Thank you to all that have replied and offered hugs and suggestions. Keep those prays and hugs coming; we both need them!
I am able to get time away for errands and appointments, including the much needed hair and nails! Family and friends are providing many meals or DoorDash gift cards, which has been a tremendous help and I have a twice a month cleaning lady. It is funny what my husband now wants to eat; he will request things he rarely ate before, or reject things he always ate. While I am coming to rehab for a good part of the day, I am not doing the physical work for him, so that is nice. Typing this as he naps in the recliner before his next therapy session and will leave to run errands when they take him.
As he is in a diaper most of the time, he is not comfortable with family or friends dealing with that, so I try to schedule my leave time around his toileting needs as best I can. This is where a paid caregiver would be best, and I have the name and have spoken to 2 that I know have worked for families we know long term. We have made the decision to hold off on paying for help at this time as neither of us have worked since the beginning of June. Once we know for sure that my husband is going to get money from his disability policy, we will revisit home help.
Six years ago we downsized to a 3 story town home with the master on the top floor and no elevator. Several friends thought we were crazy, but we said, we are young and able, the stairs didn’t bother us. If at any time we couldn’t handle the stairs, we would move at that time. Neither one of us thought about illness vs. getting too old and frail to manage. Currently my husband is in the guest bedroom on the bottom/garage level. He is set up with a baby monitor for my ease, although every time I wake up during the night, which has been often for years, I check the monitor to see if he is asleep or up playing on his phone. He does have a rental hospital bed that I hate as it is basic, but that is what Medicare would pay for. He will call or text me if he needs a change as I keep the monitor sound off due to his snoring! His room is set up well and he has everything he needs in there.
Recently I got a recliner for the room to make him get out of bed; previously he had vetoed the purchase, but my daughter talked him into it. It came Saturday and he was admitted to rehab on Monday so it hasn’t gotten much use. His core strength is very weak, so he get uncomfortable sitting up for too long, and complains his butt hurt! OT and PT are making him work here, so hopefully he will make some progress and move to outpatient therapy once discharged.
I also feel I have a strong family/friend support group, although I hate to dump on them too much. One is our closest friend who lost her husband 4 years ago after a long illness, but different. My husband and I were with her every step with her husband, so she in turn is there for me. I think we are managing as well as can be expected now, I just worry as his symptoms progress. This previous healthy man now have medical issues, other than the cancer, that he never had before; high blood pressure, diabetes (due to the steroids,) blood clot, and wacky labs due to the chemo and tumor.
My husband will tell people I do everything for him and I am a godsent, but then will make a demand of me that isn’t rational and get angry when I would comply. I know that is the tumor talking, so I try to be patient, but if I am tired or frustrated, I might snap. He has mentioned a few times that he is here in rehab to give me a break, while we keep telling him it is to get him stronger. Yes, it is a perk with him here that I have a break, but it isn’t the reason. While he won’t say it, I have wondered if he thinks we have sent him away; he seems a bit sad, but says everything is fine. Again, his affect may be the tumor, not his true feeling, but it is hard to tell.
We are a ways away from hospice at this time. We have spoken to the social workers when he was last hospitalized. After his next MRI we hopefully will have more information.
My biggest complaint, and I have spoken to her about this is, my SIL (husband’s sister.) She constantly wants to know what is going on, how he is doing, will he get better, etc… Family members get updates, but she will ask questions that have no answer at this time. She acts so sad, and how terrible this is for her. They are very close as she is 9 years older, and he lost his mother when he was 11, so she is a mother figure to him. We are all very close, but I am tired of her sadness; the kids and I come first, like the Ring Theory article someone posted years ago on the Caring for Parent thread.
Caregiving is hard. Agree with the suggestions to find paid help - and sometimes it takes several caregivers until you find the right one/right company.
) You do the best you can with the day you have, put it away at night and wake up and try again.