My DH has had ALZ. for 8 years. He is now 82. I'm 68. Our living wills were signed long before any diagnosis or symptoms of ALZ. My Aunt also had a living will, signed a long time before she got ALZ. She lived with us for 1 1/2 yrs. before the NH. She had a stroke and her dr. had a tube feeding inserted in her stomach, clearly telling me it was only temporary so she could build up some strength. I was stupid enough to believe him. Weeks and weeks went by. Her ALZ. condition didn't improve, (duh). I felt rock bottom guilt because I had allowed them to insert it. I've never prayed or cried so much in my life for the decision to take that tube out. Out of pure love for my Aunt, I told the dr. it had to come out, knowing it meant her death, since she couldn't swallow. But it was done out of love for her and her final wishes. My Alan said numerous times after that he did not want a tube. That's what his living will also says. I truly believe I can stand up to the dr. for my Alan's sake and not allow it. He is in the beginning now, of having some trouble swallowing. Please God, give me that strength to say no feeding tube because Alan doesn't want it.
It is one thing to use a feeding tube for someone who will get better or has a life-long chronic condition. However, that does not apply with Alzheimer's and most other dementia when the end is near. The brain is shutting down the body and that includes swallowing, digestion and elimination. To force feed someone when their system is not longer working to their needs is useless and cruel. Nature will have its way, no matter what we do, the kindest thing you can do is not stand in the way and make things worse. At the end, my husband had trouble breathing. I could have put him on a breathing machine, but I knew what he wanted, papers had been signed. For his sake (and the rest of the family), I chose not to do so. He died peacefully with an oxygen mask to ease his passing, it was his time, I have no regrets. You have the same strength, Carolyn, it comes from love.
Unfortunately some people in the medical profession will refuse to obey living wills, believing that you must do everything possible to keep someone breathing. It takes a lot of planning to die at home.
One the other hand, there are doctors and nurses who do not want to prolong life when death is clearly coming. When my father was in the hospital for the last time, the attending doctor reviewed various options and none looked helpful and were possibly painful. He described a feeding tube as a barbaric device.
Do not feel bad if a doctor told you it was temporary and it wasn't. But keep in mind that legally it is easier to refuse a feeding tube than to have one removed.
Carolyn: If that is what your living will states, it's enforceable. My PCP provided me with DNR orders which I had posted adjacent to my DW's bed, on the refrig and several other convenient easy access locations. Our local EMT's recognized the forms and strictly adhered to the terms on the document. The most difficult thing is to stop and resuscitation once started by and EMT or at your Emergency Room You must be pro active and strong don't let them get started!
Amen Marty, my best friend had to stand with her back against the hosp door with her brothers and sisters to keep the nurses and code team away from their father. They had all the legal paperwork and their dad was suffering so,. but the hosp had a policy that all "codes" had to be responded too. I am adamant everytime we go to the hosp for any reason that they all know and see and copy the living will and DNR. I keep a copy in my purse at all times.
I was pleased with an ER doctor who was examining my wife for severe back pain. He would mention a possible diagnosis and then ask me if I would treat it if that were the problem. If I said "no", he did not test for that condition. He only looked for things which I would agree to treat. That was 3-4 years ago, and she is still going strong physically.
When my dh was in the final stage of his life, the Hospice gave me three choices. To give only water, to give food and water or to give neither food and water. I was told regardless he would be gone within two weeks and if I withheld both food and water he probably would not last more then 4 days. That is what I chose to do...and he passed peacefully in 4 days. I have never regretted the choice and I do believe it was because I knew it would be what he wanted.
The one thing good about AZ and the final days is that you have time to prepare yourself for the loss. Maybe years, months or at least days. It seemed to me to make the grieving after he was gone much easier then I thought it would be. I knew I had been a good caregiver and had done everything I could to keep him comfortable.
Of all the miracles that have come out of modern medicine, why has it become so difficult to 'just die' ?
Most people involved in medicine are young and healthy. The docs & nurses who have become old and infirm have all long retired. People instinctively react to a situation by saying "How would I want to be treated?" Young, healthy people who have no chronic pain or deficits cannot imagine ever not wanting to have everything done for them. They dont understand that there are times when a natural death is the next normal stage of growth and development.
California law has added a new phrase to the DNR type language: "Allow Natural Death". Much more appropriate to the situation than 'let them die' which is inferred from the Do Not Resuscitate phrase.
Carolyn you know in your heart what you (and your spouse) want. Sadly you may have to scream it loudly when it becomes necessary.
I trust the strength will be there when you need it. Jim
JudithKB, your decision was probably the best. I have been reading that attempting hydration after the person stops drinking makes death less pleasant.
One key to dieing naturally is to not go into the hospital. Once you call the ambulance series of events get started. My FIL had to struggle with this issue when his wife was dieing, he did not want her to die in a hospital. After consulting with the family doctor for a while did he take her to a hospital for pneumonia, the doctor felt that she would survive and be able to go home. And she did, even though we thought our visit to her in the hospital would be our last visit. She died a few months later at home, she continued to have aspiration problems after leaving the hospital. DNR notices were placed all over the house, the homecare nurses were instructed to not call an ambulance, and she was on hospice.
It was much the same with my husband, and I made the same choice as you. Hospice did provide what I can only describe as a stick with a foam rubber like top that was lubricated I think with a glycerin solution. He was talking a lot, well, not really talking. Anyway, this was to moisten his mouth and lips.
Carolyn,
My husband also prepared a detailed living will well before any signs of FTD. A significant part of it was "fill in" and so he indicated his wishes in his own handwriting. Even though he later executed a dpoa, I was so glad I had held on to that original living will. It is still comforting to know I did what he wanted.
My husband is in a similar state. He's in end stage and a week ago choked on water. For a day he refused food. He rallied after that and started eating agian on Christmas. Today he choked twice when the nurse gave him thickened liquids. I plan on talking to the Hospice nurse on Monday to see if we can discontinue hydration & nourishment. His advanced directives say no food or water during the death process which we are clearly in.
It's never easy. I'm sure the dr's will honor your decisions.
A DPOA does not cover medical decisions. You need a Medical Power of Attorney (provided for free by doctor offices and hospitals) to have the power to make medical decisions for someone else. Living wills and advance directives are very important.
Trish, Such a difficult time in your and your husband's path but aren't you very thankful that he has the advanced directives and has actually made the decisions for you. We do not have Hospice yet and don't know if I'd recognize the point when I should have them. Maybe you can give me some insight as how you reached that point.