He suffered brain damage in 2023 from Hydrocephalus, having refused to see a doctor for 3 months as this advanced. He was also DX with dementia. In hospital 2 weeks, rehab for 7 weeks. 3 months later, in hospital for pneumonia 1 week, 5 weeks in rehab. He refuses to perform his PT, will walk with walker from bed to lift recliner and occasionally to bathroom and from recliner to bedroom for one diaper change and to bed at night. I have an incurable blood cancer, in year 3 of a 3-5 year survival rate. He goes to Respite for 5 days every 8 weeks which gives me a break but as any FT lone caregiver knows, I pay bills, grocery shop, laundry, cook, clean, manage medications, manage home repairs, car maintenance, insurance, lawn care, medical and barber appointments and every other unlisted thing that happens or needs doing to maintain life and home. He’s 84 and I’m 82. I have Medical and Legal POA but I can’t wait until I’m incapacitated to get him into Care. He’s much more alert in our home setting but not so happy in Respite so I struggle with my conscience as to when to get him a Medicaid bed. I am trying different facilities for each Respite hoping to find the right fit for him but I am being urged by friends and family to put him in Care while it breaks my heart to take him out of the only home he’s ever known. I go back and forth in an endless loop of questioning what to do because either choice breaks me. I’m stressed to the max, sleep 3 hours, wake and read 2-3 hours and sometimes get back to sleep but usually not. He sleeps, eats and watches tv 12-13 hours daytime. I am at his beck and call because it’s easier for him to have me do for him and frankly, I would just have to spend as much time and energy cleaning upafter him if he started moving around.🥴I miss him when he’s gone but dread him coming home after Respite. How do you make such a tough decision? How do you weigh your loved one’s comfort and happiness against your own? He doesn’t seem to understand I am terminal because I do so much, including daily walks with my dog and visiting neighbors along the way, then doing all the other things. I climbed up in our flat roof a week ago to saw limbs and branches that were touching our roof. Cut them up for the brush cans. I do what needs doing and he just sees the Energizer Bunny, not the Terminal Cancer patient wearing herself out. I can’t seem to make the decision my friends and family are urging on me because I love this man and hate to remove him from the only home he’s ever known and bought just before we married for “a place to die”. Ugh!
I have never been in your stressful situation, though I took care of my late wife for several years before her passing. Slartibartfast has provided some good advice. Perhaps there will be more. Like you, I am 82. When we get into our 80s, life tends to get harder. I don't see how you do it, being a person with terminal cancer and doing all you do, including sawing limbs and branches. You must have tremendous internal strength. What I would like to offer is this. Both of you must find a living situation where you both will be safe. There are several places in the US that have independent to nursing care. What I mean is that you could find a place that has independent living, and if your husband and/or you declined further, you would be on the "fast track" to be moved either to assisted living or to nursing. Asbury, Presbyterian Senior Living, and Masonic Villages are three organizations that come to mind, and each is wonderful. The reason I mention independent living first is that often it is easier to get into independent living first. However, as suggested by Slartibartfast, if you could get into assisted living first, that would be fine. I do not know where you live, but if you do an internet search on the above and add "assisted living" after each, you should find some information on them. If you cannot do that then try to find a senior citizen center near you that might offer some guidance. I feel really bad for you, but I know you can do this.
Sincerely,
J. Mark Fox
If you'd miss him maybe you both transition into a facility. You'd get to keep your eye on him and have help at the same time. Find one that has a continuum of care and accepts Medicaid. I hope you have a PoA for yourself.
I wish you clarity, wisdom and peace in your heart as you decide.
Very well said.
Sincerely,
J. Mark Fox
Perhaps moving your husband now would be a prudent decision (no guilt!) rather than risk leaving him without your support should he reach a crisis decision point, maybe due to your own health. Thinking and planning now could relieve some stress for you and lead to a better quality of life.
I have an adult son with special needs and one of my fervent desires is to help him settle in his next stage of life while I’m still here to support him in transition. I worry about a crisis change where he might feel scared or abandoned.
Wishing you peace in dealing with your hard decisions.
I can relate so well to your post. I am running out of energy to take care of my husband, but I can't bear the thought of not having him at home with me.
And I'm NOT 82 and I don't have cancer!
Can you hire help at home? A housecleaning service once or twice a month, someone to help prep meals, to do landscape chores, and someone to help with your husband's personal cares?
If you don't have the money for this, does he qualify for Medicaid? That could help pay for a home care provider, allowing him to stay at home, if that is what you wish.