It’s a sad time. Dad has mixed dementia (Alzheimers and vascular), and his mental cohesion has been eroding for years. Two weeks ago, he took a turn for the worse and had to be admitted to the hospital against his will. It’s apparent that my mom can no longer, and especially should no longer, care for him. He’s been moved to a memory care facility, but as he needs help with dressing, bathing, and eating, the expense is taking more than 50% of my parents’ income. He’s currently one illness or stroke away from a nursing home, which would be even more expensive. Mom is so worried about the cost, she talked about bringing him back home. That would mean her giving him round-the-clock care and possibly keeping him sedated during his waking hours.
Added to that, Mom wants to move from California to Texas to be closer to my brother and me. The equity in the house will be a big help, but there are other expenses on the horizon, and it will be a minimum of six months before she can put the house on the market, let alone sell it.
Dad is a retired Navy officer and is eligible for Tricare. However, Tricare does not cover memory care or nursing homes. The VA system has facilities, including one an hour away from where they currently live. I have no idea what the waitlist is like, but I suppose it’s substantial. I know that if veteran in question does not live near one of these facilities, the VA pays a stipend for care, but the number my mom’s mentioned is $1700, which is a pittance, not even half of what memory care costs, let alone a nursing home.
Researching the VA site, there are many mentions of eligibility guidelines for geriatric care, but no actual documentation of these guidelines. There are only vague statements of what is available and links to facility websites that make Angelfire homepages look complete and informative.
My brother is currently out in California, and he’s trying to help Mom set up a realistic budget. Mom’s been told that there’s “a guy” who will go through her finances and optimize her application for VA support, but there’s this $1700 ceiling that keeps getting mentioned.
What I need are resources - the actual eligibility guidelines, realistic expectations of what dealing with the VA will be like, and advice for me, my brother, and my mom. All your help is very gratefully accepted.
Thank you for your replies so far. Hello Again, I have not spoken to a social worker as I am on the periphery of this. I have suggested it to my mom several times, but it just doesn’t seem to have clicked for her. It may be that the finance guy who was suggested is a private pay social worker. Does such a thing exist?
seal_cleaner, as my mom hasn’t actually applied for anything yet, it seems a bit early in the process to appeal to their congressman, but I’ll keep it in mind.
DummyGladHands, I’m not sure what role hospice could play. I realize that, ideally, hospice offers care for the chronically ill as well as the terminally ill, but I haven’t seen any hospice organizations which actually do that, especially not for a person with dementia. Dad is frail, and a bout of pneumonia or a medium-sized stroke could carry him off, but he’s not terminal by any means. He could, unfortunately, last years longer. I will repeat your suggestion of getting him on the wait list.
The local VA hospital (and possibly smaller clinics, but I’m not sure) should have a patient advocate, whose stated job is to help patients and their families navigate through the system/their treatment.
Whether or not the patient advocate will in fact be remotely helpful is kind of a big unknown; I have extremely limited experience with the VA but it has not been positive, and the patient advocate I spoke to was just as unhelpful as anyone else. However, that could be a potential reference point; if nothing else they should be able to point you at the eligibility guidelines you’re looking for.
First, I would put a hold on the financial planner thing—is that where the $1700 is going? Much of that info can be obtained from other sources even if it’s piecemeal.
Sounds like your mom needs for you and your brother to take over. She’s probably overwhelmed and having trouble prioritizing, much less following through. I’m in my 60s and know that in this situation I would need help. Right now, I would start a list and call everybody I could think of, documenting the calls. Invaluable if something is needed later and you’ve already made the search. Name, number, who you talked to when and who they referred you to.
I spoke to somebody at Elder Care once and they were very helpful, with sources I could use for other needs. I know the VA has some kind of patients’ advocate though they may not call it that. A psychiatrists recommendation could help facilitate things, too. I’d also call S.S. and Medicare…anybody and everybody.
As far as your mom moving, the first thing would be to see where your father can get the best, least expensive care and what the requirements are, and take it from there, assuming she wants to be nearby. That may very well be in the state they’re already living in. And some people think a Reverse Mortgage is bad (if they’re still making payments) but the cash can be used for what’s needed now.
There are many ways to go about many aspects of this situation; I would start by writing down every single need and question I could think of and things will start to coalesce into manageable piles. And while you’re at it, factor in your mothers present and future needs too, taking care of things now so you all won’t be faced with this again.
If your dad is currently enrolled in the VA system, she can call the social work services office at his VA hospital and give his name and last four of his social and be connected with his assigned social worker.
Each Veteran in the system is assigned a social worker through their primary care clinic. That person is to help him with any outpatient social service/placement issues.
If he should happen to go inpatient, he will have an inpatient social worker to assist with discharge planning.
I’m in TX (not sure it matters), and we went through VA (Veteran’s Assist, not to be confused with the Veteran’s Administration) which is supposed to speed up the process. It still took quite some time before we finally figured out we qualified. Had we went with the Veteran’s Administration, we heard it might take a half a year, or a year or more. Nobody could give us a definite answer.
There is so much personal information you have to share, which includes bank information. 32 pages of private information and forms I had to fill out just for the Veteran’s Assist program, and a dozen or more phone calls, IIRC. They don’t take your word for anything, they want banking statements, and everything verified. It is hell tracking down certain forms. If your dad is on Hospice, he won’t qualify for the Veteran’s Assist, but you’re in good hands with Hospice if he is at that stage. Hospice does have some longer term help if he has six months or less, and if the doctor has determined this amount of time. If he doesn’t qualify for Hospice, other organizations will be able to help you, at no cost to you by either being paid by the VA, your insurance, or through Medicare.
I am going through this exact thing, and have been since Christmas of last year when my mom passed away after taking care of my dad for the last twenty years when he first had a major stroke. Later, he got dementia, and is now in the later stages of Alzheimer’s. Fortunately, my dear mom did a lot of things right with the paper work which allowed us to protect the estate and keep the government and healthcare system from bleeding the entire estate dry. The best advice my mom got from an attorney is to get the bank accounts out of my dad’s name, put them in hers and us kids names, in case something happened to her too. I believe this was also done with the house, not sure, or if it wasn’t, it was protected. All of this is legal, since he was in the mental state he was in. Nursing homes can still bleed your estate dry though until five years have passed if you choose to go with them.
Using Veteran’s Assist, works with Home Instead which sends people to your house to help you with whatever. We qualified for 16 hours of free home health care a week from them. Not much, but every little bit helps. We also have another health care agency that comes by twice a week to help out with bathing, shaving and such. They would come out more, but we prefer to still do most of it, but I do appreciate the help with the baths. I’m amazed at how friendly and professional many of these health care workers are. I’m so grateful for these good people.
I have mixed feelings about all of this though. Just for two days a week this one health agency comes out for about 45 minutes each stay, two times a week, they bill Medicare for about $5,000 a month! They pay these workers about $8.00-$10.00 an hour, they are doing all of the work, and the health care agency takes the rest. It’s a shame they don’t pay these people more, and the owners of these health agencies bilk the government for so much.
What helped with us is that my business pretty much ran itself, so I had the time to devote to it and let dad be with me. And my other brother retired early to help me out. Dad lives with me one month, and my other brother the next. Dad has adjusted well to all of it. I have another younger brother that has done a great deal too, but still has a full-time job. It’s definitely an effort, but I’ve been blessed to have two great brothers that have also stepped up to the plate. Without their help, I honestly think I would have already shot my dad and me. It’s too much for one person to have all of the responsibility, and it will take a toll on you without other family members helping out too. We’ve gotten so used to our situation, it wouldn’t bother us if they all left though, and let us tend to our dad ourselves.
Trust me, when I say it does get better, you and your dad and others will adjust, with or without any of these other organizations help if you have other family members that understand the situation and care.
First, what an awful time for your mom, and a hard time for you. I’m sorry. It’s hard to see family affected by dementia.
One thing to be concerned about is your parents’ joint assets going solely to your dad’s care. Your mom will need money as well, so it’s important to plan for that. Just something (else) to keep in the back of your mind.
I wanted to update this, and recommend not going through Veteran’s Assist or Home Instead after all, but going directly through the Veteran’s Administration. I kept getting letters from Veteran’s Assist, stating the current total on the loan was XXXX amount. I asked them about what loan? I had signed over 40 pages, just got sent another 30 papers to go through, but this time before sending this stuff off too, I inquired more as to what this all meant. They told me in case my dad didn’t qualify, we would have to pay this money out of our own pocket. I told them, perhaps we need to hold up, until we know 100% positive for sure, but I was already under the assumption since they started sending help out, that we did qualify. They said it looked good, but wasn’t totally certain. I have since stopped having them come out and trying to get out of the contract, which the lady at Veteran’s Assist said we could do and seemed to completely understand my situation. That was two weeks ago, they still haven’t send me final confirmation of us getting out of their contract.
Home Instead had roughly 15 different women come out during the three months we used them. We said from the get-go we just wanted one and not a lot of different people coming to our home. They said this wouldn’t be no problem, and we could also get whatever hours we wanted. They did neither.
I have since had a talk with a lady from the Veteran’s Administration. She said to go down and talk to their office in my hometown. I asked them how long would it take to qualify if I just went through their administration instead of Veteran’s Assist. They said four months, which is actually the same time that Veteran’s Assist said they could get us in for. Originally Veteran’s Assist said if we didn’t go through them, it may take one year or two if we went through Veteran’s Administration.
After getting an appointment with our local Veteran’s Administration the very next day, they were not kind in what they had to say about these other places. They said technically these place can legally get away with it, but why deal with three organizations each getting a huge cut in it, to where there’s not as much left for your dad who truly deserves it. By dealing directly through them, there will be enough to actually hire somebody full-time, compared to only 16 hours a week that Veteran’s Assist and Home Instead was going to be giving us.
The only reason I got talked into going through Veteran’s Assist and Home Instead, is because my local doctor recommended them which I trusted at the time. Not sure if it is fact or not, others have said that all of these groups work in cooperation with one another through referrals and commissions.
Google for something like “Your State” Military Veteran’s assistance. In my state we have veteran’s reps, and they will file the paperwork for you. The states fund these reps to keep Vets off of welfare.
I just happen to know that to qualify for geriatric care you will need to have 70% disability. It does not have to be compensable disability.
We are in much the same place as previously, and I am practicing my patience. Dad is doing well in memory care. It’s a small, family-owned facility with about 30 residents. I was out over Thanksgiving and visited. He recognized me as his daughter but did not know my name, and after about 10 minutes, he had lost interest in my mom and me and wandered off. He doesn’t recognize my mom at all, or if he does, he is caught up in a delusion that he’s been married three times, instead of two, and Mom is the woman he’s cheating on Wife #3 with. Mom and I resort to very small, dry jokes about the whole thing.
Here’s what I know: the parents’ estate is in a living trust, which Mom has full control over. Nothing is “officially” in Dad’s name anymore, though I don’t know how the trust’s assets are weighed in comparison to personally owned property.
Mom has taken some serious physical and cognitive hits in the time she spent caring for Dad, but she is coming back. Her short term memory still has some gaps, and I don’t know if it’ll ever come back all the way. She says she feels like she’s been let out of jail. Currently, she is taken up with getting the house ready to sell. She wants out of California and back to Texas. I doubt she’ll have the will or the resources to deal with the VA until after she’s out here and settled in and we start looking at moving Dad.
I’m doing what research I can - not much - and crossing my fingers that everything holds together until she’s out here.
I find myself thinking more and more about how many people have been touched (Touched? Let’s try damaged, mangled, consumed, exhausted, or practically destroyed) by dealing with a loved one with dementia. If I mention what my family’s been through to someone, 95% of the time, that person has their own story of a parent, an in-law, a friend, or someone else in their near orbit who is or has gone through the same thing. It’s a universal experience, and it is so discouraging that there’s so little help out there.
I’m glad you and your mom are able to make jokes even if they are small, phouka, as I’m sure there is no other way to keep from crying. When you said that your father knew you but not your name, I felt so very sad for you. I hope your mother continues to progress and feel that sense of being out of jail. I’m glad she has gotten things somewhat sorted out with regard to finances. All the best to you and your family. If you need someplace to vent or shoulders to cry on, of course, we are here as always.