I have run into a major dilemma regarding the day care program my husband has been attending over the last two years. Over the last two weeks, it became apparent that he was becoming more agitated there and unable to enjoy the program. He likes to walk quite a bit and was asking to walk more frequently there and staff was accommodating him by accompanying him in a secured area. Unfortunately his walking had increased so much that they just couldn't provide that much one on one and his last day there was Thursday. So now I face the issue of finding either another program for him or hiring in home help. I had jumped through lots of hoops to secure funding for him to attend the day care free of charge and there aren't any other suitable programs in our area which will accept the funding. Several of the local memory care facilities have day stay programs, but do not accept the funding.
I have realized that not all day programs are created equal and in fact many of them really don't cater to people with dementia. The program he attended does have a dementia specific program but their day room isn't secured and he could walk out at any time. Doesn't make sense to me to not have a secure area knowing that people run the risk of elopement.
My DH is not bad enough yet to be placed but the strain of being with him 24/7 is really tough. Not sure what the next step is except for getting some in-home help. Time will tell.
Elaine, Will your funding source pay for an aide? Our day care funding source was the VA and they agreed to pay for an aide for 30 visits per year after I told them I could not keep up with my husband on the days he was not in day care. You could also call the local Alz Assn and ask if they have any grants that would pay for aides.
My husband’s daycare was fairly secure but sometimes he escaped and if an aide took a small group out for a walk, he would refuse to go back in. About 3 months before an opening came up at the LTC facility we had applied to, the day care director asked me to pick him up 15 minutes early in the afternoon because when they unlocked the doors to lead the physically disabled people out, he would sneak past them and dart around the parking lot. I could see that things were deteriorating. Even though I had him on a GPS tracker, he would escape from our home a lot. One reason I placed him was that I was afraid he would get hit by a car.
I wish I could offer better suggestions. This is a tough problem.
The LTC DH is in has volunteers from the university that will come and take him for walks. They are usually students who are taking courses where this volunteering will help them with their education in that field. Also the seniors clubs and church groups volunteer to walk with him. You may try these organizations for help. Also do you have a friend of his that would be willing to take this on? They could go to the a day Care and walk him if that would be allowed. I know where you are with thus because Kevan walks so much that I couldn't keep up with him.
Myrtle, our funding source is through our state's Dept. of Aging and Medicaid. My DH has been in the Community Care program which is designed to keep people at home for as long as possible and out of nursing homes. The only other services this program provides is Homemaker help (laundry, shopping, cleaning) or a Senior Companion. I don't feel I need the Homemaker help, and the Companion help is only for one hour per week. I need at least two-three days per week of at least six hours just to get a breather. If I pay for it privately it may count toward our spenddown for Medicaid. The Adult Day Care was great for me, but I guess not so great for him. I've been trying to preserve the dollars but it seems every time I find a solution, something occurs which complicates it.
I've been trying to stay in our home mainly for DH's sake since it's familiar to him. But lately since he needs reminders about where items are located, I'm thinking maybe staying here really doesn't matter. He'll need cues no matter where he's at. So maybe we'll just sell our home, move into something smaller and use the left over money to supplement his care and survive. I've wanted to downsize for a long time and really would like a one level home. It would be much easier to navigate and possibly easier to maintain. I think it's time for me to think about me.
Hi Elaine, You're in a tough spot. I wish I could offer some practical suggestions. The only way I survived when my husband was at home was that he went to day care. The VA paid for 3 days and I paid for 1. I can see why you would want a house on one level. We moved into the bedroom on our first floor 2 years ago and it made a huge difference as far as navigating.
In our state, paying for patient care definitely counts for the Medicaid spend down. Also, the house is exempt and our state's policy is not to put a lien on it. So here, if you don't need the extra cash to pay for care, it would make sense to protect your assets by buying a more expensive house (not a less expensive one). But if you need to free up the cash, then that would not work. Maybe it would be a good idea to check with your lawyer before you make any moves. I can't believe that in addition to taking care of our spouses, we have to deal with these financial headaches.