Though we have never lived "high on the hog" and my husband made good money, and mine was so-so. We mis-managed our resources severely over our 34 years together, (second marriage for both). The details do not matter here, other than he believed in maxing out credit cards and then getting another lower interest rate to pay that one off and do it all over again. Now he has severe dementia and I am left with trying to manage a mountain of debt. Yet even now his daily complaints are how I am spending "his" money, demanding to see bank statements, etc. I have turned 8 credit cards over to a debt counseling program and cut up the cards. That is helping, but we still have revolving cards which now I have had to use to pay for things like car and household repairs and sometimes food. I was forced to make a decision to sell our home and now we are preparing to move. That will save us the HOA expense and the rent is lower than our mortgage. I know that the move, once we are in the midst of it, will be very hard on him, but it has been overwhelming for me to manage everything. I signed all documents as his POA, and found our apartment.
Frankly I feel like I am a single mom trying to raise a severely handicapped person, but am dumbfounded that he is so concerned about his money, but cannot remember whether he smoked a cigarette five minutes ago, or that his daughter was here this afternoon. Every day I read posts that give advise like "find a daycare" $75 for a minimum of 4 hours - "you need to use more respite care, especially at night" - $24-35/hour - get out of the house and go for a walk - he cannot be left alone for five minutes - falls, smokes in the house, cigarette burns, or cigarettes left burning - will pee in the yard - on and on - go to a support group - again, a cost of $75. I have received 2 $1000 grants, sounds like a lot, right? At 2-4 hours per respite visit -well you do the math, and the even the Alzheimer's Grant is a one time only. Mine runs out in September - oh and here's the best one yet - "insist that his children help out". He has three and I have three, but there is inky one who offers her time - three hours 2x a month -as long as I can watch her two dogs she will take dad to the home improvement store for 45 minutes. I know this is a rant and part of it is our own fault, but knowing that only makes this harder. Even the money from the sale of the house, (3 years of equity), will not help as I try to get him approved for medi-cal, as I have to divest most of it and use a lot to get into the apartment. So please, when giving advice, please keep in mind that there is a big percentage of us who would love to hire respite care and house cleaners and gardeners and such, but cannot.
I would encourage you to ask a minister for help - if you can find one from a church that runs some kind of community outreach that would be even better. It sounds like you have done a really good job finding resources but care giving tends to shorten our focus to the immediate. The minister may be able to find people who would provide 1-2 hours of respite care 2-3 times a week without charge. You might consider contacting your local EMTs and asking if someone who retired from their service might be willing to provide some free respite care.
Although respite care is an ideal, you can sometimes find "mini-respites". For me, that can be enjoying a cup of coffee while watching the world outside a window; a few minutes reading a good book; or enjoying a favorite dish - anything that lets my mind escape reality for a few minutes. My favorite mini-respite is a long soak in the tub, but that only happens these days in the middle of the night when everyone else is sleeping.
It's like mom and child on the airplane that goes through turbulent weather. The message comes on to put on the oxygen masks. It seems counter-intuitive for them to tell parents to put on their own mask first. But the child will depend on a parent who can still breathe, who is still alive.
If you can't function due to lack of sleep or good nutrition or taking care of your own health needs or need for alone/renewal time, your loved one will have no chance of taking care of themselves.
I know St. Vincent de Paul seems to be able to come up with the way to make it happen when needs are presented to them. I'm not sure how they do that, except through prayer and encouraging people who want to help others to connect up with those who have a need. AND volunteers who have figured out the things to do to make it happen when they decide they DO need to do something. We had a gentleman arrive on the church door step. He came to FL to work for a relative who supposedly had a landscaping business. It turned out HE was to be the business, which had no clients. He needed food for the kids that live in that house who hadn't eaten in 2 days. He wanted help to get back north. 2 women from St. Vincent de Paul came to our church, assessed his needs, and by lunchtime, he was on a bus back home. And they were helping those kids after he got on the bus.
As we have more and more baby boomer's parents reach their 90s, we will need to have the means in place to offer needed help, not only for the parents, but also to help the baby boomers.
I wish I lived near enough to stay with your husband while you get out of the house. But I know hospice will soon have me doing that for alzheimer patient's caregivers in my area.
Good luck finding the resources you need!!
And I've learned ways to chain link needed new habits to already established old habits, but certain needed habits seem to be beyond me. Heaven help my caregivers when I am beyond being able to do much at all for myself.
It sounds to me like your husband has kept the memory of being provider all those years. Would it be possible or a help to give him something to "take care of" like a throwaway credit card or gift card with a small cash deposit? Nothing that would destroy all you're working on to fix, but something to make him feel vital again? Perhaps that card could be his responsibility to plan the monthly outing or date night. And let him pay for it and keep the spending records for that card in a little notebook. It won't matter to the large scheme of your budget worries, but it might mean a lot to him.
Re Adult Care services: Keep looking for something along this line. I live in a small rural county in Florida. Nevertheless, there are 4 senior citizen centers, and now many churches are starting services during the day. All the centers are managed by the one woman who had the vision to start the first one many years ago. I get tired just looking at their calendar of all the activities going on all over the place. You walk in and you could see elders doing puzzles, talking together on the couch, painting, in a class, eating their sack lunch, someone pIunking out an old tune on an upright piano.
I just attended a volunteer organizational meeting at Hospice. I was amazed that they do so much for alzheimer patients and their caregivers, even though there isn't an end-of-life-diagnosis. Somehow, we need to get you hooked up with services to meet your needs. Is your husband the only one with this problem? I'd be looking for support groups, and if there truly isn't affodable or free remedies, then perhaps the support group could be instrumental in starting something big.
Straightening out finances is a daunting task even if you have both of you rowing in the same direction on calm seas. While you might not think so, you are making giant strides toward being debt free. Stick to your dollars and mind your pennies.
Having free things to do when I want to spend money I don't have helps me a lot. I've switched to antenna TV and gotten rid of that $182 monthly cable bill. I find 42 channels is more than enough. I'm a frequent swimmer in the community pool. I'm not able to walk like I used to, but I see a couple in their 80s walking around the block hand in hand at sunset. When I used to walk, they would be sitting together on their carport watching the sunset.
What used to bring the two of you joy?
What used to bring just YOU joy?
We are in the same situation. Here’s what I have done. For our credit cards, like you, I contacted a debt consolidation program. They have worked with me to resolve our credit card balances. They will contact the card issuers and negotiate with them in our behalf. We have a set amount withdrawn from our Social Security checks each month. It takes a big chunk out of our meager checks, but in about a year, our credit card debt will hopefully be resolved and we can begin rebuilding our credit. The credit accounts from the cards are closed. Whatever we buy is cash and there’s nothing left over. Trips for fast food are very infrequent and I cannot remember the time we went to a sit-down restaurant. I am also trying to work with another company to work with the bank that holds our mortgage to lower that payment.
Like you, we are truly overwhelmed financially. Even if I cannot pay the entire amount, I try to pay as much as I can on our bills. Yes, I get collection notices and calls and they’re nerve-wracking to say the least. I have no encouraging words for that, but The debt consolidation company also provides an attorney should one of the banks decide to initiate court action. They’ve advised me to block the collection calls and since yesterday, one of the banks has called me 5 times.
As for your husband, keep on your local Medicaid office. I contacted ours through Jobs and Family Services for our County. We don’t qualify for Medicaid as such but I am applying for a Medicaid waiver for help in paying for my bedridden husband’s incontinence supplies.
Good luck. I know exactly how stressful this is. My doctor has added 2 more hypertension medications to my roster. I sleep maybe 1/2 hour a night. I understand.