On March 29 I noticed my husband wasn't feeling well. He had chills and no appetite. He is 80 years old diagnosed with Alzheimer's in 2019. I called an ambulance that day and we went to the hospital. Waited around for 8 hours. He was diagnosed with covid. Finally after the 8 hours he went up to a room. Next day when I went back I was told he also had pneumonia. He is also asthmatic. He was very well taken care of. After a couple of days of going to see him I also got covid. I couldn't go see him for the 2 weeks that he remained in the hospital. I insisted he go to rehabilitation after his discharge. After his discharge to the nursing home my sister helped me out by going there to bring clothes and whatever he needed. I finally was able to visit after I had a negative covid test. It has been heartbreaking because his dementia seems worse. He is supposed to be there for 30 days before coming home. I am torn between leaving him there permanently or bringing him home. He would have to be on Medicaid in order to stay there. We live in N.Y. Don't know what to do.
In your husband's case, I'd vote for him staying where he is. You don't know yet how bad his dementia is because you and doctors haven't had enough time to observe and evaluate him. If he's where he is getting good care, that's a plus and saves you from having to figure out how to care for him at home now that his health has declined from Covid. Also, any change in his routine may cause his further decline that you're not trained or prepared to deal with.
I'm very sorry that this has happened to your husband, and I hope you are feeling better.
Hiring aids through an agency is very expensive and most require a 30-hr weekly minimum but they do the background checks, provide subs, have accountability for problems with aids, and take care of the payroll reporting.
If you privately hire you will be juggling hiring and firing, need to do the payroll reporting, and lose your in-home privacy.
If you try to do it alone, you will soon burn out from no social life and the exhaustion of his ever increasing needs.
There is no perfect solution in your situation. Only you can decide what you think you can pull-off. You should consult with an elder law attorney or Medicaid Planner for your state of residence to see what it would take for him to qualify. It does not include impoverishing the community spouse.
If you do facility care, make sure they accept Medicaid. He can go in on private pay and then when he's close to running out of money, you apply for Medicaid. He stays where he's at. My MIL was in an excellent LTC facility on Medicaid for 7 years. She got better care than we could ever provide her in our home.
Caregiving has to happen on the caregiver's terms or else they will burn out. I wish you wisdom and peace in your heart as you decide.
nursing home. He can't fend for himself to call an aide if he has to use the bathroom.
When he comes home he will get an aide and a walker but it will still be alot to deal
with. Thank you.
Best wishes
A certain percentage develop Long Covid lasting 1-3 years but many have had it longer. Data from the same family (MERS -transmitted through camels, and SARS1) shows some people still suffer from blood clotting, new onset/worsening type 1 & 2 diabetes, lung scarring, heart rate disturbances upon changing positions, blood pressure, brain fog, autoimmune disorders, connective tissue disorders, extreme fatigue and cognitive decline 20 years later.
Some people w no psychiatric history get new onset psychosis w/in a year of infection, becoming paranoid and delusional. People (including drs) are unaware it's a risk and don't connect it to covid. We don't know if this is permanent but meds do help.
We know these things are not from the vaccine bc they happened prior to vaccines being available and also happened with MERS and SARS1.
If I were you, I would not take my husband home. Even without covid complications (which we don't know if everyone gets), his condition will only deteriorate. You say he will have an aide. What if they call off? Will this aide(s) be available 24/7 or just a few hours a day? Where he is, they can handle him more safely than you can and you can visit him often. Perhaps he can go to a different facility that is better staffed. Chances are no matter where he is he will end up using adult briefs to make things easier on everyone and cut down on falls.
Get a good air purifying filter that can stay in his room, leave it on and change the filter every 3 months. For outbreaks use n95 masks. It's also good to open windows and use fans to drag air outside. People will say you don't have to but imo it's crazy not to, as each infection's damage is cumulative. It's also not just for covid, lots of people are refusing vaccines and basic safety and carrying diseases around with them.
This is a sad thing to have to make decisions on but your husband is lucky to have someone who cares enough to be concerned for him. See an atty to find out how to protect yourself financially. You can still live at home while he is on LTC Medicaid if necessary. They won't impoverish you.
He will get the care he needs there.
This is not the greatest option but the best possible one unless you can afford 24/7 care at home, which I doubt .
At least he will be safe and cared for. I hope his ordeal ends soon.
get discharged this Saturday. He was only there for rehab and they are insisting he is ready
to come home. I am seeing an elder care lawyer next week for a consultation for
Medicaid for him. I hope it goes well because there are stairs leading up to my
apartment that I fell down twice all ready. I sprained my ankle the first time second
time fell hard on my tailbone. Very painful all along with taking care of my husband at
the time. They don't get it at the rehab.
What if you and your husband move into an assisted living apartment together?
My only concern with that is that he might require more care than they can provide in assisted living. Although you can have an aide come in from outside, just as you would at home, to provide more help.
DIY caregiving might work with the help of this book:
The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself Paperback – September 5, 2017
by Linda Abbit (Author)
https://www.amazon.com/Conscious-Caregiver-Mindful-Approach-Yourself/dp/1440597731/
In regards to qualifying for Medicaid, laws probably differ in various states, I believe in Ohio you have to spend a certain amount of your $ for self pay (spouse gets to keep something, half maybe?), and the spouse gets to live in the house so the house doesn't have to be sold to qualify for Medicaid. An appointment with a lawyer would be helpful for the financial things.
I've had the belief for awhile now, (we're still kind of young and play music in assisted living/nursing homes so we spend a lot of time there) -- if I had to place my husband in a nursing home because I absolutely could not care for him, I would pack a backpack and spend as much of every day with him as possible. To be honest, for some patients, a calm home situation would be better than being in a nursing home in a dementia unit.
But, it takes so much out of a care giver -- more than they can bear, sometimes.
Two other possible resources -- Ohio has a Dept of Aging, so your state might have one as well, that may provide some answers.
And you might check into hospice. My mom had dementia, and my sister cared for her in her home, mom qualified for hospice but lived a another year at least -- hospice doesn't always mean death is imminent, I guess. Hospice provided some assistance in the home with bathing and some other things. Worth checking out, anyway.
It's a very hard decision, praying for you.