My husband (65) was diagnosed with early dementia six years ago. It's hard to assign a stage since his speech was the first thing to be affected early on. He seems to know what's going on, laughs appropriately at amusing comments, etc., but he doesn't speak except for a couple of brief phrases once in awhile. He can read a word or phrase on a sign or in a magazine and say the words he's reading. He's quite physically healthy. We take a daily walk, but he's much slower than he used to be. He initiates actions such as getting himself to the bathroom, but it's anyones guess whether or not he'll actually remove his clothing before he sits down. He clears his place setting most of the time, but there are times when I find his plate/cup/silverware in the trash. He needs help with most of his ADL's, i.e., he'll brush his teeth and shave, but only after I lay everything out for him to see. He'll dress himself properly IF I get him to take his PJ's off and then put them out of his sight...otherwise, he'll sometimes put his day clothes on over them. He can shower if I turn on the water and set the temperature, provide a towel, etc.
My question is, what sort of help can I/will I be able to get for him? We don't have long-term care insurance, and I want to keep him at home in any case. When he becomes unable to ambulate, I won't be able to help him by myself, I don't think, since he's a large man...6' 2" and weighs 220 lbs. I'm not going to be able to afford in-home help without running out of our retirement money.
He's been on Social Security Disability for the past five years, and I "upgraded" him to a Medicare Advantage Plan through Blue Cross, thinking I was getting better coverage than just basic Medicare. As it turns out, very few providers will accept the plan, although it seems that, had I simply left him on basic Medicare, he'd have better services. I'm not sure whether or not I should opt out of the Advantage plan or not.
Does anyone have any advice about that and other options?
I'm sorry I don't have answers for you CADream. Your DH sounds like the progression of his disease is tracking very close to my DH at about the same ages. I used DH's Social Security money to pay for daycare and occasionally a home health aide so I could continue working.
I'd say it was about 1-1/2 year after the stage that you describe (being somewhat confused about what he was supposed to do in the bathroom, having trouble dressing himself, etc.) that his condition had deteriorated to the point that we went through a NH admission process. At the time, DH would also still recognize a few words in a book or magazine. He would also agree with us and appear to carry on a conversation. We eventually realized that he was relying on rote responses, and that he may not have actually understood what we were saying.
By then he was unable to shave himself at all, or do other personal care such as cutting nails. Every family has its own triggers for nursing home care. In our case, the triggers were a combination of events. He would pace constantly, stopped sleeping at night, had flashes of anger/cursing, his day care center refused to continue to care for him, he had wandered once, and he was completely incontinent (he would poop in the shower or on the floor, for example, and might spread it around or would urinate on furniture or the floor).
If you haven't already consulted an elder lawyer, you should do so to find out what assets you are going to be entitled to keep. You mentioned worrying about retirement savings. At some point you may have to decide whether to put your husband in a nursing home. Whether you spend down assets for care to keep him home now or have to put him in a nursing home in the future, you need to know what assets you can keep and how you can continue to pay your own bills. In our case, I was allowed to keep my separate 401k, half of marital assets up to $109K and one car. I could spend down assets to pay joint bills like our mortgage, but the timing of the spend down was critical. Spending down before the nursing home admission just reduced the amount that would eventually be divided. Every state is different, and 401Ks could be treated differently by your state.
After DH qualified for Medicaid, I was able to keep my wages provided they went into a separate checking account. His Social Security check goes to the nursing home, except for $45 for his personal items. If I needed some of his Social Security (and pension, if applicable) for my own living expenses, there is a formula to determine what portion I could keep. It's very complicated, and you don't want to try to get through this yourself.
I do suggest that you accept the possibility that you may not be able to keep your husband home, despite your best intentions. Very few of us have the equipment that a nursing home has for lifting and moving a patient, never mind the special training in Alzheimers' care that a facility can offer. The patients can have a better quality of life with more stimulation and 24-hour care in a facility, than some of us are able to offer in a home setting. Nursing home placement is not a failure of care - it's just a different kind of caregiving.
I am not aware of any Medicare or Medicaid assistance for home health care, although I suspect that there are some supplemental services in light of the government's effort to keep patients home as long as possible. I'd try asking your doctor, local Medicare office, and Alzheimer's Association. Someone else on the bulletin board may also be able to help.
Have you called your local county health care? Some how my In-laws qualified for free respite care. We get six hours a week. It is a blessing and allows me to run errands etc. it just gives me a break. They will help with bathing, light house work for the patients stuff etc. You can also ask your doctors office. We also have Hospice come in once a month. They used to come out but My father in law stayed stable and they quit coming out. They are back again after our last round in the hospital with pnemonia.
Do you have a case worker with the county you live in? Each state county is different.
I hope this gives you ideas!
Charrev :-)
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Live in full time Caregiver for father-in-law in latter stages of Alzheimer's disease and mother-in-law with moderate Dementia.
Do you know what type of dementia it is? If you have the diagnosis, you should know the type of dementia - Alzheimer's or vascular dementia and etc.
I am sorry that your husband has dementia. The perosn with dementia will get worse throughout the course. So slowly he may have trouble walking or even eating later on.
Try Medicaid or plan on it now so you will have good record to apply for it. Medicare A/B is good for health care but it does not provide nursing home or long term care. Only Medicaid does.
I will say that having a diagnosis of dementia does not necessarily give you a diagnosis of the specific type of dementia you might have. Dementia is relatively easy to diagnose since it is nothing more than the actually loss of cognition. This can be measured from MCI (Mild Cognitive Impairment) to sever dementia. The type of dementia (why you lost the cognition and what pattern that loss will take) is much more difficult to diagnose. Dad was misdiagnosed with Alzheimer's. The doctor (GP) was truly unable to determine the type of dementia but put a label on it. In reality he had Vascular Dementia. Mom was diagnosed with Sever Dementia consistent with Alzheimer's by a research facility that specializes in and doing research in early detection of Alzheimer's and other dementia. They did not actually diagnose Alzheimer's but impairment consistent with Alzheimer's... because of the difficulty in diagnosis this form of dementia. Some are even more difficult to diagnose. It is almost impossible to get a specific diagnosis quickly. It is just the nature of the disease... and a great percentage of those quick diagnosis are not necessary accurate. Until there is a simple test such as a blood test for specific dementia this will probably continue to be true.
Sounds like you need home health care. However, this is not like 24/7 home care. The nurses come to your house for bathing your husband and that kind of stuff. You still have to be there for him to watch him. In the end, he will need 24/7 attention and you won't be able to do that. Perhaps that is why in the end, a nursing home is necessary. From what I have seen, I don't think home care is really supported that much by any government program. We are on our own. Medicaid is only for nursing home so this says a lot about it. Even IRS does not take meals or custodial care as tax deductible... This does not mean home care is not necessary.
Actually Medicaid will sometimes pay for in home care. This is something you need to discuss with your doctor, elderly lawyer, and medicaid specialist in your state. PACE, available in some areas, is one of these programs. Some in home care is federally mandated as for those on SSI or AFDC or other federal assistance programs... but much of the determination is made by the state. Hospice, which includes in home care, is also a Medicaid covered benefit in 38 states. So don't rule it out until you check it out
Actually Medicaid will sometimes pay for in home care. This is something you need to discuss with your doctor, elderly lawyer, and medicaid specialist in your state. PACE, available in some areas, is one of these programs. Some in home care is federally mandated as for those on SSI or AFDC or other federal assistance programs... but much of the determination is made by the state. Hospice, which includes in home care, is also a Medicaid covered benefit in 38 states. So don't rule it out until you check it out
Love, deb
Hospice is covered by Medicare A/B anyway. PACE sounds good but it is only limited to certain areas.
The other issue is sometimes a person with dementia needs to go to a memory unit for group care because home care is in an open environment and the community is affected by the person's behaviors. It benefits the person better in the memory unit in order to avoid the confusion the person may have.
It is nice to keep the husband at home as long as you can do it. However, there is a limit and at the end, a nursing home will be needed. MY FIL had been in home care for 5 years and we reached the limit. He was too sick at home and the old house could not provide for his wheelchair if he used it at that time.
Hospice can be covered under Medicare of Medicaid eligibility... and in the end stages it is a good option for keeping a loved one at home. There are other possibilities other than the PACE program. All I was saying is do NOT assume there there is no help for in home care under Medicaid. Check out the possibilities in your area if you want to keep a loved one at home.
Not everybody will end up placing their loved one in a care facility. We have had several here that successfully cared for a loved one at home. They are both viable options. We just need to know our abilities, our loved ones needs, and keep all options open! There is no one size fits all solution
I know there is a big family who can care for their elders by themselves.
I agree that home care is possible if you have enough manpower or money to stay at home. The patient with dementia needs lots of care. I know this family with at least 4 nurses in one generation. But lots of people don't have a big family.
The diagnosis was up in the air for awhile because my husband had a severe concussion many years ago which was felt may have caused the small area of atrophy in the frontal area in his brain seen on MRI five years ago when he began to develop problems. Also, the fact that the rapid loss of his ability to express himself being his first real symptom made a diagnosis difficult in terms of testing him on a mini-mental-status exam.
However, a recent follow-up MRI showed "at least moderate" volume loss in the temporal and bitemporal areas of his brain which his MD felt was "classic" for Alzheimer's dementia.
I doubt if we'd qualify for Medicaid since we own our home and have investment savings. However, since we were both self-employed, and my husband was in the military reserves, we have no pensions from any source. Our sole income comes from our investments and social security which he received early as disability. We're still relatively young, and there's no way our money would last if I were to place him in any sort of care facility, and I have no intention of doing that anyway.
My husband has no other medical conditions or problems, at least at this point, that require any sort of nursing care at home. However, although he's resonably active now, I'm worried about when the time comes that he's confined to a bed and isn't able to get himself up and about, and I won't be strong enough to move him, get him to the shower, etc. Am I correct in assuming that no home medical care is provided for Alzheimer's as far as Medicare or a Medicare Advantage plan unless he's dying?
At that time, if he is bedridden, he may qualify for hospice. However, I am not sure what home hospice offers - do they have caregivers who comes everyday and etc.
For Alzheimer's, you can apply for home hospice and ask the hospice co. if hubby will qualify. Also it does not have to be 6 months because Alzheimer's patient can last a long time and no one knows how long. But you can renew the hospice again in 6 months. Medicare A/B covers hospice. I know hospital hospice is covered. Some hospice facility may need some private payment for staying.
For home hospice, I am sure they can come. When he becomes very sick, you can try this. It does not mean he will be literally dying.
On the other hand, you can also wait and see and don't have to worry so much now...
He can spend down and get medicaid and he is allowed to have one house where you will live. It is not so bad. You can try to talk to an elderly law attorney.
CA... he could possibly have benefits from his reserve service. You will need to check this out through the VA. If he was ever deployed the chances are good... and it also depends on the length of his service.
There is short term care that can be paid for through medicare such as home health. It is prescribed by the doctor if the need arises. This is usually in connection with a medical diagnosis. Dad had home health twice. But this is not a long term solution.
Hospice is not just for the bed ridden. If there is Alzheimer's in the later stages then he qualifies and it might be your best hope. Mom is still ambulatory and she has been on hospice for a year. They supply nurses and aides as needed. Mom gets one shower a week from them and a volunteer one afternoon a week along with her nurse visits. No they are not there 24/7 but it is a help.
The other thing that is a help is a "fall assist" call to paramedics. If your husband should fall and you can not lift him, yet he is not injured or in need of the ER, they will come and help you pick him up.
One thing you might want to do later is to ask his doctor for in home physical therapy. More so for you than for him. The physical therapist can teach you the techniques and supply you with what you need to make transfers easier. It will surprise you what you can do with the proper techniques and a gait belt It had no trouble getting my 6' 185 pound Dad in and out of bed or changing his sheets without even getting him up. It's all in knowing how.
It is good to prepare for the future but please do not worry. Research options, check with his doctor, and call an elder lawyer to find out what you do qualify for and how to handle your monies now.
Thank you all SO much...I will consult with an attorney and check with our local Hospice about how they can help me now and later.
I know, compared to some of you, even though I think my husband is close to a Stage 5-6, "I ain't seen nothin' yet." But, I'm healthy and strong, and I'm determined to keep him here with me. My determination, in part, is due to the example my father set for me when he, with help from a housekeeper/caregiver, managed to keep himself and my mother (who had senile dementia for the last couple of years of her life) in their two-story home until they both died three years ago, two weeks apart, at ages 89 and 92.
Gabriel...no, he has no benefits from his military servive because he was never called into actual service...just did the yearly "summer camps" after the boot camp phase. We had a physical, occupational, and speech therapist come out, but that stopped when it turned out that, while Medicare would have paid 100%, our Medicare "Advantage" plan, wouldn't authorize that sort of therapy for a dementia DX. I'll be getting rid of that plan as soon as I can...
Nina...I'm certainly going to look into Hospice and everything else I can think of to help us/me get through this in the manner he would have chosen and I hope to.
I do believe I would be getting rid of the "Advantage Plan". Dad had in home visits from PT and OT even with his dementia diagnosis. That is until Mom ran them off! She assured us that they "just stopped coming" until I found the latter from them stating they were sorry she was not satisfied and told them not to return. At least her diagnosis explained that one!
Please keep an open mind concerning hour husband's future care. Granddad had a helper. Grandma was probably smaller than your husband. Situations are different. Just know there is no right or wrong... just what we are able to do. You are as important in this situation as your husband is... and you have to take care of yourself to take care of him.
I wonder if you could find an individual that would be willing to help out? Perhaps contact your department on aging or the local Alzheimer's Association.
Glad to hear you'll check with an elder lawyer. You'd get to keep your house since you're living in it, and still quality for Medicaid. The investments would be divided in half and you'd get to keep your half up to the maximum (not sure what it is now, but it was around $109K). You could also be eligible for some of his Social Security money.
I understand your intentions to keep your husband home as long as possible. We had the same intentions. Our kids helped a great deal, especially the youngest who was in high school during Stage 5-6. Take advantage of any family help, or perhaps friends, a church group, or anyone else who can help you like your Dad's caregiver/housekeeper. When it gets worse, trying to do it all yourself is very physically demanding. I found that lack of sleep (DH would not sleep except for intermittent naps and would pace constantly, trying to leave the house) combined with stress inevitably affected my health. Accomplishing tasks like cutting the grass or getting to the grocery store required major planning.
A problem with speech was the first symptom that showed up with my DH too. When I was researching the disease many years ago, I read an article that speech is often the first area of the brain that is impacted with early onset, which is sometimes perceived to be a different form of the disease. Not that it matters much since we end up in the same place. We eventually went through a national research center, and DH's MRI also showed brain loss consistent with Alzheimers. It's always interesting to hear from someone else whose experience with the disease is similar. Every patient is different though, and your experiences along the road could be very different from ours.
In year 2-1/2 of the nursing home (year 10 or so after diagnosis), DH has definitely had a drop-off lately. The disease seems to be moving a little faster since he stopped being able to walk independently a few months ago. It was dangerous for him to walk since he was leaning over from impaired balance and depth perception. He also couldn't sit down without falling, since he would miss the chair. His refusal to sleep meant that he would nap on his feet, and then fall down. DH broke 2-geri chairs within a few days trying to get out of them, but has settled down now. For awhile he didn't know how to use his feet. When the aides would try to lift him, he would swing his feet up into the air instead of putting them on the ground.
He's making less eye contact, and it took him awhile to figure out how to drink through a straw yesterday when we held a drink for him. He still has some days that are better than others. Two weeks ago he even said a sentence that made sense. Hard to believe he's in his late 60s now.
While we all would like to be able to stay at home ourselves or for our loved ones to be able to stay at home, that's not the overriding concern. It isn't about what we all want, it's about what is best for the patient...and that very well may be a NH. Depending on where you live, it might be a good idea to do a little research on what is available, costs, etc in your area so that you have some basis of knowledge if the time comes.
