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I read this forum regularly. Even though I never post on here, a lot of you are in my prayers as you go though what you have to in order to provide care for your loved ones, and for your loved ones as well.
I would like to share what it is like from the prospective of the patient. I am disabled, and basically home-bound. My husband takes care of me 24/7 with help from my daughter and son-in-law. I always seem to have a new crisis come up about once a month. I was recently approved for Long Term Care Medicaid (I get too much SSDI to qualify for regular, even though two of us live on it) that provides me with some home care like cleaning, laundry, etc.
I can't speak for everyone, but it is not easy being the one who has to be taken care of. On top of being sick in the first place, there is a lot of guilty feelings because you have to witness the sacrifices of your caregivers. I cannot be left alone so that puts a burden on my family. A few times I have tried to "go it on my own" but something always happened while I was alone and it just made it worse for everyone.
Please know that we appreciate what you do for us and the sacrifices you make! I know we don't show it as much as we should, part of that is because of whatever illnesses we have, but it is also hard to express it. How do you thank someone enough for everything they do for you? What words could ever be enough to convey the gratitude? How can you express the grief over the independence you have lost, and also express the grief and guilt you feel for the sacrifices being made on your behalf?
It is a tough road to travel no matter which side you are on. I know that my family loves me and takes care of me because they do. That said, it is still difficult to feel like a burden, and no matter how much they tell me otherwise, it's still the truth.
I know that caregiving is hard. I raised two kids on my own, one of whom is disabled. She helps to take care of me now, along with her own daughter. I thank God for them every single day, and not a minute goes by that I am not grateful for them.
So on behalf of all of us who are being taken care of with such love and patience no matter what, THANK YOU!!
So many of us are older, and so sooner that we would like, we might be in your position. I've thought about this often.
I think if the cared for person stays cheerful and even tempered it is easier on the caregivers. It sounds as if you are doing everything you can to make life easier for those who are giving you care. You are lucky to be loved.
I'm sure your family treasures that you are still with them, whatever the circumstances and is glad that they are able to do what they can to assist you.
My father is homebound (bedbound, technically) and has been with us for nearly 6 years. He has an aide during the day (husband and I work full time), and then my husband and I every night and all day on the weekends. My mother was in the same situation (they moved in together, after becoming incapacitated within months of one another) - however she passed in 2012. So for the first 4 years we were caring for both of them.
There was no relief when my mother passed, just sadness. While she clearly had medical issues, she was of sound mind and still enjoyed her life - she and dad entertained one another and they watched the tv, listened to music and kept up with their friends by phone and letter. Even with all the work it was to assist her, I would have given anything to bring her back home from the hospital.
As for dad - he's 86, and I hope he makes it (at least!) well into his 90s. I dread the day he's gone - even if it means my husband and I can finally take a vacation. He is one of the nicest and kindest people I've ever known, and the world will be a terribly poorer place when he's left it.
I'm sure your family feels the same towards you. I'm sure they know you wish the situation was different, and that you hadn't had these health challenges. But they love you and want the best for you and are trying to give you that.
Just wanted to thank you so much for this beautiful, meaningful post. I am sure you gave voice to what many folks would like to express if they were in the position to do so.
I cared for my mom who had macular degeneration and alzheimer's. She expressed gratitude every evening before going to sleep, 'thank you for everything you do for me' and would often lament how much of my own life I was giving up.
I told her, as your kids would surely tell you, that after she's gone I know I would give anything to have 5 more minutes with her, and that I am not willing to look back and recall 5 minutes I could have had but didn't.
Mom died late 2012 at 93. I was prescient. I would give anything to have another 5 minutes, not to mention week, month, year ...
Caregiving is tough. Needing to be taken care of is tough. But we loved ones are in it together and would have it no other way.
They're so blessed to have you for their mom.
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