mom’s diagnosis, I’d never had a panic attack. I used to eat a pretty healthy diet and exercise regularly. Now I’m busy cleaning out moms house, taking her to appointments, visiting once a week (I usually take her to lunch, but she only likes McDonald’s), paying her bills, buying snacks, replacing lost clothing, checking in on her care and dealing with a difficult brother that thinks mom can make her own decisions (and does nothing to help me). I am always in a constant state of worry about something. When I am home I’m trying to keep up with my household chores. I am retired, but have very little time to relax and enjoy hobbies. I don’t even have hobbies, I have never had time in my retirement to develop any. The anxiety has caused high blood pressure and I’ve gained weight and lost strength and stamina from a lack of exercise and poor diet. All of this and mom is in a facility. I can’t even imagine how difficult it must be for those of you that have your loved one living with you.

caregiving daughter · September 23

It's brutal. Obviously, first, for the PWD. For caregivers, dementia wrecks families as it brings to light disfunction among siblings that stems from early childhood. It creates physical and mental stress. It takes you away from your young children. It makes it hard to show up to work consistently.

I am grateful that my mother never understood her illness. I was grateful to see her smile holding a baby doll. I am grateful that I found the strength to make difficult decisions and I think that has changed me as a person for the good.

MN Chickadee · September 23

Yes it can definitely drain the soul out of people, dredge up really bad family dynamics, ruin career goals and earning potential, and wipe out life savings and generational wealth. My entire adult life has been dementia centered, mom was diagnosed when I was in my 20s and lived with it for 15+ years. Now dad has vascular dementia. My life isn't ruined but the dementia journey has had an immeasurable impact on my path, my choices, outcomes, and at times my health. People who haven't lived in our shoes don't get how big a deal it really is.

notequipped · September 23

https://alzconnected.org/discussion/comment/282916#Comment_282916

Pretty much the same except I’m still working. I have a number of years left until I can retire. My daughter is weeks away from having our first grandchild, too.

Shortly before we moved my mom into AL, I started to experience a constant feeling of not being able to breathe deeply enough. It was extremely uncomfortable. I was constantly trying to take a deeper breath or yawn. It’s an anxiety thing. Once we had selected a facility and started moving forward, it completely stopped. It sometimes pops back up briefly during the multiple daily phone calls to help her change the channel.

I have a hard enough time managing my life and all that it entails. Now that Mom is in AL, I can attempt to try to get all of her other ‘stuff’ under control - dealing with their vehicles, house, finances, etc. Just dealing with the finances feels like such an enormous responsibility. Honestly, it’s one that I don’t want. If I could wave a magic wand and have somebody step in and take it over, I would do it in a heartbeat. As an only, there is no one to share any of the responsibility. Trying to pop in for brief visits twice a week.

It’s quite literally exhausting. Add in the people with opinions regarding her care and what she is and isn’t capable of, etc and it makes me want to run away. The slowly simmering resentment is real, too. And probably more than a little unhealthy.

Hats off to all of those providing daily hands on care. I can’t do it.

dayn2nite2 · September 23

I took care of my mom at home at first and then finally she had to be admitted into a facility because I couldn't provide the quality overall care she received there. I blame caregiver stress for the diabetes I still have and the cancer I had in 2023. I am entering year 4 cancer-free, perhaps I will get to year 5, but the shadow of cancer is always with me and I fully expect it to come back in some other form.

Quilting brings calm · September 24

It’s life changing. I retired partially because I could never predict my week. I might get to work all week or I might have to take off to take one of my parents to the doctor, etc. Everything mentioned in the posts above about being a caregiver to a parent in a facility was the same for me times 2 ( both mom and step-dad) for 5 years until their death. My husband was supportive -our marriage was strong but it was still affected. He saw how much of my time it took, how much it affected me mentally, emotionally. How little my siblings helped ( none). How resentful that made me. We lost our son during that time. I suffered two vertebrae fractures and a knee replacement during that time. Vacations were non existent until we finally just took them because I needed the break. The facility staff encouraged it.

The statistics say at least 1/3 of caregivers die before the person they are caring for. Whether it’s due to stress or neglecting their own health.

serena123 · September 24

https://alzconnected.org/discussion/comment/282925#Comment_282925

i can relate to you so much. virtual hugs friend <3

dancsfo · September 25

It's like being in self-imposed prison, if you are the sole caregiver, isn't it? You need to pay attention constantly, and pretty much can't leave PWD alone. I can't even leave for errands without worrying about what's happening. I empathize with every caregiver on this forum, because we all suffer in our different ways.

As @Quilting brings calm said, caregivers can die first. A caregiver in my support group died recently before the PWD, even though the caregiver appeared healthy. I worry about that, not just about me, but for the PWD who can be left adrift. I read about what kills the caregiver - like dementia, it's a slow death from stress, isolation, lack of sleep, etc. I also sense the caregiver becomes less careful and coordinated (may be lack of sleep), so one can get into accidents too.

I think I must look disheveled too — I don't have the time or motivation to properly take care of my appearance or properly grooming. So that's a minor form of having your life ruined, but it's noticeable from strangers who look at you.

How many caregivers lives get ruined from long term caring for parents or loved ones?

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