pfllhMay 28, 2008

Have any of you used Hospice? The doctors have told me it's time for my husband to have their services. I am very torn on this.

The nurse that came to the house to discuss Hospice was very nice. She explained Medicare and BCBS would pay for their services. I asked what if he needs to go to the hospital. She stated I'd have to revoke the Hospice contract and then Medicare would pay for the hospitalization, You can go back on Hospice, When I asked and if he needs to go to the hospital again???? Same procedure but Medicare would probably question what was going on. If I wanted aggressive measures to keep him alive then perhaps Hospice was not what I needed.

A friend that I discussed this with, suggested I contact VA. VA needs all the medical info as he sees civilian doctors, not VA doctors, VA does pay for Hospice. Great, I thought, If Va pays then it won't cause problems with medicare and BCBS paying for the hospital.

Wrong, the Hospice people are argueing on that of VA paying.

I talked to another person about the situation at the Hospice office. I wanted to go through the phone and snatch her bald. She went into all that of what Hospice does to make the client more comfortable for them to pass more easily. Do what??? If they do all that they can do but he can't catch his breath from fluid build up or he's having another heart attack, I want him taken to the hospital where something can be done. I was told I would be prolonging the inevitable. Well, I'm not going to be put in a position to say he can just die. That is totally wrong to me. It is up to God to decide when it is our time. She came across as the grim reaper.

What have you done to work with them but keep the option open to do whatever is necessary?

Thank you


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I personally have never had Hospice, but my neighbor at my old place did. Her husband had Alzhiemers and they were called in, not only to give the wife a break, but to see to, well, the end. Of course the wife was not about to let anyone hook her DH up to life support as she knew he would not want to live like that because it is not really living. So, in her case, it worked out having them come in. They did not come every day, but when there they took really good care of him.

When he had to go to the hospital they had to null and void the contract with hospice for medicare purposes, but once he came back home hospice was right back with no problems.

I have to say that I am glad my parents let me know their wishes about heroic measures, neither one wants them so in my case, it will be easier when the time comes because I will know I am doing what they want. I guess what I am saying is, in my case I would use Hospice, but it sounds to me like you want all possible things tried so I don't think Hospice is for you. The whole purpose of Hospice is to help families face the end, and for the patient to come to that end in the comfort of their own home.

It is hard I know, I will pray for God to guide you to make the right choices and for Him to walk with you every step of the way.

Linda J

    Bookmark   May 28, 2008 at 7:46AM
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One way or the other, he is on his way out of this world. His ending can be postponed by medical intervention. Or it can be quicker, more peaceful and more like God intended. If you are wanting to leave it up to the Almighty to make the decision, think about whether He would want one of His children to go to the brink of death over and over again just in order to live a few days longer.

I know that sounds blunt and heartless, but that's about what it amounts to. Hospice or Hospital with tubes, IVs, respirators, and other intervention methods.

It's up to you to decide. Hospice is there to help ease the inevitable. Hospitals are there to prolong life until nothing else can be done. It's the role of a hospital...to try to cure in anyway possible, to avoid death.

The difference between the two may be only a matter of a few days, if any. Hospice is there to make the ending easier, not longer. You will have to accept the knowledge that he is not going to get better.

Which would you want if it were you??

Hospice can also come to the home and help with medications, treatments, etc. This type of care may be what you are looking for.

    Bookmark   May 28, 2008 at 8:19AM
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1) The person you spoke to at hospice may not have been a medical person. Hospices give oxygen, give lasix (diuretic to get rid of the swelling), and pain meds. Anything to comfort the patient. They do not hasten death (another misconception), but in many cases they prolong life because they make the patient more comfortable.
2) Were you speaking only to the hospice associated with a hospital? You can shop around for hospices. Where I live we have several to choose from. And it is your choice...no doctor can tell you you have to have this one...if there is more than one to choose from.
3) Hospice is a Medicare benefit, VA too, so paying for it won't be on your shoulders....EXCEPT...for medicines NOT related to the terminal diagnosis. For example, let's say the diagnosis is end stage heart disease. Well, the oxygen, the diuretic, and the pain meds are provided as part of the treatment and comfort measures for the diagnosis. Now let's say that while on hospice, your spouse twists his ankle. Obviously that is not related to the terminal condition. So, the regular medicare picks up the bill for the xray and splint to care for the ankle.
4) Your spouse can be a full code, in which case, if he has a heart attack, you call 911 and revoke, off to hospital for all the fixes, including intubation, defib, etc. Most patients on hospice however, have do not resuscitate (DNR) preferences, and have decided NO more trips to the hospital, just make me comfortable here at home. The hospice has different levels of care, which the nurse will determine needs to be increased from routine care if the patient requires more intensive comfort measure.

Interview several hospices, but remember, it is not CURATIVE. It is comfort and peace. I wish you the very best during this trying time. Hugs to your loved one.

    Bookmark   May 28, 2008 at 9:20AM
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Oh, I thought of another important thing about Hospice....they are required to offer bereavement services for at least a year after the death. That is something you'll never get at a hospital. They really go far in helping families cope, grieve, and find support. They are just as much there for the support of the family as for the care of the patient.

    Bookmark   May 28, 2008 at 9:30AM
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.........and I think the doctor recommended Hospice to help YOU as much as help you DH. They can be a God send for you, to have some relief and know they are only a phone call away should you need them.

    Bookmark   May 28, 2008 at 9:38AM
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We've used Hospice - because living wills, end of life directives, etc. were all in place and my Father wanted to die at home with no heroic measures, no resuscitation, no CPR - just comfort care and to be able to DIE WITH DIGNITY. Hospice made this all possible. It was a beautiful thing - and they did come to the home at a moment's notice any time day or night.

But, if you haven't come to terms with the inevitable end of life situation, Hospice is not for you. It's not a question of playing God - maybe it's more playing God to keep someone alive when there's little hope and the body is ready to give out. There simply comes a time when suffering has to end. Hospice can go a long way in easing the pain you feel for your husband, too.

But death is a very personal thing - for the person dying and for those of us who love the person dying. It's hard, but perhaps the time has come to put aside your agony, and who is going to pay for what, and think in terms of what your actions might be putting your husband through.

It's done in the name of love, but sometimes love is letting go.

    Bookmark   May 28, 2008 at 10:23AM
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Have you and your husband discussed these matters? Do you know his thoughts about it? You didn't describe his condition other than to say "The doctors have told me it's time..." Appears to me their opinion is there's nothing more to be done.

If there's nothing more to be done in terms of likely recovery, that's what hospice is for. I've used them twice. They're wonderful.

Everybody dies. A lucky few get to consider the circumstances of their own passing. Hospice can be very helpful for those people. They certainly were for us.

    Bookmark   May 28, 2008 at 2:24PM
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I interviewed two hospice companies and would never use them unless death was imminent. When you hire them you have no say over his meds or treatments. Of course you can give them a 30 day notice and fire them. My sis used one and they kept him on his meds until a new nurse came, she took him off of everything. She said he's dieing and the meds are only prolonging a life without quality. That is how I felt when my husband was in a care home.

    Bookmark   May 28, 2008 at 3:04PM
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"...never use them unless death was imminent."

Well, yes. That's what they're for. Hospitals do everything they can. That's what they do. Hospice is about comfort care when the patient decides they've had enough of the rescue attempts.

"...you have no say over his meds or treatments."

Sorry to learn this. We certainly did have a say. Our participation was quite welcome. We consulted often.

    Bookmark   May 28, 2008 at 3:23PM
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We had the same experience as asolo... it was all good and we were active participants in the process.

And to be honest, when death is imminent, does it matter if the patient takes insulin or blood thinners or anti-psychotics or Lipitor or any of the tens of thousands of drugs one could take? When my time comes and the possibility existed I'd be facing a painful death, I hope I'm loaded up with as much morphine as the Hospice Worker is carrying. I don't say that to be flip, but that's comfort care to me. And I really don't think I'd care much if the drugs facilitated shutting my systems down.

But, if no stone is to be left unturned to keep someone alive despite the advice of medical professionals, Hospice is not for you. If this is something that was never discussed and you don't know how another person really feels about it; again, Hospice is probably not for you. If you feel guilt and cannot bring yourself to make decisions for another who can no longer make them for himself, Hospice might not be for you.

You have to find where YOU are in all of this, what you can deal with and what you would be willing to relinquish to the professionals on behalf of another.

With my experience in dealing with Hospice, I can't think of a better way to leave life than in the care of people who have no other charge than to make my death dignified and easy.

This situation is not a one size fits all and I respect the fact that you might be in a very lonely place right now.

    Bookmark   May 28, 2008 at 5:18PM
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Thank you for all the responses.
My husband has several health issues. The worst is his heart. He had a quadruple bypass in 94 of which very little is functioning now. He has congestive heart failure, COPD, phantom pain from his leg being amputated and problems breathing.
He is home and on numerous medicines for his heart and for the phantom pain, and oxygen when needed. In the past 9 weeks he has been in and out of the hospital 7 times. During those stays, he's had congestive heart failure, arhythmia and heart shocked twice, angeoplasty and the defibulator replaced. With all the health problems, he is not a candidate for a heart transplant. His cardiologist has said there is really no more that can be done except to treat him symtomatically.
You are probably saying how could I even consider doing more for him, let him go. He has a living will and is not DNR but does not want kept alive on machines where that is all that is keeping him alive. He keeps telling me, "I don't want to die, I want to be here with you. I love you so much, I don't want to leave you."
I can't go anywhere. I can't go to any doctor appointments for myself and my health problems. If he slips getting into the wheelchair, it takes a while for me to get him up as I have bulged discs in my lower back. My youngest daughter helps as much as she can so I can go to the base and buy groceries and to the BX.
I do NOT want to make a decision based on my needs. I want to do what is best for him. I honestly don't know what that is. He's in a lot of pain but so are a lot of people. That is not a reason to die. As his heart is functioning very little as so much of the muscle is dead, we all thought it would just stop. It hasn't as he has a will to live. He has been in a situation several times where he was not expected to make it. He did and spent time with his grandchildren and children and me. He enjoyed taking rides to just see things. Now he is to weak to go for rides as he cannot get into the vehicle and I can't lift him like that. He did come out side to see the surprise. One of the rescued shetlands had a baby. He just smiled and laughed. It takes 11 months to foal so she was pregnant when we got her. He enjoys his lily bed as it is in full bloom right now.
Hard decision, yes. I have cried and cried and asked God to give a sign of what to do. I just feel basically numb and go through the motions of caring for him. In 2000 is when his health changed dramatically downward where I've been a caregiver.
I do sincerely appreciate your thoughts.

    Bookmark   May 29, 2008 at 12:43AM
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Have you asked him how he feels about Hospice when you had the nurse come out the other day?

Do you have a minister or spiritual adviser who could pay a call...sort of see where he/you are at? If not, I'm sure the hospice could arrange a call from one of theirs.

It sounds like he is indeed appropriate for hospice given what you've said.

One thing I've heard time and time again...is that when a person says "I don't want to go to the hospital anymore, I'm tired of it", is a VERY good clue that they are ready for in-home services of Hospice and the comfort of being in their own home, with their own family, their own pets, photos, and flower beds to enjoy.

I will continue to send heartfelt thoughts and prayers your way.

    Bookmark   May 29, 2008 at 9:37AM
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Lynn, you are in a terrible situation. We don't have to tell you that. If he says more about how he doesn't want to die and leave you alone.....remind him that he will ALWAYS be with you and will be able to watch over you in spirit....that Love is great and enduring. It doesn't stop at death. Try to tell him that you will miss him too, but that you think that you will be OK since you have your children to take care of you and your needs.

Remind him that everytime you see your children, he will be there too. I think that one thing he needs to know is that it's alright to let go. Sure, he enjoys the little things like the lilies. It would be unnatural if he didn't, but if he believes that there is a life after death, then he should also believe that there will be as much beauty afterwards as there is now.

He may need to face the future too. Does he know that the doctors have said that there is not much more to do? His time is running out. If you can handle him at home, all you need to do is get Hospice to send someone to the house to help you.

    Bookmark   May 29, 2008 at 9:42AM
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"Does he know......?"

Does he know how his situation has been characterized by the Dr.? Is he able to participate in the decisions you're considering?

From your description it sounds like he's not altogether with you.

    Bookmark   May 29, 2008 at 11:08AM
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I was told by the care home, that I would no longer have control over my husbands medical decisions. They knew I didn't want him to take Alzheimer's meds. Or maybe they didn't want me to use hospice since I wasn't automatically signing up the one they recommended. Also death does not have to be imminent, the hospice told me that themselves. They would care for him if he met their criteria even if he wasn't at death's door.

    Bookmark   May 29, 2008 at 11:20AM
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Generally, the medical profession considers that someone with 6 months or less to live is a candidate for Hospice - and it's usually recommended when the doctors make the 6 months or less "guess". And it's only a guess, but an educated guess based on all probabilities. That's usually the Hospice criteria, too. In effect, 6 months could be considered "imminent" if you want to split hairs or get into semantics.

    Bookmark   May 29, 2008 at 4:56PM
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FWIW....both of my situations were home-care. The hospice staff was quite wonderful. I certainly did have "control" over the meds and other care. On several occasions there was discussion about what was best at some particular moment or event. Sometimes their opinions prevailed; sometimes mine did. However, we all had the same goal -- which was comfort-care for the dying person -- and there was no difference of opinion about that. I am able to keep my emotions under control in such situations and perhaps that allowed them to conduct themselves as they did more easily than if I hadn't. Don't know. Only know our interactions went smoothly at all times.

There seemed to me to be mutual respect among all in attendance. However, I certainly surrendered no "power" (I had medical POA) to the hospice people. I spoke as I believed my charges would have if they were able and my opinions were received and responded to in that context. The cooperation we received was consistent....and magnificent.

I had promised my charges (both cancer patients) that they wouldn't have to suffer physical pain on their way out. The hospice folks enabled me to keep those promises. They really were special people. And, actually, it was a special time. Hospice people are tuned into that in a way typical medical practitioners are not. That difference is important when the end is near.

I know there are people who can't endure "being there" during these times -- for whatever their reasons may be. (I don't judge them!) From my experience, if I was one those people, I would have every confidence the hospice folks would perform admirably -- if not impeccably -- without my attendance. I've learned to trust as well as respect them.

Among those of my acquaintance (quite a few) who have had the experience, every one has similar praise for hospice.

    Bookmark   May 29, 2008 at 5:56PM
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I suspect Hospice varies some from state to state - that said, my Mom has been in Hospice for 3 years. She will be 91 next week and has had MS for 50 years. She cannot even feed herself. In Texas Hospice is for 'end of life' care, according to our agency and does not mean 'imminent death', or 6 months or less to live.

We love our Hospice agency - they have provided Mom's meds delivered to her door at no cost but they DO NOT provide meds to extend her life, i.e. an upper respiratory infection, Dad paid for the meds. Hospice did not forbid the drugs being given, they simply do not provide them.

What services we got: nurse came by once a week, changed catheter, bath aide came and bathed her 3 times a week, chaplain came at least once a month, social worker came at least once a month. They do have other services they provide, just none that we used or were applicable.

Mom has been in a nursing home for a month now and the nurse still comes by weekly, the aide still bathes Mom 3 times a week. As I understand it, Hospice is to ensure that end of life care is based on the patient's needs and is targeted at keeping the patient comfortable and to assist the caregiver. They also provided a hospital bed, an oxygen generator, a "geri" chair. If Dad had asked for respite care for (I think) a week, they would have provided that.

I wish Deb from Canada would come over to this thread - her husband had very similar issues as the OP's DH.

If my DH doesn't "beat" his cancer, we certainly will call in Hospice at the first opportunity.


    Bookmark   May 29, 2008 at 8:57PM
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My husband was diagnosed to have the beginning stages of dementia 2 years ago. He's also on some pretty strong medicine that can effect his thinking clearly. I t has always been difficult to talk to him about death. This was compounded 2 years ago when his baby sister, age 48, died of a sudden brain hemmorage.
He does believe in God and an afterlife. He has never turned away from God.
This afternoon, his phantom pain was giving him fits. He was lucid so I asked him if he was tired of pain and he said yes. I asked if he ever thought about dieing and no more pain and he said yes. I reminded him of the last hospitalization and what they did to care for him. I told him we could get a nurse to come in and do all that for him here at home. He said NO. I kept calm and told him that the nurses were the ones that really took care of him and he agreed. Then I said then maybe we could get a nurse to come here and you could stay home and not have to go to the hospital. He raised his voice and said. " NO, I want to go to the hospital."
Just keep running into walls.

    Bookmark   May 29, 2008 at 10:02PM
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My dear lady, you're in a rough place. I can see that. Please do take care of yourself while all of this plays out.

    Bookmark   May 29, 2008 at 10:10PM
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Hi Lynn,
our friend Carolyn asked me to check in so here goes, i lost my Al a little over 15 months ago, and it has been hard! Al was a diabetic since he was 14, he was a double above the knee amputee, had congestive heart failure, had had alot of mild heart attacks, and alot of other things wrong with him, he had a nurses when he came home from the hospital after the amputations to deal with the dressings 3 times a day. he was to move into a long term care hospital just about 8 or so blocks from our home, i just couldn't do this to him, so he said at home with me and our son and daughter, and there i kept care of him with no help from his relatives at all. on my 51st birthday i got a puppy from Al - he named her Gracie Joy Divine, and on the morning of feb. 21 we were still playing with her a 2 am (the people who breed them were shift workers, so the puppies were up at night) so things were fine, then at 7 am i was in the kitchen making coffee, and the alarm on our clock went off and kept on buzzing for 2-3 minutes i came into the bedroom and said to Al aren't you going to turn it off, he last thing he said to me was i can't and then he just sat there, i called 911 and here in this city the ambulance comes first - one of the firemen was a friend that he knew since he was 5, that morning the firemen even cleaned off the ramp of snow (so i knew something wasn't right), i got to the hospital and it was one of his primary nurses that used to come to the house (another sign, i think), the er doctor said that he was probably in a diabetic coma so they would transfer him to icu -- so i went home and went back to the hospital later, things looked promising. the next day they said he would have a cat scan and mri. i remember seeing Al hooked up to all those machines, my son and i were taken into a family room where the doctor said that he had suffered a massive stroke on the left side of his brain, we could leave him hooked up to machines and hope he came out of it or turn off the machines, so at 5:20 pm they turned off the machines, my sil was called and she was her nasty self, Al was still alive and she was taking funeral and having him cremated, i told her no way he would have a regular burial and she got all snotty and told me don't ask me for one cent. funny how you remember things! but the good news is i don't have to talk to her anymore! the priest came, he was so nice and very young about 35 or so, and was so caring. i had to go home to get a migrane pill -- we live 3 minutes from the hospital so i told the nurse i would be back and that our son would be staying (our son was almost 24 then), the nurse said that would be a good idea and that alot of people wait until their loved one leaves the room before they pass. Matthew our son said that dad opened his eyes, turned to look for me and then turned his head and look at him, and just before 10 pm he passed away. so he didn't feel any pain, and i had a call to come back to the hospital and just missed being with him by about 4 minutes.
Lynn, this was the hardest decision i've ever made in my life. Al didn't have a living will etc. i will always remember him telling me about 5 times a day saying i love you, and also thanks for taking such good care of me. (i had to give him his insulin 4 times a day, i washed his hair, made him come outside and sit in his wheelchair, made him go out in public, he said, how could you go this, people will see you with a gimp. i said who cares.
so Lynn i say go with your heart, not what other people say.
Al was 52 when he passed away, he had graveside services, the announcement was in the paper only the day before and had about 150 people that came out on a february afternoon, my Al was loved by alot of people.

ps sorry about the length
bp -- how's the reading going

    Bookmark   May 30, 2008 at 3:21PM
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I am so sorry your special friend is gone. I truely believe they stay in a way we really don't understand. Years ago when I lost my grandfather, I heard I Corin., Chapt. 13. Love is forever. That has sustained me in the loss of my father and sister and friends.
I appreciate you posting. I know it had to be hard for you.
It is hard to make a decision when so many different people, family and friends, tell you what to do. With what he has said, I'm afraid bringing in people to help would upset him. At the same time, my health is going downhill with having to stay up all night to make sure he doesn't fall or hurt him self as he keeps getting out of bed. With the medicine, he doesn't realize what he's doing as the night time medicine makes him so groggy. I have some health issues and know I should see my doctors but the only way would be to take him with me. I am not able to physically lift him into the car.
Having help would be so appreciated but at the same time, I don't want him upset where it over works his heart.
Making the decision is not something I want to do. I've called and called and left messages but the cardiologist assistant has not returned my call where I could get some questions answered to help make the decision.
Thank you so much for taking the time to tell me what you went through. My heart is definitely involved in the decision. I can't let my emotions of wanting him to get better come into play as that is not going to happen.
Thank you

    Bookmark   May 30, 2008 at 3:53PM
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one more thing......who is gonna take care of him if you don't take care of you? You can do everything possible to take care of DH but if you don't take care of yourself.......

let me tell you briefly about Mom and Dad - he retired at 63 to take care of her and give her a better quality of life (he spoiled her rotten) - as time went on, they needed more help so got person in days to help, that changed to full time help years ago.

He finally reached the point where he is running out of money to pay for full time help so he has been put in the position of having to put her in a nursing home and spend down their remaining funds.

She is having a hard time adjusting to: meals being brought on schedule, rather than whenever she wanted to eat; being brought food on a tray that is prepared for the entire home rather than what she wanted to eat; being hurriedly fed (after all, they have other folks to go see about) rather than eating at a leisurely pace, and so on and so on.

Now he is stressing out and having panic attacks over living alone.....

All this is meant to make you think/realize that you CAN'T MAKE IT "RIGHT" for him.....you can only do the best you can and there will be times that what is best for him is actually not what he wants but what you need to do for you.

I'd be on the phone twice a day with the cardio doc's office until someone called me back.

In addition to dealing somewhat with all of the above my DH has stage 4 esophageal cancer and I am still working full time (so he has insurance).


    Bookmark   May 30, 2008 at 4:26PM
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What do you mean by spend their remaining funds? Have you done a division of assets? You are allowed to keep half of the assets = half the money unless you have a huge amount of money then in our state I could keep $90,000 plus $3,000 for my husband. Maybe I'm not understanding this.

    Bookmark   May 30, 2008 at 7:15PM
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Every state is different and the rules keep changing. I was originally told I would have to spend down half my parents assets in order for my mom to be approved for Medicaid. Well, turns out since most of the money is tied up in IRA's in my dad's name, they are only looking at mom's income! She does not have but a pitance from SS and a very small IRA, only around 13,000 and she can keep, in her name only, up to 8,000. So it is looking good for her to get Medicaid. Now, when both parents are gone, you can bet they will be here with their hand out wanting some of that medicaid money back from the sale of the house!

    Bookmark   May 30, 2008 at 7:38PM
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Hi... I'm Linda from Ohio. I'm sorry to have to meet you under such dire circumstances. My father has had cancer for the last couple years and has been thru all the same basic medical problems as your husband (including the heart problems)... I've lost count of the number of hospital visits and the last doctor recommended we call hospice. We decided against calling them only because we didn't want him to give up hope. For us, it was the right decision because he is much improved. Anyway, I can definitely relate to what you are going through. It has to be so difficult for you since you feel so "trapped" at your home. Doesn't he have a urinal? You had said "he keeps getting out of bed during the night... Perhaps that would help.

Anyway, my heart and prayers go out to you. You are a wonderful and special lady for being so kind and caring and being there for him, no matter the difficulty. But, you also know you can't keep doing this. You need help. I think perhaps Hospice could be that help. Everyone I've spoken to regarding them say they an outstanding organization. They would only be a phone call away when you begin to feel scared, or isolated, or helpless or need someone to help you with him. As a few have said above, you and him must first decide if you are at that point where their services might help you. It sounds like he's scared and still hanging onto hope that he'll be okay somehow. The doctors think not. Who knows what will happen? Only God. But you could make a list of the "difficult questions" to ask him and find out what his wishes are. Such as the DNR (Do no resusitate)...Calling hospice for help... That way, the guilt is removed from you because you are following his wishes. I think even if he has someone come, and he has a heart attack or has his lungs feeling with fluid, they would give him medications so he would not feel any pain which is what you are so afraid of, sweetie. I'd ask them about that too, so you feel more comfortable with the situation before it arises. Just keep reading your bible and take care of yourself and pray for guidance. Linda

    Bookmark   May 30, 2008 at 11:55PM
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Hospice is not at all about giving up. Have you looked online to see if there is a hospice association for your state? They might have some resources and lists of all the hospices in your area.

Also, you might should get a copy of the "Five Wishes" brochure for your husband to complete. Then both he and you will be truly aware of what he wants. I'm sure if you google five wishes, you can find it.

    Bookmark   May 31, 2008 at 9:25AM
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I know this is hard on you and your DH, but please mention to him what a help a nurse would be for YOU. I suspect he is not seeing the whole picture and does not realize the drain this is putting on you. You have to be totally honest with him, like you are here, he loves you but is probably not aware of all you are going through.

In home care is there for both of you, tell him you love him with all your heart, but need a little break to see to your own needs. Maybe he will comprehend more if you are really honest with him.

Under Medicare/Hospice you are allowed so many days to have an aide come in to sit with your loved one while you leave to do things you need to do. So please, please start taking care of you. As others have said, what are you going to do if you can't take care of him? Who will be there?

Linda J

    Bookmark   May 31, 2008 at 9:52AM
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Here is a link you might want to look at. It will answer lots of questions you may have.

Here is a link that might be useful: Hospice

    Bookmark   May 31, 2008 at 9:56AM
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Well, things are worse. He does have a urinal but just keeps getting up during the night. He's not sure what he wants or where he's going. Our AC is not cooling as of 9:30 last night so opened the doors and such and have the ceilig fans going on high. He went zooming out to the deck saying he had to go to the bathroom. I thought he was going down the stairs but was able to stop him.
I am staying up all night and getting in a nap during the day. I am really dragging. My daughter has been pleading for me to get Hospice involved. I guess I'm just so tired, I'd sign up now but think they might not appreciate it on a sunday and at 5:50 am. :O)
I think this has to do with my feeling guilty as if I'm giving up on him. I still have not been able to talk to the cardivascular assistant. Always busy or not available. I'll have to make a decision without my questions answered. I am extremely disappointed in them for not talking to me. She's the one that said they would be there to help me any way they can. Yeah right!!!
I have accepted the fact I cannot do it all myself and need help. It just seems selfish to consider my needs.
So much I want to do that I enjoy but can't. That leads to resenting the situation. He made the wrong choices after starting with heart issues in 83 by not listening to the doctors and continued to ignore their advice through the years to some extent. I get angry about WHY. WHY am I having to give up everything because he made the wrong decisions. Then I feel so bad for even thinking that. Like being on a yo-yo. I'm feeling things that I shouldn't.
I will sign up for Hospice tomorrow as it just can't continue as it is. I just have to find a way to convince him I need help. I've tried explaing that my legs and feet are having spasms from the neuropathy and the bulged discs are so much worse now, He just doesn't want a stranger in our home. Just have to find a way to convince him.
Well this ol' lady has rambled much to much. I can't begin to tell all of you how much you have helped me. Just feel so alone at times but you have been there with advice, suggestions and reference info. Thank you so much.

    Bookmark   June 1, 2008 at 7:13AM
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I am glad to hear you are going to get help. As for convincing him, don't worry about it. Hospice is more than capable of handling the situation. You need a break honey, get Hospice set up and then get out of the house for a little while, even if to just take a short walk. It will do you good. Better yet make a doctor's appt. and get yourself taken care of!

I understand the feelings of guilt. The night before my mom's massive stroke she wanted me to come to the hospital, dad and I had been there every day for 2 weeks. I was exhausted as was my dad so we did not go in. We thought she was coming home in a day or two. Got the call at 6:30 the next morning telling me she had a massive stroke..........talk about feeling guilty, but I realize she would have had the stroke even if we had gone in to visit.

Keep us posted on how things are going and know we are all here for you!

    Bookmark   June 1, 2008 at 7:32AM
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Lynn, please feel free to come here any time to vent/ask for advice/cry on our sholder or whatever.

I too am trying to squeeze in my own medical issues inbetween DH's cancer treatment, dealing with Dad (the new "idea" is for him to spend every weekend at our second home with us - Yikes, like I need one more person to look after - and, oh, by the way if I have him when do I have time to go see Mom?)

Perhaps you could start by reminding DH that you simply cannot leave him alone.....and that means that when you need to go to the Dr. you must have a 'stranger' in to stay with him. (don't stress the 'stranger' part)....perhaps this could be a "new friend" who has offered to help you.....I am seeing from your posts that your DH has issues with coherent thinking.....so perhaps he will accept the 'new friend' idea.

Hang in there and don't feel guilty - it is too draining just keep reminding yourself you are doing ALL you can and the BEST you can. You are NOT Superwoman and you also don't have a magic wand you can wave and "make it all right".


    Bookmark   June 1, 2008 at 2:04PM
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Lynn, you have nothing to feel guilty about. You have taken wonderful care of your husband, even to the detriment of your own health. The fact that you can no longer bear the burden all by yourself is not a matter of letting him down or abandoning him. It's about facing the reality of the physical toll that caregiving is taking on your body. And it's about the emotional strain that caregiving inflicts.

From your descriptions, I'm wondering if your husband is even able to make fully rational decisions. The getting up at night, the adamant refusal to have anyone come in to help, the insistence on continuing medical intervention -- it sounds like the illnes and fear have taken a hold and made him unable to think things through reasonably. It also sounds like he's unable to focus on anything or anyone other than himself.

If that's the case, then you shouldn't take the things he says so much to heart. You need to think these things through without fretting so much about his opinions and feelings. Contacting hospice is a good idea. You need a break from the physical & emotional strain, some time to gather your thoughts.

As Linda said, keep us posted. We're pulling for you.

    Bookmark   June 1, 2008 at 2:09PM
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If he continues as he is doing, he will probably be back in the hospital soon. This time, instead of bringing him home, make arrangements to have him taken by ambulance to the hospice or nursing home. Medicare will then pay for his care for a certain number of days.

I agree with the others. His dementia may have reached a point where logic and rational thought is no longer available to him. He certainly doesn't seem to understand what he is putting you through. I would hate to think that he knew and didn't care enough to try to make things easier for you.

    Bookmark   June 1, 2008 at 7:29PM
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