It has been a while since I have written on the board. I do try to read the discussion. It was two years this week when we placed Ralph in a home. The first year was ever so difficult and we had to move him three times. He has been in the same small care home for the last 18 months. He is well taken care of now and I am pleased with his care. It is heartbreaking to see him now. The last three months have been a real downward spiral.
I took a fall 5 weeks ago and broke my upper arm in 4 places and hurt my shoulder. It has been a slow recovery and today was the first time I have been able to travel the 20 miles to see him. He has failed so much and not sure how long he has. He has not known me for over a year but I did get a small smile from him today. He held on to my son's hand for a while, who he has not seen in several years. It was lik.e he knew he was someone special.
He is off almost all meds now. The aggitation is gone and he is content and co-operating with his caregivers. He has lost so much weight and looks so frail. It seems like he is slipping further away and now I am realizing I could lose him soon. But who knows how long he can last. I am feeling very sad tonight with the realization that our 8 year journey with AD may be coming to an end. This group of caregivers means so much to me and just felt like sharing my pain with those going through this journey.
Darlene my husband has been almost comatose for months. He chokes and turns a terrible shade of purple-and he keeps going. My husband has not known who I am for years. He is getting good care in a dementia facility and that is all I can do for him. I feel I lost him a while ago. I share your pain.
Darlene C: Thank you for posting your circumstances and feelings today. I went to my DW's neuro counselor today, because she thinks I need depression medicine. But, her part of the conversation was spent telling me that I should discontinue my DW's cancer treatments. What she is saying is that my DW is going to end up where you DH is now and that I am going to go thru the same things that you have been going thru for the last several years, so why not let the cancer do its thing.
I really can't disagree with her conclusions because my DW has been fighting cancer for 12 years and we are losing the battle. Her Onc says it is not curable and she will have to have treatments the rest of her life. It has now spread to her lungs and liver.
I find this to painful to discuss or even think about. I never thought I would have to make a decision like this about someone's life, especially my wife of 55 yrs.
Oh, Dean, I am sorry for the pain you are going through as you try to make the best decisions on the care of your DW. I think I know what I would do but it is too easy to make that comment not having walked in your shoes. I believe you will make the right decision after you work through the pain of thinking about it. I pray that you find strength and peace. Hugs
dean, go to the Hospice site and download their booklet that was written by a Hospice Chaplain. I did for myself and 3 children. Several months ago I told the kids if he had to go to the hospital I wanted to DNR him and they had no idea what that was. Then he went in for a UTI and I told the Nurse DNR. When the girls came, they were hesitant and wanted to wait because "he still knew them" so I had the DNR lifted from his chart. After he was dismissed from the Therapy Hospital I was more than ever convinced he had no quality of life other than he did know us and could talk to us in partial sentences. He was drastically set back by the Hospitalization and we worked with him to keep him on his feet. He still knew us, could partially feed himself and was continent, could walk with a walker - limited. He could not read the paper, nor really enjoy the TV, radio or anything other than having family around. He was a big fall risk and we had to hold to him when he walked with the walker.
I gave the booklet to my 3 children then - to read. By this time the oldest was in agreement with me but the other two were still struggling and I wanted them all on board with no regrets. They read the booklet and agreed we should do the DNR when we enrolled him in the Hospice program. We do not feel guilty although it was a very difficult decision. Each of us agreed if we were in the same position we would not want to continue. Less than 3 weeks later he passed at home under Hospice and our care. His passing was peaceful and painless as near as we could tell.
You can tell what my decision would be, but like Weejun said you need to make the decision that is right for you and not feel guilty.
To you all-- I am so sorry to hear of your desperate times. It is such a push-pull situation, impossible to feel comfortable with any decision you make. I know from experience that you will second guess yourself over and over, it's the nature of the beast. Darlene & Blue, you are doing all that can be done, be kind to yourself. Dean, you ask what we think. I cannot advise, it's too personal and painful, of course. However, I would talk with her doctor, try to get all the possibilities, how they will affect your DW, the doctor has the experience and seems to want the best for you as well. Blessings all.
Dean, if my husband got cancer, I would be grateful. It would be a quicker ending than the slow death of AD. With cancer, whether AD is involved or not, you have to make a decision when is enough enough? I know older people (over 70) who have gone through chemo and radiation but the cancer kept coming back. They finally said 'enough is enough'. In high school a friend was diagnosed with bone cancer. Unfortunately, she had it for almost a year before diagnoses. She had her arm and shoulder removed, chemo, radiation yet it was still there. She finally at the age of 20 said enough. She was ready to go home to be with her Lord. So, it is not just the older folks, but young ones have to decide to.
Question to ponder: since AD will eventually kill her, which would be a more merciful: continue the cancer treatment and let the AD take her, or stop the treatment and enjoy what time you have left possibly with better quality of life?
Prayers are with you as you ponder this very difficult decision. Sounds like the doctor was thinking more of your wife and gave you some wise advice.
I've had several friends who've made the decision to stop cancer treatment on themselves; they've been in perfectly sound mind and, with palliative care support, have died peacefully.
I, too, have my husband under palliative care only (although I did give him antibiotics for his UTI, remembering how uncomfortable UTIs had been for me!) and wouldn't even consider radiation or chemo for him. And quite possibly not for me either, once my caregiving days for him are over. We all do die, and the thought that I might end up mentally incapacitated but kept alive with last-ditch chemo or radiation and their complications - is far more scary to me than simply letting nature take its course.
I agree with Charlotte. When I started my husband in Adult Daycare, I had to sign whether to resuscitate if he stopped breathing...with regret I signed no.
Dean, I cannot advise you on such a personal decision, but what I think you should weigh is whether the treatments are harder on her than the benefits gained. My thoughts and prayers are with you.
Dean..you need to follow your heart and determine if the treatments outweigh the benefits. My dw has had breast cancer (two lumpectomies), followed by radiation. The radiation seemed to have caused her many other problems, and seemed to enhance the Alzheimer's symptoms. At this point, we are no longer concerned about the cancer or its treatment. (In actuality, we are actually cheering for the cancer, and hope it wins before the ALZ). If there was a treatment that would cure both at the same time, I would definitely consider it, but weight the pros and cons, I wonder which is better...death by cancer or death by alzheimer's. I would prefer the quickest and less painful of the diseases. I hope I do not sound fatalistic, but we have chosen (my dw, myself and my childern) and her pcp to ignore the possibility of cancer, and to do nothing about seeking any treatment. After all, do we really need to cure any other disease so that she can enjoy full term Alzheimer's???
Phranque, I have to agree with you. My mother decided on her own to stop her chemo. She said, and she was in her right mind, that there was no quality of life for her. How much less quality of life is there when the mind is affected, also. This is an extremely personal decision, which, if we were smart, we discussed with our LO while he was still thinking clearly. We are in a position, now, where everything is up to us. and we have to make the decisions which are comfortable for us, and in our thinking, best for our Loved one.
Chris- fortunately my dw is still capable of making stupid decisions, and I have her support when I make stupid decisions. She is in her right mind ..(I think it's the left side that has problems). So making stupid decisions really is our stong point....we are getting better at it every day. There is a fine line between genius and stupidity......genius has its limits.
how right you are again phranque, as long as both you and you lo agree, no decision is wrong where this disease goes. As much as we caregivers take on, I am beginning to think we have no limits either.....lol......if we listen to our lo's.......
Dear Dean: this is a hard decision to make, it is something that you have to think and pray about, and know that you will have peace of mind with what you have decided... My prayers are with Bluedaze and Darlene.C.. This is a terrible sickness...I hate it more each day...Hugs to all Rosalie
Darlene C: I don't want to go thru what you are going thru right now. My heart goes out to you. That is why I asked the question. What they are telling me, plain and simple,is that I can avoid it.
To the others: Thank you, Thank you, for your willingness to send me your thoughts. If you think of something else, please send it too. In the meantime, my plan now is to wait until we have our scans and then make a decision. The Onc says that when it starts growing again (and it will) that that will be a signal so thats what we will look for.
I wanted to clarify one more thing. When this first came up back in the summer, I talked to our two children about it. You would think that I was speaking a foreign language. They were astonished and thought that I was losing it too. I understand because when you first hear the suggestion, it is just unbelievable. I'm not going to tell them about this latest suggestion (from a complete different source) until I am ready to make a hard and fast decision. But, the information coming from you folks, with what you are going thru, is a lot more meaningful and I know it comes from your heart. So, that is what I meant when I said that I didn't have anybody else to ask. Sorry if I didn't make myself clear.
To all of you, I am so proud of the strength and dignity you show. You are all such an inspiration. What we are really trying to do is to help our loved ones die with dignity. This is one of the most difficult paths in life. May God Bless you and keep you in His care as we all travel the road to heaven together. I do, truly love you all. Arms around and around, Susan
Typing with my left hand (one finger) is tough and i keep losing mY message.
Dean, oh what a difficult choice you have to make. Your children do not have the day to day care of their mother. They probably think of her the way she was and not continuing treatment is hard for then to understand. It is your decision to make. What would you want for yourself? None of us want to be a burdon, what would she want?
This one thing Ralph hated - the burdon of taking care of him. He made me promise that i would put him in a home when it became more than i could handle. This did make it easier to place him. I am feeling some what better today. It helped today to sit with him and hold his hand. .He is about the same and i know he could be this way for while.I pray for strength no matter what happens. i will feel pain and sorrow going through this stage. i just do not want him to suffer and am so thankfull for Hospice care. My prayers for you Dean and your LO.
Thank you for updating us. You, along with a thousand others, must be a precious person. I wish you stregth and peace.
I always think of something that I forgot to say. When I make this decision, I will probable be chastized, criticized and even hated by my DW's family. When that happens, I know where to turn for understanding. You wonderful people.
We will be here for you. It will be hard for you, but do not be hard on yourself. You will know that you have made the best decision under the circumstance.
Dean, I have a friend whose husband had a brain tumor. The doctors gave him just a few months to live. The children insisted that he try chemo. He died just a few months later as the doctors had said, but those months were made more unpleasant. I think a lot might depend on how unpleasant your wife's treatments are and what her quality of life is like when undergoing the treatments.
We often feel that, just because we have the ability to do something, we must do it--just because we have a treatment available, we must use it. There are times when less is better. Technology is not always our friend.
My DH has said many times he does not want to be on machines or anything that would prolong life. We have it in his will and POA. He also does not want a service whenever he does pass so I will abide by that.
Please read this book. You can find a full pdf text of Hard Choices for Loving People if you roll down a bit on this page. Or you can buy the book from Amazon.com through Joan's main page.
http://www.hardchoices.com/
And dean, get your kids to read the book too. The author was a chaplain for a hospice organization that mainly treated cancer patients. You get information from someone who has dealt with the ethical issues of not treating terminal patients and how to make the choice.
You also want to read just about everything from this site. The particular page I'm sending you to is the meat from the Hard Choices booklet, where he talks about the fact that in many cases the choice to treat is because the wrong patient is being treated. The caregiver can't let go for all kinds of reasons.
http://www.hospicenet.org/html/choices.html
Whether we like it or not at some point anyone caregiving a terminal patient is going to be making these choices. The one advantage to dementia is that we can figure out what we are going to do well before the final emergency. When I made the final choice for my mother there was no hospice available for her and I had 30 seconds to decide what to do.
Dean, if your wife was her normal self, what would she want? Did you ever have any discussions on that and could you use them to help you make the best choice for her?
All through my husband's disease, I have worked to do things as he would want and not what I want. This sometimes meant that I was not doing things in a way that came naturally to me. That was okay because I was following his wishes.
Due to our age difference, we had many discussions over the years about what he wanted. Considering where we are now, I am so grateful that we did that - it has helped me a lot.
I will say that when my husband had pneumonia twice a year and a half ago, I chose to treat - he was still able to walk and could talk to me. If I could go back and do it again, I would let him go. He can no longer walk, talk or feed himself and this is not what he would consider living.
Starling's point about the caregiver (me) not being able to let go for all kinds of reasons was very true of me at the time. I didn't know I could let him go. My brother-in-law was in the hospitol dying of cancer at the same time and most of all I wasn't ready to let him go. I think if something happened now, I am more ready and could let him go.