I may have the beginnings of reaching my ultimate edge as far as caring for my husband. He is in a wheelchair with a severe Neuropathy, mild Parkinson's, and his dementia is getting worse. He constantly loses the remote for the TV from his bedroom. Last night I definitely couldn't find it. I suggested to him that it might have been wrapped up in his depends which he removes and throws them on the floor and I might have thrown it out by accident. I was not accusing him, I was blaming myself. He just blew up and accused me of losing everything. I could not rationalize with him. I never got angry but I was so hurt. I am very careful How I speak to him but now I am just at my wits end.
It seems he gets angry every night when it's time to go to bed (about 10 or 10:30) . I am very tired at this time but I cannot go to bed until he is in bed first. He cannot get himself into the room or bed without my help. So he retaliates and then I have to remind him that he promised he would not get angry about going to bed at that time because he forgets. I have to wait till he is asleep before I turn in because he will call me for different things. (he is thirsty, he needs a diaper change, etc.) I would like to know how to go about placing him in some kind of facility (a nice place) I see and hear Joan Lundon speak of "A Place for Mom" almost every day. Do I just call the number? Is this entirely up to me? How do I go about it and how do I tell my husband that it's time to go somewhere else? I am tired and it's getting harder by the day. I am turning 81 and he is almost 83. I need a break because this is years I am caring for him.
You could consult with a Geriatric Care Manager in your area. Google them. They can help you to select appropriate placement. Or contact the Area Agency on Aging. They will have someone complete an evaluation to determine the level of care that he needs. Then you have documentation to show facilities being considered.
As far as telling him, I wouldn't until you have decided the location and maybe not even then. Find caregiver support, a facility that you consider may have one that you can attend. Placement will be hard on both of you, no question.
If he is hospitalized for any reason you could use that as your opportunity for placement, direct from hospital to facility.
When his care has so much impact on you, it is time. Once placed you can begin to breathe again and get your life back.
Good luck.
The above is the link to the Westchester County AAA's Resource for Seniior Placements. In "Determining Placement" on page I-3, they suggest that many social service agencies can assist you with a needs assessment.
I would start with DH's doctor. Her/his office may have a social worker on staff, or they can refer you to a social service agency (Catholic Charities, for example) that does this sort of work.
My mom lived in Westchester. She was at Atria Woodlands, which has both Independent and Assisted Living. It was lovely. She was briefly at The Fountains (closer to you, in Tuckahoe). It was fine but mom got off on the wrong foot and we couldn't get it put right. Several other family members were there and it was a very good fit for them.
You need to visit all of these places to get a feel for the "culture". It is very much like looking at colleges.
Keep in mind that, in the beginning as he is adjusting, you may need to stay away because it may agitate him and you will feel worse.
Also, I read on your profile that you are "a healthy 80 woman with lots of energy" and so I urge you to consider your own financial security as you make arrangements for your husband. My FIL is burning through his money faster than when my MIL, who had a neurodegenerative illness and needed lots of care, was alive. He may well live to 100 and we have no idea what that's going to look like or whose going to pay for it because we certainly can't afford it.
https://www.newlifestyles.com/directories/view-digital-print-guide
Your husband sounds like someone who might not take to the idea of assisted living, so I would have some support like a family member with you as you discuss it. and I love the idea of making the move right after a hospitalization, although who knows when he might be hospitalized. Do all your research ahead of time and be ready.
I wish you luck and less stress!
To help you get the best suggestions:
- what is your financial situation?
- do you have durable PoA for your husband?
- has he ever had a cognitive eval from his doc?
- has he ever had a UTI or been recently checked for one?
Caregiving is emotionally draining as well as physically. If you have financial means, you can give yourself a break by hiring a reputable in-home service (my family uses Visiting Angels and they are a national organization). Maybe start with a few hours M-F and see how it goes. Maybe request a guy so he can manage your husband's weight and attitude better. This will make things easier while you scope out your options.
In considering a care home for your husband: facilities normally do not publish their costs. You will need to go in person to check them out anyway, but they won't tell you over the phone, they'll have you make an appointment. This is time-consuming and frustrating, but it's how it is.
Many on this sight have had good experiences in private facilities. I've had good experiences with faith-based facilities. Please only consider ones that have a continuum of care, from independent living, to AL to LTC to MC to hospice. This way you will not need to relocate your hubby. And always ask if they take Medicaid. Don't go anywhere that doesn't.
Also, now may be a good time to think about your own downsizing. Maybe you can be on the same campus, in independent living, as your hubby. This is a big thought, but practical and realistic.
Blessings to you and wishing you all the strength you need to move forward. May you find the right place and solutions!