Hi everyone,
Firstly, my daughter is posting and holding this account on my behalf (I’m not the most tech-savvy). The title truly says it all, but I’ll try to elaborate:
- My mom passed away June of 2019 after a long hospital stay due to stroke. She was 92. My dad is now 92, and his greatest wish is to stay in his home.
- Up until a few months ago, he could drive, do stairs, and manage living independently. He was at a fall risk, so we set him up with Life Alert. However, 2 falls in August 2020 severely impaired his mobility to the point where walking is almost impossible for him now.
- He stayed in hospital for about a week after these falls, and I managed to get him into respite care very close to home. However, he was absolutely miserable there and became very depressed. All he wanted was to go home. So, honouring his wish, I brought him home.
- In this time, he was catheterized again due to lack of mobility. While he still had decent enough control of his bladder, he felt as though he never completely emptied. This made him get up multiple times during the night. To help his sleep and reduce fall risk, he remains catheterized. However, it constantly leaks.
- He lives in a side split/split level home. We have him on the main level of his home in the den/tv room. He sleeps in one of those lounge chairs that has a mechanism that will lift him up into a standing position. He can’t get into bed anymore. He can barely make it to the kitchen one level up.
- He is totally mentally and cognitively sharp. He knows everything that’s going on. But I know he’s in denial about how far gone his condition is, as he refuses to take the insurance off his car or sell it.
I have fought tooth and nail with LHIN (for Americans, it means Local Health Integrated Network) to try to get my dad the in-home support that he needs. Despite everything I said above, they still deem him “too good” for a nursing home. Frankly, because of COVID, I don’t particularly want him there anyway. He gets 1-1.5 hours a day in the evening...sometimes no one is even scheduled and I have to call to make sure someone does. They will bathe him, get him into his pyjamas, and help to do basic care. I bring his lunch and dinner every day, but he hasn’t gotten himself breakfast the last few days because he can’t get to the kitchen.
I have tried and tried to get in-home nursing care, but they only do 3 hour blocks of time, and he only needs 1 in the morning and 1 at night. He has good coverage ($50,000 a year through pension), but I can’t find anyone who will do anything hourly.
I am scared for what is coming down the road. I know he will become incontinent, and I just can’t bring myself to his diapers (nor would he want me to). He hated respite care in a retirement home, and everyone says that I’m doing the right thing and can’t put him in a nursing home....but are they going to take care of him? No. I am.
He can afford home care, but longevity runs in his genes (almost all his siblings lived past their 90s and his sister lived to almost 102) and he could be like this for years. We are good financially, but we are certainly not wealthy and this would eat up money fast.
Does anyone have any suggestions on how to make his living situation better? Does anyone have any suggestions of things that I could do to help him? I am an only child, and I am so burnt out carrying 99% of this burden by myself, and I just don’t know what to do. My parents and I were so lucky health-wise for so long, and now this has completely rocked my world. Any help would be appreciated.
Thank you so much in advance!
As you observe, you could very well be looking at 10 more years of this.
I am not getting the whole catheter thing. The leaking and such. I think it he is leaking around the catheter it is possibly causing spasms. I would get a good urology workup. Pullups may be a better option than an indwelling catheter.
So sorry. This all sounds very tough.
If Dad is down to a chair and unable to get onto a bed the car may not be much of an issue at all, is it?
And instead of dad sleeping in his lift chair, you could get him a hospital bed that would probably be much more comfortable for him to sleep in.
Now to the fact that you are already "so burnt out". You've been caring for your father in his new condition, for just a few months now, and you are already seeing how difficult it is, and you are getting caregiver burnout. It won't get any easier, so you will have to continue looking into getting in home help for him, or start looking into a nice assisted living facility to place him in. I know you really don't want to do that, but sometimes we just don't have a choice. There are no easy answers, but you need to do what's best for you. Best wishes.
Your dad is still sharp and knows what's going on. He's afraid of the changes he sees coming in the future, probably not too distant future. I don't know if there are support groups for people in his situation who can vent to each other, but maybe there is. Is it possible to get him in to see some sort of therapist (social worker or psychologist) to help him realistically sort through his options for care? He might not be open to that idea, but if he is, it may help him feel less alone.
I'm glad you found this forum as a sounding board, so you can talk about your fears and receive support. Everyone has an opinion and we don't all agree on what the best answer is, but we are all willing to offer what we think might work. I'm glad your daughter was willing to help you post too, you are blessed to have someone to help you like that. She loves you and wants to support you.
My dad found catheter's very uncomfortable. When he was mentally sharp, he realized he had to have one intermittently for one reason or another, but I could always tell it was very uncomfortable. After he declined to the point he was unable to communicate, I could tell he was in intermittent severe pain. My guess was that he was either having bladder spasms from his bladder being too full or he was having another kidney stone. I hated to do it, but I asked the hospice nurse to put a catheter in. Unfortunately, he tugged on it until the urine in his bag was mostly blood (or at least it looked that way) - in my opinion, he became septic from a urinary tract infection following the catheter.
Before that, though, like you, I didn't want to take care of my dad's personal needs (bathing, going to the bathroom, etc.) but gradually it became less uncomfortable for both of us. Actually, I think he was OK with it before I was. Before he passed, he lived with us (I have a very supportive husband) and the last 2 weeks of his life I slept with my phone on so I could see him in his room. If I heard any noise, I would flip the phone face up so I could see what was going on without having to wait for the camera to connect. I'd go from restless sleep to a dead run to the other end of the house to do what I could - usually it involved changing his diaper. He always tried to cooperate as much as he could. He understood that I needed him to hang onto the bed rail and hold himself on his side as much as he could so I could put a clean pad under him, wash him and get him as comfortable as possible. Was it a lot? Yes. Could I have sustained that level of care for very long? I'd like to think so, but realistically speaking, I'm not sure. Even with hired help 4 hours a day, 5 days a week in the evenings, and hospice coming to get him up in the morning, and the flexibility of working from home and having compassionate bosses so I would be as little stressed as possible. Oh, and that was just the last 2 months of his life. We moved to be close to my parents 13 years prior, when they were independent and gradually (as we knew would happen) then needed more and more help. I'm grateful for an understanding husband.
Only you can decide what you can (and are willing to) take on as far as your father's care. Even when you decide what you are willing to do, whether you can actually physically and emotionally do it will remain to be seen. I wish you and your Dad all the best. It's the beginning of a long journey.
Prayers and hugs for both of you.