Since this is for the care partners…and I’m taking care of my dad…I wanted to rant a little in a safe place and maybe see if someone had similar things to say? I’m dealing with an 86 year old man, who I love… but he’s the child I’ve never wanted and sometimes I’d like to just either run away to…I haven’t even thought where…or go and kiss all the Moms and Dads who are good to their kids and make great parents and responsible children. I don’t know how they do it. I don’t know how I do it. And I’m not gonna rave about religion helping…because that’s private, but I will say prayers and blessings, whomever the Good source it comes from, are always welcome help. And hugs…sometimes from people I’d never expect, those have helped too.
But to be with this man for every day now for over two years has been challenging. It started out as me temporarily taking time off of work to heal before injury as a massage therapist, and turned into this…I love my dad. When my mom died in 2010, I promised her I would take care of him; knowing he didn’t want to be in a “home” or an assisted living community, he became my responsibility to care for. I wasn’t sure then that he wouldn’t be able to pursue his life alone, until over a year into it. After that, I firmly committed my life to his preservation, with the caveat that he had to tell me when he was done. And I mean done with the trial of only eating certain foods, the doctors poking at him, etc. I was told his goal was 100 years old. He may not make it that far, but he may.
He’s already 5 yrs old mentally in many ways; not searching beyond the now of something and confused by new things or old things he doesn’t quite recall. But he’s working on his memoirs and doing his best to get it all down. Not all of it is accurate,especially the more current things, but he’s still trying. He’s such a happy, mellow guy. He’s easy to love, hard to take care of because he’s not a complainer, doesn’t say when something is off.
I wonder if someone else could do better, engage him better to get him the best help, but everyone professional says it’s me that’s doing the best job and giving him his best chance at life. So…no pressure.
Thank you to all the parents who stick by their kids and love them just enough to become independent amazing creatures.
Hi AK! I have no real words of wisdom or answers to your dilemma but I can offer prayers to whatever Higher Spiritual Being you believe in for guidance and assistance!
I am married to my husband of 36 years and a 73 year stubborn German stroke patient, who fell off a ladder and broke his back 2 years ago. So can relate in some ways, but not really. He refuses to eat right, take his pills as directed and “do something” fulfilling. Just decided to give up and sit in his chair and do as little as possible, knowing all the while that I take care of my 82 year old mother, as well that can run circles around him. End of that story…
As for you my darling…yes, you are probably the BEST thing for you dad, but you also need some help! YOU need to get away for a bit…even if just dinner with a friend for the night! You are running on physical burnout, as well as emotional burnout, which is NOT good for either of you! Been there done that! Take of yourself or you won’t be able to take care of him or yourself! In order to be the BEST for him you must be the BEST for yourself as well!
Know that you are in my prayers and that God has sent Guardian Angels to watch over you both even if you don’t know they are there. Listen in the quiet of the night, watching the full moon, or in the slightest breeze of the day! They are with you!
Be blessed and keep doing the good work you are doing! Prayers of comfort and peace going up!
Thank you, Cindy. I do take a few hours “off” whenever I can, and now that my dad’s doing nighttime PD, my life can be a bit easier. I do have to find out from the clinic’s social worker what options are available for home care assistance though, as it will be challenging going forward to be always present, as I was hoping to go back to at least part time work. I have a sister in town, but her life is considered more important with her own children and husband and she doesn’t make an effort for her father unless he’s in the hospital and I mean this literally(in the 9 years my mother has been gone, she sees him maybe 6-8 times a year). Once he was out (this December, when he had pneumonia), she pretty much disappeared back to her life and hasn’t seen him more than three times in four months, knowing his condition is less stable than ever before. I thought I could have her at least for emotional support, but she got so distant, that now I just have my very patient boyfriend and occasionally my best friend in Denver.
My sister just last Thursday decided to start inquiring on how to learn to do his PD…however, that training train left the station over a month ago. I told her that she can’t just learn from me and she kinda gave up on that line of questioning. Our PD nurse said she could train her but she would have to be available at least 2 days in a row and wouldn’t be able to do it for at least a month or more because of her current patient work load. So it seems like my sister won’t be helping out anything any time soon.
My only alternate is to ask other people who are on PD still or who have done it, if they could come in to do his exchange and disconnect. And those people I’m talking about, are through a kidney support group we attend every month. They don’t really know us well but it’s my only choice since specialized nurses for this in home care aren’t covered by insurance, or so I was told.
Hi AK2LV,
I’m a social worker. Does your father have Medicare and/or other insurance? Unfortunately, Medicare doesn’t pay extra for a helper for home dialysis. If he has long-term care insurance the home care benefit could cover the cost of a private duty nurse (hopefully trained to do dialysis) who could provide some respite for you. If he qualifies for Medicaid, it may cover home care. Here’s a website that describes that benefit and provides a list of states and their benefits. https://www.payingforseniorcare.com/medicaid-waivers/home-care.html
BTW, although it’s best for someone to be trained by a nurse at a dialysis clinic, I have known people who have trained other family members to help with their dialysis.