How many years of caregiving?

[Anonymous]

How long have you done caregiving so far/or have done if you are finished? Do you help just one person or multiple (parents, inlaws)? How much time per week do you spend (if they are living nearby vs. LTC facility)? Do you have help or is it just you doing it? I am trying to figure out what to expect and I am feeling overwhelmed just thinking through the logistics of multiple aging parents/inlaws with no sibling help.

[Anonymous]

We just buried my dad at 87 after a LOOOOONG battle with cancer. We were heavily involved beginning about two years ago when my mom fell down and broke her hip and my dad was unable to care for her. They live on the opposite coast and we have all spent way too much money on plane tickets, and spent a lot of time on the phone with them and each other, handling logistics and problem solving. We are now working on getting my mom into assisted living, and will likely move her near family and then arrange to have at least one of us visit monthly.

My basic issue is that I'm an introvert and I am feeling the kind of tapped out that I felt when I had multiple toddlers. I don't like being on the phone for several hours a day, don't like spending all of my down time visiting people. I am exhausted talking to my kids on the phone, talking to my in laws, talking to my elderly parent, siblings, social services, doctors, etc.

I also find myself falling back into that thing I did when the kids were little -- neglecting my own dental appointments, doctors appointments, etc. because by the time I have done everyone else's appointments, I'm too tired and burnt out to do mine.

I'm concerned because apparently my mother could live another ten years with dementia, and I can't imagine a life in ten years that includes my kids, their spouses, grandchildren, as well as elderly parents requiring care. I feel like I don't have the bandwidth to do all that and work.

I would suggest getting a good therapist now, talking to her or him at least monthly, and having some seriously conversations about boundaries, knowing your limits, making time for yourself, etc.

[Anonymous]

I have been caring for my parent for 3 years. Initially, it was from a distance - the travel and trips to help were exhausting and expensive. Worse than that were the phone calls declaring a crisis that needed immediate attention. I do not have a sibling who can help financially or emotionally so it's all on me. My parent moved into our house during COVID-19 but they weren't bad enough to get the coveted spots in assisted living. It has been an incredible drain on me physically and emotionally. Like another responder mentioned - I'm an introvert - so never getting time to recharge has worn me down. I haven't been able to care for myself which I know is just a time bomb for my health. My parent needs to be moved and we are working on that but financially none of us are in a good place to cover the costs. We have tried in-house care but that has been both expensive and hit and miss added to the fact it causes a lot of distress for my parent. I know that I can't keep this up. I have been working through my emotions with a therapist but honestly, I'm not sure its been much help - just another appointment I need to get to and the frustration at the way it makes me feel at the end of each session makes me wonder if there is a better way to manage this. I will say that after some additional health crisis' last year, I think my parent is being to realize that they need to be someplace else so there is some positive changes on that end.

[Anonymous]

Usually one spouse helps the other. One spouse covers for the other. Or figures it next-step, if you are lucky. When only one spouse is left, that's when adult children really need to step-up. It would seem that, ideally, it could happen sooner but everyone stays in denial until there is a crisis. That seems universal. Maybe it's nature's way of extending the good-enough. Anyway, adult children are usually real late to the reality that they are now the most competent adult in the room and need to take the reins. And risk making Mommy or Daddy mad, in order to keep them safe.

[Anonymous]

15:18 again, 6 years for DH and I. Mostly visiting monthly, from a distance. Family who lived nearby-by each had their own idea of what was needed. I did not fault any of them for their differences. One visited almost daily. One drove right by daily but saw them maybe 2x/mo. But handled a lot of hard, practical tasks. That was their strength. Parents in a very nice AS, then Dementia unit. Two years I moved to the parents town for 2 separate months when mentioned snowbird family members were going to be gone.

[Anonymous]

The denial is usually on the side of the old parents, not the adult children. Parents refuse, deny, until it’s too late and the AC needs to pick up the slack.

[Anonymous]

Anonymous wrote:The denial is usually on the side of the old parents, not the adult children. Parents refuse, deny, until it’s too late and the AC needs to pick up the slack.

This is my experience too.

[Anonymous]

My mom was disabled, so after my dad passed away, she needed help to be mobile the last 8 years of her life, but her mind, sight and hearing was 100%. She turned down a medical procedure to die quickly at the end. I am grateful she made the decision and not me and hope I'll be as strong at the end.

[Anonymous]

I have been at this for almost a decade and here is what I have learned, hope something helps you.

1.It varies so much and it's not even all about how bad and long the decline is, but how they treat you. My dad's decline and illness was very long with many emergencies and hospital visits, but I felt loved and appreciated so I got the warm fuzzies that I could be there for him and he was grateful.

2. FIL and MIL were stressful, but at least they were considerate enough to live in a CCRC so we could visit and know they had a network for emergencies. It was bearable and I was not burned out and they liked where they lived. One died so peacefully in his sleep at the start of his illness-we should all be so lucky. The other opted for hospice over chemo and I would make the same choice for myself. She was actually the nicest she has ever been at the end and I think if anything my husband wished it could have always been that way.

2. Mom has been a terror, highly abusive refusing evaluation, lashing out, exploding at doctors and after enough years I really struggled with depression and passive suicidal thoughts dealing with the toxicity. Plus, no matter how much i did for her I was useless garbage and she complained out me to all. I would never harm myself, but I secretly wished something would happen and me, my husband and kids would all die together because I knew if I was gone she would be abusive to them.

So, I had to have a team for her and step back because I really didn't want to live this way for another year and she wasn't even in my house. I became ill as well which helped rid me of any guilt. It was killing me. I tell you this because you have to pay attention to what is going on with you. People are living much longer and there should be no shame in making sure someone gets decent care from strangers.

[Anonymous]

I have been at it almost 6 years since my mother had a stroke and I am just so over it. She lived with me, tried living with my brother then moved to an assisted living place. She has dementia and is declining but it is still just moving into the moderate stage.

I sacrificed a lot of time and effort that in hindsight I should have spent with my husband and kids. I now have tried to distance myself which is hard when I am the closest sibling (10 min away vs. 8 hours). I get calls from where she lives or from relatives that she is depressed but I can't give up my life anymore as I became anxious and depressed from the stress. Honestly I am giving up and going to do the bare minimum.

[Anonymous]

OP here, thanks for the advice and for sharing your experiences.
I am sorry for all the stress and frustration you guys are dealing with. I wish there was another way. I know my path is likely to be no better. My parents and I have problems getting along normally, I can't imagine how it will be when they are totally reliant on me for everything. They don't have the money for assisted living and I'm an only child. I still have kids at home to take care of too. I thought college was expensive, but it pales in comparison to assisted living costs. And LTC costs can go on for much longer than 4 years.

At least my inlaws have retirement costs covered. Still my husband is their only responsible adult child, so I expect we will need to help them as well. So much for becoming empty nesters. We could have a really overcrowded nest soon.

[Anonymous]

I had about 12 solid years of caregiving 3 aging parents/ils at various degrees of decline. Care ranged from emergency trips to the hospital for all sorts of issues to food shopping weekly to driving 4 hours round trip on a regular basis to check in, shop for various things, and take them to "big" drs. appointments where they wanted a second set of ears. All have passed now (all lived into their 90s), but nobody really prepared me for the marathon it would be - and I had 3 siblings AND wonderful home health aids helping out at the end too!