As the time for our family cruise nears I was near panicsville. I thought my knee fracture was a sign not to go. Today Bill was up in a chair. With prompting he is feeding himself. He will walk short distances with his aide. The blue color is gone. I guess it's a go. Wasn't the inauguration wonderful! Loved our new president's speech.
Bluedaze, it is a sign, to go on that cruise with family. i have done many family vacations and its one thing i truly miss now. make those memories and dont remiss about Bill. he will be fine and in good care. . Divvi
I will never understand this damned disease. I was terrified to go on our family cruise with Bill so ill. He is making a comeback. Today he was up and walking-well shuffling. His color was good and his gorgeous blue eyes clear. He made eye contact and I saw a flicker of him in there. I got a butterfly wisp of a kiss. I don't think he understood who I am. I still feel like I betrayed him with placement after seeing what you all are doing for your loved ones. I am beginning to forget the rages and very dangerous acts we endured. It is getting harder. March 15 will be our 50th anniversary.
I am so sorry all of you are going through the end stage. I know that one day DH and I will be going through it also. I pray I will be as loving and as gracious as you folks seem. He's doing quite well now. Doesn't recall anything really. He tries to read the paper but I don't think he retains much if anything. It's heart breaking to see the demise.
Seems like that is the torturous part of this disease, Bluedaze. you finally get to where you accept whats coming and prepare yourself as best as possible emotionally, then they rebound and set you up for it all over again later..on the other hand, i am glad hes doing so much better! hey, with reference to those of us caring at home -i have been envious of those of you who have taken the step to placement many many times- if i had LT insur who knows. thing may be very different. its not easy by any means keeping them home and doing this for years without respite or family to offer help. it wears and tears you mentally down. so be grateful you have him already cared for in a good safe place. things can always change in a heartbeat. if he's better and placated with enough meds to keep him docile have you ever thought of taking him home for a day or so?? or is it feasible at this point? if safety is of concern of course not. divvi
I am making decisions today that have a long term impact on my future for the benefit of my wife. I am telling myself that when DW does not know who I am. I will make decisions that will benefit me. I do not know that I will be able to do that. I think we are all dealing with those kinds of issues. At some point they want us to be happy, my wife has told me that, and she wants what is best for me. I think you should have solice in the decisions that you have made to support your DH.
But what does "knowing who I am" MEAN? If she accepts your helping her in the same way you always have, smiles at you, but doesn't remember your name, or remembers your name but doesn't remember you're her husband, is that where you draw the line? What if the next day she DOES? Or do you mean "when I look in those eyes and see no sign of recognition that I exist in any form, just blank, and it goes on for day after day..." ?? The two ends of this continuum can be very far apart, time wise.
It's like the incontinence. Many people say, they're going in when they become incontinent. But what does THAT mean? When they dribble a bit? When they have to wear depends but are reliable about defecating in the toilet? When they start intentionally peeing everywhere under the sun? When they poop any and everywhere and then treat it as finger paint? Again, a continuum.
No two cases are alike, just as no two caregivers are alike. Each of us does the best we can with the circumstances in which we find ourselves. What works one day may not work the next, you never know.
Bluedaze, you had no choice in placing your husband because of safety issues. The emotional roller coaster is always difficult to deal with, but especially at the point when you think the end is nearing and then there's improvement. It's hard to know what to hope for. . .
This is so hard. Yesterday I put our joint mutual funds into an annuity fund in my name as an income stream with a medicaid provision. I feel so guilty. I told DH what was happening. He just said "you do what you think is right." I have a lump in my throat and while I know it was a good fiscal decision, I feel like maybe I'm cheating him. I wish this feeling would go away.
I'm wondering how I'll be if and when I ever have to make the decision to place him.
BTW, what's the difference between a memory care center and an anzeimer's unit? Or a nursing home?
My husband is in an assisted living facility totally devoted to dementia residents. A nursing home or by the new term-skilled nursing facility (SNF) usually can't handle dementia patients and may even mix them in with the general population-not good. This is a disservice to everyone. When the end is near Hospice stays with the resident so no further moves are needed.
Mawzy, Not all nursing homes are memory care centers. I believe a Memory Care Center is the same as an Alzheimer's Center, because there are many kinds of dementia other than Alzheimer's Disease. Lewy-Body Disease, Dementia caused by strokes, brain damage from accidents. They require a unique kind of care and assistance than those in Assisted Living. My experience has shown that the Memory Care Units are the most expensive of all care units. Dementia care units usually have locked doors, alarm systems that alert staff when a patient wanders, and the nurse to patient ratio is much smaller. You will find most facilities offer Assisted Living Units, Nursing Care Units and ultimately, Memory Care or Dementia care units. I understand your question, it truly is mind boggling.
They don't blink an eye when they say the monthly costs in a MCF is around $5,000. And! That does not include personal necessities, medications, etc.
I have about 45 brochures and not one of them is more than $500 difference in cost from one to the other. They expect to care for a person who has sold their home and have the equity from the sale in the bank.
If this isn't going to happen, it's up to the spouse to spend their entire pension on the memory care costs and find you have to move in with a son or daughter. So UNFAIR. Why doesn't medicare help with some of this cost. The VA will pay up to $1800, but not if we get a pension, which we do.
It's so hard to know what to do. Guess this kind of stress is what kils the caregivers before the patient dies.
Nancy, if you can somehow arrange to get him into the hospital for 3 midnights (that's what they say) then he can get sent to "rehab" for 90 days. Medicare pays for that, but not more long term care.
Then: you, the spouse do not have to spend YOUR pension, only the AZ patient's one; the house is yours, and cannot be taken from you. So the AZ patient uses his income, including pension and SS, and his IRA, to pay on the facility. You keep your pension and IRA. Savings, if any, are split (up to a certain point - Jane, what is it now?). In theory he gets his half and you get yours. In reality, part of his half can pay for a new car (for you), burial pre--pay (I think for both of you), and in most states an annuity which will give you some of what his income was paying. And medicaid will pay the rest of his care. Medicaid is where the middle class meets the welfare class, according to a local elderlaw lawyer.
This is much simplified - you need to talk to an elderlaw attorney, specifically, to find out what the laws in your state is, they're all different. It may be that you can't keep living without his pension in your house. I don't know how you could manage -possibly get a reverse mortgage to bring in more income. And if your income is low enough you DO get some of his pension to help you manage but it may not be enough.
Many of us do not have long-term care insurance and are trying to tough it out/wanting to keep our loved ones at home untill they have a "catastrophic" occurence that sends them to the hospital and thence on to some kind of facility.
I do know that in different states there is a maximum amount of money you can receive from your LO's income for the "community spouse" if you have none or little income. I believe the amount depends mainly on your housing costs. I know an elder law attorney is the best way to get info.
Something I have not heard discussed here but have seen it on other sites is Divorce to qualify for Medicaid. I think if being legally Divorce is the only way to get the best care for your spouce it may be worth looking into. I do not know the details, but I heard that this is a loop hole to get your spouce qualified for Medicaid and still keep some property and funds for yourself.
I believe I will need to find an elder law attorney. Thanks.
I thought Medicare only paid for 30 days in a rehab facility following a hospital stay....not 90. Has that changed? We tried to find one for him after he broke his hip in January 2008...and they all had waiting lists (in HOUSTON!). We came home to private care nurses, which had to be paid out of pocket!......... He could not do a thing for himself 4-5 days after surgery, but Medicare wouldn't pay for a home nurse...only if he went to rehab, which was unavailable. It was surreal.
Nancy B-if your husband is on standard Medicare he should have qualified for home care at no charge to you. That means therapy, a home health aide for bathing and a nurse if wound care was needed. This is just interim care for a finite time.
Nancy, the laws are many and complex, and while some of them apply to every state, others of them vary depending on where you live. They also have a nasty habit of changing the rules frequently. You do need a very highly qualified elder law attorney with lots of experience dealing with Medicaid, for maximum protection of your share of the assets.
The best place I've seen for explaining all of this in simple terms is:
http://www.elderlawanswers.com/
There's a dark blue-gray bar across the top of the page. Click on ElderLaw 101, and then choose "Medicaid Rules" and "Medicaid Planning" from the drop-down menu. This explains which rules apply everywhere, and which can vary. Pay particular attention to the sections on "The Transfer Penalty" and "Protections for the Healthy Spouse."
We have discussed divorce as a way to save assets, several times. I've brought a couple of the earlier threads to the top for you:
Divorcing your AD spouse - A way to keep assets?
Divorce to save your assets
There are laws to protect a reasonably fair share of the assets of the "community spouse"; see my post to Nancy B above.
Sadly, under unusual circumstances, divorce might be "required", e.g., when the community spouse has brought significant assets into the marriage. Medicaid does not recognize individual property or prenuptial agreements -- all property is joint, by their rules.
Hi Everyone..Re: My DH's need for care...he DID have physical therapy for his hip replacement after he was up, but the problem was the hospital discharged him 4 days after surgery, and he was beyond NORMAL. He had to be physically restrained in his hospital bed, he would not keep his leg in the foam "stocks" intended to hold the hip in place, he fought everyone, spit out his meds, stripped off his clothes, was in diapers,....and the list goes on. I HAD to hire a 24 hour nurse to help me. His strength was beyond imagination. Four or five days after we got home, he developed a rapid heart beat - 160 bpm and up - and a fever. The PCP sent him back to the hospital..they said he had a slight case of pneumonia and begain nebulizer treatments, etc. He still could not go to the bathroom unassisted, and to this day, has no recollection of the entire event.
Again, we had to come home - no rooms in the rehab "inns". I called a Home Health Care Agency and this time, we used them 12 hours a day...and at night, I slept in the family room where his hospital bed as located. We were in this situation for about a month all together. It cost almost $1200/week until I felt I could take over again. I had people calling Medicare, agencies, Everywhere!. Again, we were able to get physical therapy for about six weeks. They said we could not tell Medicare he had AD, because they might deny PT on the grounds he couldn't remember what he was being taught. That WAS true for OT, he didn't remember the ways the OT showed him to put on his socks/pants/etc. for 5 minutes. Frankly, their was WAS confusing, using the forms, pull-up sticks, etc. It was easier to help him step into his pants, and put on his socks myself.
I first asked this question in Dec '08. Bill is still with us. Hospice is still with him. At my request his seroquel is being reduced as he sleeps most of the time now. Due to decreased circulation his feet and legs are purple, the rest of him is dead white and cold. Most days he is still up in a chair and on a good day the aides can walk him a short distance. He is still eating and has not lost weight. When his gorgeous blue eyes are open they are blank. Someone please tell me there is a reason for this before I go crazy.
BlueDaze...so sorry you have to go thru this....and yes there is a reason for this... The reason is that kU7%%6345 k0))970776gblm.,dse7&6543@79hbBHHH sd f$6#xXxu*^4thhgkbdfb //deaosd fwooir$##%#@u710-3-09834fwPUjjj .,lw8*9 .8**673UHKHG65445cdl1 ,dad;do5%9dsb and that is the only explanation I can come up with....oops lost my connection for a bit....
(((((bluedaze))))-so very sorry, hugs to you -i guess we have to know it is for some unfathomable reason. god only knows why he keeps them in this difficult hold. your Bill was strong before and if i remember there isnt much wrong other than the AD physically? the added stress of seeing them languish in the end stages are so difficult for family moreso than them i believe. hearts heavy for you friend, divvi
I wish I knew an answer to tell you. However, as divvi said, your husband was strong & in good health other than dementia. My husband is also in good health other than dementia, I keep thinking I hope something else takes him quickly, & not the years of dementia. Hugs to you, Kadee
bluedaze, you said: "Someone please tell me there is a reason for this before I go crazy."
There is a reason for this. You do not have to go crazy. The reason is that Bill, somewhere deep inside, isn't ready to cross over. His will to live is very strong. YOU are very strong as well, and you can and will get through this, even though it is so very hard. As Divvi said, it is so difficult for family in the end stages, more so than them. I continue to pray for you and Bill, and that his struggle is over soon. It is almost unbearable for you, I know. I am here to give you all the hugs you can take!!!! Be strong, dear friend! (((((((((HUGS)))))))))
bluedaze ((((((((((((((((HUGS)))))))))))))))))))))for you and Bill, I am so sorry you have to go through this, I`m sure it is so hard to go through I wish you all the strength and comfort, you will get through this. GOD BLESS YOU
bluedazee (((hugs))) to you both. We are at about the same place or not that far behind you. The empty look, no longer walking, little to no expression, mouth open a lot, right now eating regular food but soon to be changed to pureed.... I am not so sure that there is an actual reason for him to have to be this way. I do know that for my dh that his mind going before his body is a good thing. His hands are contracting sometimes his fingers will be blue from being squeezed so much. He is off all medication and on comfort care only but watching the almost daily changes in him is so painful. I cheer myself up with thinking about things that I want to do after he goes.
Oh Nora, words can't explain how I feel for you and Bill. Please know that you are both in my thoughts and prayers daily (I mean that sincerely). There just aren't any easy answers. (To so many questions). Take good care of yourself, love to you!
Bluedaze, Everyone here has such hugs and warm words to say. I hope that you can read all of this over and over to get a real sense of all the hugs and blessings we are offering. The same for you therrja and any one else going through this very difficult stage. We all care so much about each other. My prayers are with all of you.
therrja and bluedaze, my heart aches for you both. This is such a painful time. Life lingers on, the quality is gone, you don't know if wishing for it to be over is the right thing, but how can you wish for it to continue. It's so very difficult. I wish both of you strength and comfort from knowing you have many e-friends who care.
bluedaze, I am so sorry to read what you are now going through. I think this disease has taught me more what the verse means when it says "you will pray for death and death won't come." I can understand this more and more as I watch this horrible disease unfold and progress. My thoughts and prayers are with you right now.
therrja and bluedaze, my heart and hugs go out to you. I do so relate to what you are saying. I ask myself daily - why? Ralph also has swollen feet and legs, with no walking at all. He was in good health before AD. Now we have hospice and also have reduced the Seroquel. It is so heart breaking and the tears come for us and what he has lost and what I have lost. It does make you feel like you are going crazy. I wish I had an answer for us, but it seems like a waiting game and very depressing. The last few days have been extra difficult and lonely, but trying to hang on. Never an easy time with this dreadful disease.
Bluedaze, so very sorry to hear. I know this must be so difficult for you to see Bill this way and knowing the end is near, but it won't come. It's really heartbreaking. Jane's quotation really made an impact on me. May Bill pass gently into the night with little or no pain. My heart goes out to you and you are in my thoughts.
Bluedaze, I am with you in spirit, wish I could give you a hug and hold your hand for a while. I also am praying that God will release Bill in a calm and peacful passing. Please take care of yourself, remember to eat something everday and try to keep your fluid intake up. Know that you are not alone, we are all right beside you. Love you Phyllis
Bluedaze, my heart goes out to you. Hopefully, he will be free from this disease soon . You've been through so much and already grieved enough for a lifetime. {{{Hugs}}}
Oh girls, we all sit here and read what you are going through and know that we are next. Be strong when you can, come to us when you are weak. We will be your strength while we can. You are loved and valued. Know that you are and have been the best spouses, caregivers that you can be. What more could anyone ask? Feel my hugs, arms around, Susan
Kitty thank you for asking. Friend had her surgery on Monday. Tonight she is on a vent-not good. Bill is doing very poorly. With his very bad circulation I am afraid of pressure sores developing on his heels. If this happens they won't heal. I am afraid of infection and gangrene-both very painful. It's one thing to watch him die-but please not in pain. No one should have to go through that. We live day by day. If you can call it living.
Bluedaze, you need to get those special "boots" for preventing pressure sores. They hold the heels up off the bed and they really work. Mary Ann wore them for months, but they allowed her wounds to heal finally.