Many of the folks who post here tell of placing their loved one in assisted care facilities and the like, but that takes money. We are not on Medicaid - don't qualify because we have "too much" income, yet we don't make enough to place him in a decent place when the time comes. I try not to think about where this is going but seem to be unable to stop. I plan to care for him as long as I can, but if his progression follows the same path as many of yours have done, I don't know if I can take it. Any ideas will be appreciated.
Get organized. Very organized. Agencies want info all the time-best to have it at the ready. Paper work in folders. Phone numbers listed, written down. A calander to keep track of stuff, for me-is mandatory to manage the nuttieness now.
My husband has Frontal Temporal dementia-it tends to start earlier and progresses faster. Fear of the unknown on my part had to be dealt with, so I could move forward to be in a better place-mentally and physically as far as caregiving and all the other duties it involves. This is not my first stint as a caregiver-took care of my mother with end stage cancer-that was easier in comparison.
Dementia does not stop. There are plateaus, enjoy that time.
What is your personal support system? Do you have friends or family to chat with? Zoom dementia support groups? They're great, have helped me a lot.
One phrase you will hear a lot (if you haven't already) is: "you need to take care of yourself." I, personally hate it. Because 100% of the time, there is never the "I will/can do this for you." At this point, my down time is in the mornings, as my husband tends to sleep in-so for now that's about all I have.
Not everyone is cut out to be a caregiver. This may not be for you. Time to explore the options now of what is available in your region. Area Agencies on Aging might be a good start.
Call the Alzheimer's association-I've used them twice, and both times the people I spoke with were amazing. Really, really good.
Living in fear is awful. Highly stressful in a very stressful situation. If possible, try to do one small thing, call the bar association, get that information. Cause, not doing anything out of fear, sadness, grief, hopelessness, exhaustion, pain, confusion, has a very bad outcome.
There are a lot of very experienced people here who will have great advice. Keep coming back, there's always something new to learn.
Your fears and anxiety is appropriate to the situation. I would ask if you have considered a few counseling sessions with a licensed social worker in private practice because I think it would be an enormous help to you. Make certain this person has a foundation not just in counseling, but in actual social work which put her in contact with the problems of the aging.
You may need to soon consider placement. I suggest you see an elder law attorney and make certain your "ducks are in a row" and that you have paperwork needed for the future, especially as concerns a POA. You WILL need to negotiate this world and luckily have some funds for an attorney to help you. He/she can let you know how division of assets work, your husband having his portion to go to his care, in a good facility while the funds last, leaving you with your own funds for your own future. There are ways of doing this that must be done NOW, before care. And a good attorney can help you.
There are ways of dealing with this and the first one is a long breathing exercise. Then tell yourself A) not everything has to be handled NOW today. But one thing I CAN handle today is (appointment with attorney?). B) Honest discussion with your own doc about your anxiety. For some a light and low dose anti depressant helps bridge some of the things that have to be handled. C) Know that as you get things as prepared as you can, you will feel comforted and capable. D) Get community. I don't care where or how. Something I personally struggle with. It is tough to put this on family. And if like me you aren't a person of faith you have missing in your life the support of a good faith-based community. Therefore you need to make your own in some way, even if just starting with discussion group on Facebook involving spouses of dementia patients.
There are ways to try to address this. Trust me I know some of what you are going through and know what it is to awaken with head flooded with the same circular thinking of "what ifs". My heart goes out to you. It's a struggle.
I find that structure and routine in our days is best. Meals at regular times. Bedtime always about the same time. A planned rest period for me every afternoon (maybe don't get it every day, but plan anyway). Doctors' appointments first thing in the morning if possible when LO is at his best. Routine means that the caregiver doesn't have to think through every single little ordinary thing in the day. That leaves more brain power to figure out the serious things that come up unexpectedly, like a fall (should we go to the ER? did I mop up all the blood? where is that new tube of antibiotic?).
Building community is difficult when we have to be careful not to get Covid. I've recently posted on a thread about effects of Covid on those with cognitive decline. I've seen it in friends and relatives - downward spiral in dementia definitely accelerated by having Covid (not the vaccine that's causing it, but Covid the disease being the culprit). There are many daycare programs in my area for dementia patients. We don't use them because they don't take precautions to protect people who attend. Those running the programs apparently didn't get the memo that Covid can cause even more decline, or if they did, they don't care (odd, since their mission is to help those with dementia). Online groups are helpful. Family and friends not so much, because if they're not caring for a LO with this disease, they just don't get it. That's why they say, "you have to take care of yourself." I'd rather they not say anything.
Learn it as you live it!
You REALLY need to see an Elder law attorney, one who is familiar with Medicaid regs in your state.
There are two kinds of Medicaid--the kind that is Medical insurance and and the kind that covers long term care.
Your assets and income can be divided so that your husband qualifies and you are not impoverished.
If you have to place yoru husband and he has to go on Medicaid, they aren't going to take your home or all of your income. They're going to take some but you (as the spouse) will be able to stay in your home and will be left with enough to live on.
Let's not put the wagon on front of the horse here though. You may never even have to place your husband. Homecare may be an option for you both.
Even if you do have to place him and the AL isn't a top-shelf place his life can still be made decent there by you and others.
Worrying yourself about what hasn't happened or may not even happen won't help anything.
Make sure you have your affairs in order like POA, a Living Will, and a Last Will and Testament.
It could be an option for both you and your husband to move to an AL apartment now. Sell your home and both of you use the proceeds for AL.
There are many very nice AL facilities that allow spouses to live together even when one doesn't need care. Also, these places usually have a policy where it's cash pay for a year or two and then Medicaid paying. They let you stay though.
I worked in a very high-end AL facility. Our policy was a two-year cash pay first then Medicaid was accepted. Spouses lived together too.
For sure they were greedy money-grubbers but it was still a nice place.
There's no such thing as an AL or a NH in the United States that aren't greedy money-grubbers. Some of them let couples come and they are places.
Do a little research and just look around.