The Covid-19 virus has put the difficulty of my situation in a spotlight. My husband has not been able to attend his daycare group for past 2 months and I doubt that it will be up and running in near future. This was my salvation although 12 hours/week to have to myself was not enough. For past 2 months, I have been fairly good at filling our days with creative activities including yard work (weather permitting) and walking our dog. My husband is ambulatory but needs coaching and direction most of the day. Issues for him using the bathroom have begun to arise which I am not willing to take on for the long term.
We are both in our early 60s - he was diagnosed with Alzheimers 2 years ago - and I've been doing this for 12 years (TBI in 2008). My life is dedicated to his well-being....I'm tired of this and want some semblance of a life. Our children and extended family are not close geographically so to leave for an overnight is practically impossible.
I guess I want to hear that I am not being selfish....
I hope this has helped. There are MANY people who feel this way and if you're worried about it, it means you're not selfish, you're just a REALLY exhausted human being.... Hugs and all the very best to both of you 💕
Your statement: "I guess I want to hear that I am not being selfish" is more than plausible; you have the essence of patience, in addition to the other attributes I listed in the foregoing.
In the immediate future, considering the lockdown from the virus, you may want to see if an agency is allowed to provide a caregiver for assistance in your home at least a couple of times a week for a few hours (or more). For the longer term, I feel that you are justified in looking into assisted living or memory care lodging for him..
For 12 years, 2005 - 2017 my massively handicapped wife (stroke), paralyzed on one side, unable to speak, survived in more or less of a cocoon, although she was most alert, happy, and still entirely with it, despite her handicaps. in 2007 I underwent triple bypass surgery and the doctors told me I could no longer care for her at home unless I was bent on dying soon. She entered a nursing home. I visited every morning and every day for lunch, and hired ladies to sit with her from 4 to 6 PM every day. (She needed more assistance in eating than the attendants were able to provide due to staffing.) Through this arrangement she and I both had enjoyable days, even though frustrating for her and very tiring for me.
May God bless you and provide the peace of mind that you richly deserve.
Grace + peace,
Bob in North Carolina
"My life is dedicated to his well-being..." This can take many forms. Some people prefer and can continue to care for someone in their homes. Some can't. When you can't, this is where a nice MC comes in (some refer to it as AL, which MC is, but it is not just strictly AL and from your description of his abilities, he will more likely need MC.) YOU are still his advocate, his wife, his caring family. YOU ensure he is cared for at the facility without having to manage all the hands-on care. There is still a LOT that needs to be done - in my case it is my mother, not a spouse, but what needs to be done will be similar. There is a LOT to manage, just not having to do everything 24/7 (or less when you have/had day care) and not having to manage the physical care makes a huge difference. It will lessen your stress and allow you to spend more quality time with him rather than being nurse, activity director, supervisor, etc. Quality is always better than quantity!
You can still be dedicated to his well-being, just from a different perspective. Be there for him, visits, outings, etc. It can still mean a good part of your day/week, but ONLY being there for him, not doing all the other work in caring for him!
Although it might be possible to get him in somewhere sooner than later, it likely will be very limited locations, if any at all. For now, research different places, talk to the directors, do virtual tours (some will have them), compare costs, care provided for that cost, amenities, what might incur extra costs, etc. Find the place(s) that best fit your/his needs and financial ability, get more detail, determine availability (now and future), etc. Have a plan and a place for him, prepare for moving, all that good stuff! Then when the coast is clear, you will be ready. Enlist help from family for the move, if you can.
Hopefully you have all the needed documents done already (med directives, POAs, wills, and trusts, etc) If not, an EC atty might be able to assist. They can talk with hubby and determine if he is still capable of signing (we had to update some of the documents done prior for mom after dementia kicked in, and atty determined whether she was capable by talking to her alone.)
I don’t feel like you are selfish. I think you are smart to line things up now before it becomes harder for both of you. You are not abandoning him. You are preparing for his future as well as your own.
You matter every bit as much as he does. So often the caregiver is overlooked and that is a shame. So allow me to offer you a giant hug. Sending a bazillion hugs your way.
Let us know how you you are doing. We care 💗.
There are ALs that have Memory Care attached. You could start DH in the AL and transfer to MC if you find he needs more care than the AL can provide. And I am with u with the toileting. If I was given a choice between bathing (which was not a favorite) or toileting, it would have been bathing. When Mom was in the AL, I told "them" when she needed a change. She was paying 5k a month to live there because of the care she needed.
12 years is a long time to be caring for someone, who is slowly sliding deeper into senescence. It's not pretty and wears us out.
I have a friend ( a man) who took care of his wife who had multiple health issues. He was there 24/7 with almost no help. He finally called it--she was very heavy and was like moving 300 lbs of sand. She didn't understand anything. I don't think she was a 'problem' in that she was wheelchair bound--but she required care to bathe, eat, toilet, etc. He got her into a nice MC facility within 5 minutes from their home.
And she passed away a week later.
Since then, he has been on the go, nonstop, Took a cruise and went to visit as many relatives as he could--until the Covid 19 shutdown. I know he loved his wife, his actions spoke so highly of that---and no, he didn't grieve for much more than a week--I think people who lose loved ones to Alz. grieve a little bit every single day--until when their LO is gone, they're exhausted and 'grieved out'.
Although most places are still in lockdown, you can begin the process of getting a placement for your hubby.
You will be stronger and better rested after he is placed in care, and will still be a huge part of your life.
Not that it will be easy, it won't be---but in the end..it's going to have to happen. I'm 63 and tired all the time, I couldn't care for someone at this stage of my life. (Recovering from cancer).
It's OK to take care of yourself--esp when there is no one taking care of you.
As has been said, contact a home health agency for in-home help in the meantime. At the very least, get respite care for your rest.
Take care.
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