Lynn (pfllh ) how are you?

lindajewellJune 2, 2008


I have been thinking about you and wondering how things are going. Did you call Hospice? Prayers continuing for you and your DH.

Linda J

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I'm doing OK. I talked to Hospice some more. It just grinds at my soul that of them saying if I will want to take aggressive measures and have him taken to the hospital, hospice may not be for me. When I ask, IF there is something that can be done, you would do nothing and let him die? I cannot make a decision as to whether he lives or dies, BUT if he needs help, I would get it for him. They say I'm prolonging the inevitable.
We all have a right to live and it is not our decision as to when we die, unless we put things in place to make it happen. There answer of, they would make him as comfortable as possible, does not make it right. This is legalized euthenasia to me. You've signed the papers agreeing to their phlosophy so nothing can be done.
In cases, as my sister, she refused any more treatment and the cancer spread like wildfire. She needed that comfort of as little pain as possible. Someone to talk to outside of family. I can understand the philosophy in cases like that. To just let his lungs fill with fluid where he literally drowns as I did nothing to help him is totally unacceptable.
It is sooo hard to make a decision. On the one hand it would be so wonderful to have help and rest some. It would be so nice to get to go to bed at night instead of staying up all night and grabbing a nap here or there when he's in a deep sleep. It would be nice if he didn't ram the electric wheelchair into walls and doors causing big holes or scraping the cabinets gauging them, or running into things or over them.
The chair helps him get around and when he's thinking clearly, not so much damage but if he's had all that pain medicine, he even runs into me.
I honestly don't know what to do, Linda, but I do have to make a decision soon. Putting him in a nursing home is not an option. I wouldn't even do that to one of our animals. How and why I hate nursing homes is a whole other story.
I'm still trying to get the little toad to stay in bed. If I move the chair from the side of his bed, he literally yells for me till I go into his room and demands I put his chair back. Looks like another all nighter.
I appreciate you checking on me.

    Bookmark   June 4, 2008 at 3:24AM
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Lynn, I agree that you are not ready for Hospice service. It is not for people that intend to fight Death to the bitter end, no matter how it might happen.

I don't think you realize how much can be done in a hospital to extend his life. You will notice that I said EXTEND, not SAVE his life. With all his problems, he is already slowly dying.

There will come a time when his lungs will fill up and he won't get enough air to live. That's true. It will happen in a hospital too unless something else happens, like a heart attack, to take him out first. The difference is that in a hospital, he probably will be put on a respirator to force oxygen into his lungs. There may even have be stomach tube to feed him. Everything that can be done, if the doctor orders it, it will be done. They won't do it without the doctor's order. Since your doctor has already suggested Hospice, he may be trying to tell you that little more can be done. His lungs are already failing.

Talk to the doctor again. Try to find out what he would order done if he was to go to a hospital. You see, it works like this.....when the family insists on hospitilization, it is the same as insisting that EVERYTHING possible be done to extend life.

He will most likely become comotose and not know what is going on no matter where he is. But he will continue to live a few more days, maybe even just a few more hours.

Hospice care IN THE HOSPICE will make him comfortable during this time. If you cannot accept that making him comfortable during those last hours is better than making him go through extrodinary measures, then you are not ready for Hospice. I agree that you should wait until you are ready to accept the fact that nothing more can be done. He is dying.

So, it's your decision. You will have to just put up with him. If he yells for his wheelchair, let him yell. It sounds as if he could use some medication to calm him down.

Not all nursing homes are the same. Perhaps you need to take another look at them.

I wish you the best during this troublesome time. I cannot offer any suggestions other than you need to watch after yourself as well as do what's best for him. If you get down where you can't care for him, he will be put into any nursing home that has an opening. This may be the worse one available.

    Bookmark   June 4, 2008 at 8:41AM
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Guess I am not sure what the problem is here. Hospice, as I said before, was coming for my neighbor, the nurse did her thing and an aide came to bath him and various other things. When he fell one night and hit his head, blood every where, an ambulance was called and he was taken to the hospital. When is was discovered at the hospital that the head injury was more severe than firt thought he was sent home (after several days in hospital) and Hospice was right back. When I say sent home, it was the family that opted to bring him home and not have any surgery as the doctor's felt it would be too much of a strain on his system, but the option was there.

I believe in God and therefore I can't help but wonder if going to the hospital every time is what God really wants. After all, before medicine advanced like it has, where some one can be kept alive for years with no quality of life, people passed at home. Home, where they are comfortable, know thier surrounding and are surrounded by love. To me, this is what God wants, not artifical devices to keep us alive just for the heck of it. Do you really think that you are doing your DH a "favor" by making him make numerous trips to the hospital, putting him through the ordeal of the ride, the many exams, the test and so on. This has to put more of a strain on him than you may realize.

I guess you have to ask yourself if you are doing this for him, or for your own needs. If it is the later then you need to really think about it. God will NOT be uspet if you opt to let your DH leave this earth with dignity, at home. Bottom line, you have to face the reality that your husband is very sick and not long for this earth. Do you really think that you can keep him alive forever by artifical means. Sorry to be so harsh, I KNOW this is hard on YOU, but honey face the truth of the situation. No matter how many trips you make to the hospital with him, it is not going to make him well again.

Please know I am praying for God to do what is right for you DH and to give you the courage to face the situation.

Linda J

    Bookmark   June 4, 2008 at 8:45AM
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The fluid in the lungs thing is quite common and typically handled with lasix -- a small, common, cheap pill that works. I can't imagine hospice would withhold it. Is that what they told you?

    Bookmark   June 4, 2008 at 9:47AM
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He is allergic to Lasix. He takes Bumex twice a day.
It is he that asks to go to the hospital. Again, he keeps telling me he doesn't want to die. I respect his wishes. He's only 63, same age as I am, and is just not ready to go. Medicine for him has been a blessing, yet at the same time, he seems to think it's the answer for getting better.
With the dimentia, he truely does not realize how bad his heart is and only functioning at 20%. He does not realize his kidneys are borderline. He only seems to know if he goes to the hospital, he gets better. Not really, he just believes that. I think because he's still alive.
As to quality of life, how do you measure that? He hasn't been able to do much for years but he has things he enjoys. Love shared in our family is very important. Hearing the grandchildren talking about all the exciting things in their life and most importantly that they love him.
What I want is for God to be the one to decide when it's his time, not me. Life is a precious gift and I have no right to make a decision to cut it short. I guess I feel if I get Hospice they will keep him comfortable but no measures to keep him alive. If he can only enjoy a part of the day, or as little as 5 minutes, that is his God given right. We all have bad days we'd prefer not to go through and are glad when the day is over but that doesn't mean we should give up.
What will happen, I can't say but you all have given me a lot to think about. I know he'll never get better, only worse. In my heart I know he loves what little he can do even if it's only loving on his puppy or looking at the lilies or seeing the fish in the pond, or seeing the new colt. It's what he can enjoy of what God created. His health has forced him to stop and smell the roses - even if for only a short time.

    Bookmark   June 5, 2008 at 8:14AM
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Why not TRY Hospice, you can see how it goes and if you are not happy, or you feel he needs to go to the hospital then you can null and void Hospice. You are NOT LOCKED in with them. The doctor, when he suggested Hospice, was trying to tell you that no matter how many trips to the hospital are made, the end is near. So give Hospice a try and like I said, you can cancel them at any time.

Oh, one more thing, it is always GOD's choice, never is it totally in our hands. YOU would not be making the choice of life or death, God will.

    Bookmark   June 5, 2008 at 9:03AM
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Still thinking of and praying for you, pfllh.

    Bookmark   June 7, 2008 at 8:45AM
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I'm new to this site. In addition to dementia I'm guessing your husband has congestive heart failure. I wish I found this site a few years ago because I became the sole caregiver for my mother after my dad died (2003 until August 2007). My mom has COPD, congestive heart failure and emphysema, plus many emotional problems. Those years were probably the worst in my entire life. Two months after my divorce is when my dad died and the life that I thought I would start for myself ended. In addition to caring for her I am self employed. I will spare you the rest of the details, but I want to tell you that HOSPICE SAVED MY LIFE!!!!!!!!!!!!!!

Last June my mom caught a cold which really did her in. Through her medical insurance she was in a program called Home Palliation - a step before hospice. The Nurse Practitioner in charge of my mom was not the top of his class (and quite frankly I used to refer to him as Jack Kevorikian)and he had my mom taking so many meds that she was just getting worse. Ends up I get a call telling me it's time for Hospice. I was devastated. Two days before I met with the Hospice people, my mom overdosed on morphine and ativan and she would have died had I listened to the idiot NP(my friend Kevorkian)and not called 911. The next six weeks made the previous 4 years look like a picnic.

With the help of the Hospice nurse, social worker and chaplain I was able to get better care for my mom and respite for myself. We live in California and there are state regulated "Board And Care Facilities". These are in a single family home and, per our State laws, they can have no more than 6 residents. The home I found for my mom is about one mile from her house and there are 4 attendants to care for the six elderly residents. During week six of my M's stay in the B&C, my M ended up going to the ER 3 times in a 48 hour period. Trip three she was admitted and then stayed for one week. She came home and Hospice resumed their care of her - NOT ONE PROBLEM.

Her condition has actually stabilized and improved in Hospice. At her re-evaluation it was felt that she could graduate back into Palliative Care (SW told me that they stretched the truth to keep her in H and away from Kevorkain's program). She is given ALL the meds that are required to keep her alive. THEY ARE NOT AT ALL RUSHING HER TRANSITION. Hospice pays for the following: her oxygen, diapers, blue chucks, hospital bed rental, her wheel chair, additionally they order everything and it is delivered to the facility. As a bonus she has weekly visits with the NP, SW and Chaplain and the SW and C are also available for me. The only thing that I pay for is her home.

I urge you to give their services a try. At the very least it would lessen your current burden and allow you to take a breath. I'm sure you're probably mentally and physically fried. If you don't like the way Hospice works for you, you can always discontinue it.

I wish you the best.

    Bookmark   June 8, 2008 at 1:29AM
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I have come to an educated decision. A little more background.
My husband was taken the last 2 times to the hospital in our small town. The first of the 2 times he was having trouble breathing and asked to go to the hospital. He was in a regular private room on a heart monitor. While I was visiting, he started gasping for air and and changing color. I got the nurse and the doctor came in and put him in ICU. He was put on a ventilator.
The hospital system we have here and in Montgomery, Baptist, have a new procedure. A group of doctors are with the hospital and are under contract. To be able to care for patients, a doctor outside the group must have a contract for consultations. They called in a pulmonologist and it just happened to be the one our cardiologist called in for a consult previously in a Montgomery hospitalization.
The doctor had never treated my husband before and only had him as a patient as he was admitted through ER and read what was written and on the Baptist records. The computers are linked where they can look up a name for the medical history. She suggested Hospice while he was in their ICU. In talking to the pulmonagist, I told him they had told me he couldn't be moved as I wanted his cardiologist to care for him. He told me he could be moved and so everything was arranged and off we went to Montgoery. They immediately took him off the medicine that kept him asleep all the time. He started improving and his oxygen level went up where he came off the ventilator. One more day and he was taken off oxygen. Two more days and he went home.
The next time just less than a week later, he was having chest pains, nitro didn't help so he asked me to take him to the hospital. He was in a regular room, had a nitro patch, morphine and oxygen. Not sure what else. Stayed 3 days and went home. While there, the nurse and socialworker talked to me about Hospice. It was my understanding all of them, including the doctor that signed the papers had consulted with our cardiologist in Montgomery.
A couple of days after he got home, Hospice came to the house and talked to me. This and when I talked to their office is when I was told, they will provide him with all kinds of needs, and stated them, but no heroic measures. They have their own doctor on staff, nurses, and assistants. To go to the hospital, I would have to request it and revoke the contract with hospice. Then when he came home, reinstate hospice. If done more than once, medicare would question it. Unknown as to that outcome until it was done.
I had questions I needed answered. I had called the cardiologist office to talk to the nuring assistant that had seen Phil last and said, I thought, we agree to Hospice.
What had changed that they had not discussed this with me previously yet agreed now? In a 2 week time frame, she returned none of my calls.
I finally called again and cancelled my husband's protime test. They asked if I had an in home service that would do it or a lab that would do it. I said no. I was asked to wait and I did. A nurse at the office got on the line and told me she had talked to "D" and she said she only got my messages for this week. I told "T" I hadn't called this week as I gave up trying to talk to "D". "T" stated "D" was confused and didn't know what I wanted as she thought she had explained everything. DUH if you don't know then talk to the person and find out instead of not returning calls.
"T" kept asking questions and I told her what had transpired and I had questions and could not get that help. She kept wanting me to talk to "D" and I said no, I have no reason to. "T" asked me if I was angry and I told her I was very angry, frustrated, and felt abandoned by them. She asked if I was going to bring my husband in for the tests and I said no. She said I'd have to stop the coumadin then if not monitored and would have to report it to Dr. "W". I told her fine but I hoped she'd give him ALL the facts that brought us to this point. She stated she would.
Later that day I got a call from Dr. "W". He has cared for my husband for years and is highly respected in his field nationwide. Result from the conversation. He was just told about the calls not returned, NO he had not been consulted at all about Hospice. WE discussed my husband's health of what I understod and nothing was incorrect or incomplete. His opinion was that medically Hospice was an option but psychologically no. He felt it best we wait. I agreed.
If I had been told all the facts and that his cardiologist had not been consulted, I would not have talked to Hospice till I had talked to Dr. "W". When I called Hospice, he was very surprised that those 2 doctors had not consulted Dr. "W". He had treated him for years and both of them had only seen him once during the 2 hospital stays.
I beleve those 2 doctors overstepped their authority and I was misled.
I am not going to use Hospice. I am checking into sitter services recommended by Hospice and they are certified. My daughter is helping that if I can get my doctor appointments on a Monday, she will spend her day off with her daddy and I'll be able to see how much my kidney disease has progressed, find out if the ventricular in my brain is letting spinal fluid seep out into the brain yet, what to do about the bulged discs as the pain is much worse and getting more difficult to walk - I'm getting tired of falling down. HELP I can't get up!!
I feel I have all the facts and the load I carry is much lighter with this decision. I prayed soooo hard for a sign or something to make the right decision.
This has been VERY hard with a lot of tears, anger, feeling alone, and pure frustration. You all have been wonderful, patient and so kind to me.
I'll keep checking this forum as perhaps someday I can help someone as you have helped me. THANK YOU

    Bookmark   June 9, 2008 at 4:57AM
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dear Lynn

the best advice i was given here is to make sure that you take time for yourself! do you know that after being a widow now, for amost 16 months i am still exhausted. (and please do not take this the wrong way i am now 52 years old, so i think i may be the "baby" of this fine group of friends that i have made.

when Al went into the hospital for the last time and was put on a ton of machines and we were told that he had a massive stroke, i in a flash asked them to turn the machines off, this was one of the hardest decisions i have very made in my life, so a little after 5 pm the machines were turned off (or we could chance things), we matthew(son) carley (daughter) and i were there, (we sent the dear sister in law home. and i say that loosely) and Al passed away very peacefully just before 9 pm.

i (and the kids-- well one turned 25 and one will be 20) with no help from his family what so ever. he was bed ridden for 10 years, he was always thanking us for taking such good care of him and for sticking by him, ppeople say you must be so relieved for him to be gone and that you can get on with your life, i tell them no that if i could havechanged things around i would. but i DO NOT have anything guilty to feel about what so eve. Al was to live at long term care just down the street from us, but i guess i decided that he would live at home, but after seeing how well he was treated at the hospital in ICU the kindess and gentleness of the doctors and nurses gave him and us while he was still with us and even after, i am very satisfied with things, but then again our medicial system is different here in Canada.

ps happy father's day to any dad's out there.

    Bookmark   June 15, 2008 at 12:58AM
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Thank you. I do get tired, stay tired, dragging my hiney, etc. Our 3 daughters are all grown and have their families. I really don't want them to feel they have to take care of us. My youngest told me the other day that at some point with my health problems someone would hve to take care of me. I told her" I DON'T THINK SO"!!! I'll get roller skates or something but I will take care of me.
I remember your posts and my heart went out to you. If it comes to that of life support, Phil has said no. He does not want machines to keep him alive when he's not doing anything on his own. That's not living, that's existing. We believe that if your body is not functioning, that is when you take the hand of God, not when the machines are turned off.
I hope you can find solice in that Al is free to walk and do, not bedridden anymore. When there is that binding love, he is not really gone, he's in your heart, your children and in your memories.
Take care

    Bookmark   June 15, 2008 at 5:38AM
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