DH is age 60 in late stage 6: Pretty much totally incontinent, speaks very few words, can only leave him unattended for sixty seconds max (to move the laundry). Still mobile but walks very slow. Has trouble taking direction, like sit down, stand up. I have him in 5 days of daycare so I can keep working. Just added 6 hours on Saturday. I am 56 and need to work financially and for insurance. Very afraid of when he is sick , or me.
I am wearing down, and a snow storm this weekend just added to the stress knowing my commuting for him and me is two hours a day (when roads are good). With my alz/dementia parents, we waited until crisis mode. My sister, who is of state, didn't understand the severity of their situations. I know from the attorney I will be going to Medicaid after spending down assets. I would like to avoid crisis mode. I have a limited support system (few family members here). Licensed in home care in my city runs about $24.00 an hour. If I know it will happen sooner than later, do I go forward know? I will have to give up 1/2 of my retirement when I spend down but could at least have a couple years to rebuild. There is one care facility 15 minutes away that has the best rating by the state and is Medicaid eligible. Thoughts/suggestions?
You have to do what you have to do. I'd visit that one care facility and 'get on the list' if they have one. That insures you a place at the top of the list when the time comes. If it has a high rating by the state AND is Medicaid eligible, it sounds perfect. What you MUST do is ..whatever is necessary for your own health and well being. Especially with your job, ability to rebuild your reserve for retirement. You'll be more rested and therefore more effective in all aspects of your life after he is placed, and it sounds as if he is further along than you think. Don't rely on a family vote to make this decision...it's up to you. Schedule an appointment to meet with the people at this place as soon as you can. Get your ducks in a row. Bless you.
Remember my motto - "Sooner Rather Than Later", and it sounds as if your sooner is coming up on later. No, you don't want to wait until crisis mode - get an appointment with the facility ASAP.
I moved into my Independent Living Villa one year ago, when I didn't need much help, but knew I would soon. The "soon" came quickly. Very quickly. So do not hesitate to go forward NOW.
i agree if y ou are asking its probably time now. you have a good place picked out and can use the 2yrs like you say to rebuild futures. good luck. divvi
I work and make too much money to qualify for Medicaid for my husband because they look at both incomes. Please check that out with your attorney before you begin "spend down" - I can't afford a nursing home.
I am tired. I still work full time and have to do so. I have in-home care Monday through Friday from 7:30 - 5 and I have a volunteer on Saturdays for two hours. And I have five days of respite each month. I use Monday through Friday for the respite to save a week of having to pay the in-home healthcare people. My cost is $2,500 a month, roughly. I figure my savings will last another year or so, but I don't think he will. Then I'll have to rebuild my savings.
I get up at 5:45 each morning - I get myself showered, dressed, make my bed, give the dog her meds, give my husband his meds, give him his cranberry juice, wash his face for him, and talk to him (I don't think he understands what I say - I know he doesn't know who I am, other than I am his lifeline) He can't talk. He is the equivalent of a 6 - 9 month old now. On weekends I get him up and dressed and walk him the two steps from his hospital bed to his recliner where he spends his day. During the week, the caregiver does it for me. After work, I prepare our dinner and sit at the table by his bed with both of our plates, giving him a bite, taking a bite of my food, then give him another, etc. - this takes 30 minutes because he chews forever before swallowing - even though I fix only soft foods now. I feed him a snack of applesauce, pudding, yogurt or ice cream sandwich about 8. At ten, I give him his meds, lower his bed and kiss his forehead and tell him "I love you. I'll see you in the morning" and put the TV on the family movies with almost no sound (but he can hear if he wakes up during the night), turn out the lights and go to my bedroom. So, from 10:30 until 11:30, I relax in bed before falling asleep. Then start all over again the next morning.
Just doing this - and no free time - those two hours on Saturday are solidly booked (drug store, bank, and getting my nails done every other Saturday - my one goody I won't give up!)- and two lunch hours are used to buy groceries - I am so tired. Yet, he is home. He doesn't require a lot of time for me to actually care for him - the caregiver feeds him his breakfast, lunch and snacks and makes his bed, etc., and the CNA who comes daily to bathe him and wash his hair and shave him, do most of the work - I have to watch him slowly die a little more each day. I look at him many times and wonder if he is still breathing. Sometimes I can't wake him up, he sleeps so deeply. I hope I can continue to hang on. Some days are so hard. Other days seem easier. It is still a roller coaster. I used to pray for patience. Then I gained "flexibility" and now I pray for strength.
I am fortunate to be able to allow him to stay at home. Very few of us are. Most have to place their spouses before they get to this point. The costs are outrageous for the care for in-home and for nursing homes. We must get some relief through Congress someday. We are the forerunners and need to make certain that those who follow us don't lose everything in caring for their loved ones.
Please don't wait too long to place your spouses. Find the services available from your states senior care agencies. And from Alzheimer's Association. Some have good ones and some don't. Try to go and look at the facilities, and homes that take in AD patients that are less expensive than nursing homes - and some are good and some aren't. Do your homework before you need to use them.
Dog, I hope you find the right place for your husband and don't have to spend down too much. Good luck. Let us know what you find out.
God Bless you and all the others to are working and doing this caregiving at home, no matter, it's brutal, you are so special to do what you do. Arms around,S
dog, why do you say you will have to give up 1/2 of your retirement when you spend down. Is it in a K-plan etc where you can lump it out, or is it in a place where you are not allowed to touch it until you retire? If you are not allowed to lump it out (cash it out.) then Medicaid will not touch it. Also, you do not want to spend down BEFORE you apply for Medicaid, the more you have at application the more they will allow you as the at home spouse to keep as resources. Be careful before you start spending all your assets.
And to your question as to whether now or later at crisis mode. I would vote for NOW. If you are trying to work on a job, have limited family or friend support then it is a given that unless something takes your husband other than Alzheimer you most likely will have to place him and the fact that you are wearing out tells me you should start now.
Jane--I assumed dog meant that by the time she gets hit with taxes for what she's taking out of her retirement account in order to spend down, she will end up with half of what she currently has in her account.
I salute you also, Dog, when I read your account of your day, I don't know how you can keep it up. I would be accessing a good care home before you give out youself, as you can not keep up that pace for long, I wouldn't think. I find I'm worn out coping with my DH full time without having to work a job as well. I don't think our charges are as high for care homes here in Aus. as they are in the US, or I'm hopeing that is the case, as I couldn't afford anything like what you are quoting.
MarilyninMD I doubt that taxes would take half of her retirement, if she does not start spending down before she is suppose to she might be surprised. She would also have the NH expense to deduct from income therefore most likely off setting any tax caused by spending down. What I am trying to say is that she should not spend down at all until he is in a NH already and then wait and see what and how much they tell her to spend down. They will allow her to keep more than she is aware of. If the retirement is not in a K-plan that can be cashed out then it will not be considered at all.
dog, if it was me I would get ready for things to happen before they happen(as much as you can of course) like check into placement now and even put him on a list now because you can always take his name off the list when they call and you are not ready. It would be a lot harder to put his name on the list when it becomes an emergency. The nurse that talked to my mother about my father with dementia told her that it is better to put them in a placement before they actually need it so that they can become use to where they are before they get really bad. I agree with her(up to a point) but only if it is possible, like for instance, if it is financially pheasable.
dog, I can relate to what you're going through. My DH has recently declined at a rapid rate. I think he is probably stage 6. Can't do much and is now having a hard time feeding himself so I'm trying to do it for him. He doesn't like that very much. I have an appointment with his neuro tomorrow. He slept until noon today. I have some help 3 times each week for 4 hours each visit and that does help but if you don't get a good nights rest, it makes everything more difficult.
I have hired my own caregivers for my DH at 10.00/#. Three are CNA's and two have no official certification but are wonderful caregivers. I have 24 hour care for my DH in stage 7. It is expensive and our retirement savings is dwindling but I am so lucky to be able to keep him home.
I waited for the crisis. I don't recommend that anyone else do that. I was so certain that there was no reason I couldn't keep him home and then we had two weeks of sudden rapid downward change followed by a trip to the hospital. I was given a list of nursing homes in the area that would accept both Medicare and Medicaid patents and spent the next two days checking places out. I got lucky. Several of the nursing homes on that list were excellent choices and one had a bed available.
But I don't suggest that anyone else do that.
As for the money, I now wish I had just bit the bullet sooner. I'm in the spend down period. The way you handle this is you apply for Medicaid the day your LO goes into the nursing home so they do the snapshot as of that day. He might last longer than my spend down money, or he might not, but I won't go bankrupt because I put him into a nursing home. There is a floor below which I will not go. That is how the system is supposed to work, but you have to actually do the work in the right order and the right time.
I'm not going to be rich when this is over. I'm not going to be as comfortable as I would have been if he hadn't gotten this miserable disease. But I also am not going to end up dirt poor. I've been dirt poor and I know the difference.
Starling, Absolutely, you tell them, do not start spending until you apply. That way you will end up with more in the long run. Most people start trying to spend down BEFORE applying and that is not the right order and the right time. You are right on target with this. Keep shouting that message to others who are unaware. Maybe they will listen to you since you are now traveling that road. I have tried to tell everyone but since I am not in a spend down mode right now guess they think I don't know.
Jane and Starling, I appreciate your input and you are right on. My medicaid consultant has stressed that to me many times. Do not start to spend down until they are placed and you apply.
Let me run this by....I have added up all the assets and if it were divided between us I would not have enough to keep the maximum amount. We do own our home and I know I can live here but could not sell it if he had to go on medicaid. The problem is I would want to move out of state where the children are. I do not want to own another house but would prefer to rent. I have wondered if it might be a good idea to sell the house now and put the money in a money market account. We do not have an elder law attorney close by and the house is in a Living Trust now. He is 88 and is going downhill and if he gets bedridden I will have to go the NH route.
Bama, I don't know what State you live in but in most States if you had to go on Medicaid long term NH care for your husband if the house in the trust is such that you can sell it now, why could you not sell it if you had to place your husband on Medicaid, can you not sign the home over to yourself? If you can do that then once he is placed and has been qualified and certified for Medicaid NH care you the spouse could sell the house, they will give you a certain amount of time to re-place the home with another home and if it is not spent on another home for you then the money would cause your husband to be disqualified. I would stay away from a money market account, the money would be a countable asset if you had to apply and most likely disqualify you until you spent it down thus loosing the home.
Some States only allow the maximum amount if there is hardship so unless yours is a State that automatically gives the maximum amount just count on the base amount.
Jane, Alabama....I was thinking if it were a countable asset, then I would have my $109,000. As it is I would not have that much. Also I don't want to own another home but would prefer to rent. Home ownership can be expensive and at 83 I don't want the hassle of taking care of repairs and upkeep. I wish I were smarter about financial affairs but that is an area that DH took care of. Like Starling, I have been "dirt poor" and I will survive hopefully. Thank you for all the good advice you have given us. I always look forward to your posts.
Bama Even if you did not have the $109,000 that they would allow you as a resource, with the home you have a home to live in, and if the trust allows you to transfer the home to your name rather than for it to stay in the trust then the home would be yours, would not fall into the estate of your husband and once he passed it would be yours free and clear to sell or whatever, plus you would still have the amount of resources up to the $109,000 that you were allowed to keep. It seems to me that would be a better option for you.
Don't take my advice and run with it though you would want to talk to an elder law attorney first.
As I read these posts, I have to be glad we are considered poor. We have no assets except a small savings account and the house. I got to keep the savings account (had to take his name off of it) and the house is mine, to live in or sell, whatever I wast. Had to take his name off the deed because if I would die first they would take the house for his care. I have my wages and keep $200 of his income to bring me up to what is considered necessary to live on, the minimum amount. Of course what they consider enough to live on is not the same as what it really takes to live on. I have had to use some of the savings since he went into placement. When I was talking with the lawyer when putting this in place she asked me if I was afraid of losing the house. I told her, no, I was afraid I would be allowed to keep it but could not afford the upkeep and taxes, which is pretty much what has happened. I will probably sell it soon and rent something.
Thanks so much for sharing you thoughts and suggestions. I am following up with a few places and will, as well, with my attorney before I do/spend anything.
I am kind of emotional as this used to be my favorite week of the year with my birthday, our anniversary and turkey day. I know I need to accept the loss of my past life and move on.
It can be so overwhelming and your support really makes a difference
dog-holidays are so hurtfull to us all. At least we have memories of happier times. I feel so bad for those with EOAD and their families. They never even had a chance to make the memories.
We have just gone thru the spend down with the Elder Care Attorney for medicaid and applied to enroll in PACE. My husband will be enrolled as of 12/1/10. The financial planning for this step started a year ago - we withdrew part of his retirement last year end and the balance right after the first of the year to minimize taxes by spreading over two tax years. Hopefully, with DH's day care, doctors and prescriptions (doctors and prescriptions are all on site) paid for by medicare & medicaid, I will be able to recover financially somewhat. Hopefully it will reduce some stress because I won't have to take time off work to go the doctor, keep track of prescriptions and refills. They don't take his social security until he needs to go into the nursing home.