I am so sorry to read about Meg's mom, I learned so much from reading her posts and found strength and comfort in the wonderful way she cared for her.
I havent posted in awhile. My mom has been in NH home for a year and half. She has had dementia/alzheimers for about 4 or 5 years. 10 days ago she was at the point where she did not speak but seemed to be aware of what I was saying and would sometimes smile or nod. She doesnt walk, is completely incontinent and her muscles are begining to contract. She also has diabetes and high blood pressure. She was sent to the hospital for severe anemia and given a blood transfusion, she was then given IV antibiotics and IV fluids. She looked horrible, was all bloated. Long story short-the Dr said she probably only had a few days to live. So we brought her back to NH for "Care & Comfort" orders. Well she seemed to rally back in NH and was actually talking in 3 or 4 word sentances. I couldnt believe it!! For 2 days she was like a new person. It was a gift.
It has now been 8 days since the Dr said she was dying, she is not talking again, not really eating unless we manage to slip a bite into her. They are giving her morphine for the pain of her muscles.
I am conflicted because I don't want to throw in the towel if she isnt really dying, but if she is dying I want to take a leave from work and be with her. I see her everyday now but I am still working. I cant sleep at night because I feel I should be with her. My stomach is in knots.
The nurses at nursing home don't seem to have any answers for me. They say she could go to sleep tonight and not wake up but that they don't think the Dr was right about the "few days"
Lori, to answer your question.... you don't and you will not. That is not something anybody can answer. The nurse is absolutely right. This is on her time and not your time. The best educated guess... is just that. It is a guess.
I will say that it is not unusual for someone to come around or revive even though they are in the dying process. Dad woke up and wanted eggs. He lasted 3 more days. Some go quickly and unexpectedly while others linger much longer than expected.
I do not consider comfort care as throwing in the towel. There is a time to be aggressive but there is also a time to just let it be what it is. With Dad, and now with Mom, I always looked at the benefit of the treatment to their long term quality of life. She is non ambulatory, incontinent, with muscle contraction, and all the other problems that come with those conditions. She may improve slightly or be able to speak a few words. But what is her long term prognosis and her quality of life? I don't see it as throwing in the towel. I see it as giving her back control.
Cherish these days. If you want to take a day off from work just to be with her then do so. It doesn't matter if she is going to be here another day or another month. Hold her hand now. If you should get the opportunity to do that again and again then you are blessed. If this would be the last time that is ok too.
We spend way too much time wondering and worrying what tomorrow will bring. We need to spend each day as if it is our last and do the things we tend to put off... the important things.... like holding Mom's hand and letting her know how important she is
I am so sorry that the doctor said she was dying... The nurses are right, you will never know. Also, my FIL had been through many crises and yet he never died. His home care nurse told us at least once that he was dying last year and at least 2 times about how long he would live. This is wrong actually because we are not God. Sure he can tell you about her stage (end stage maybe) but even the end stage has 1 to 3 years depending on how strong she is.
I don't think it is like throwing in the towel - comfort care is not something minor. Hospice is not just about throwing the patient to the deathbed... It is actually more subtle and I think comfort care is actually harder and more serious because you need to consider how to make her comfortable when she cannot talk. It is not easy. It is actually the hardest time for all. It is not about throwing the towel. Rather, you can cheish this time to be close to her. It is a good idea if you want to take off your time from work. Even if she lives longer, you won't regret it.
They did mention hospice as an option if I wanted it. I feel the nursing home where she is at is taking really good care of her and know her so well since she has been there so long. I don't feel I need it at this time.
Last night she was much worse than she has been. I don't know if it is the effects of the morphine or her actually condition. I have given it up to God and taken everyone's advice to just hold her hand and be there for her.
Thanks for all your advice.
The following user gives a hug of support to auntloralie: ninamarc (08-05-2011)
Where my FIL is also offers palliative care. Hospice usually has a place of its own. But lots of homes also offer their own comfort care plus palliative care. I think these 2 terms are similar at times.
Sorry she is worse. I think it would be best if she can have palliative care or comfort care in her NH.
Lori, Hospice offers so many services, not only for the loved one but also for the family. Dad's caregivers were excellent and he stayed right where he was with Hospice coming to him. The facility care givers loved him and took great care of him. When Hospice came in they did not "take over" but complimented the care Dad was already receiving. Hospice was just more knowledgeable of the dying process because that is their expertise. Every thing they did was coordinated with the facility and the family. I also used their doctor who would come in and see Dad rather than having to take him to the doctor. At the time of his death Hospice took care of everything. They did not go away but stayed in contact with me for over a year. They provided much needed support and grief counseling to me. I can't speak highly enough of the care and support I received
I ma sorry your Mom is not doing well. Yes, at some point you just have to turn it over to a higher power. Just be with her while you can. These moments will become precious. Know you and your Mom stay in my thought and prayers for the strength you will need and the comfort you want for her.
Lori...first of all thank you for the kind words. They are much appreciated. I am just now getting back on here and checking on everyone else and I see you are in crisis and also that you haven't checked in since the 5th. I hope that whatever has happened, you are ok.
For me, I had Hospice for mom and they came in and handled everything...guiding me through every step of the way. We got the call and I got to mom at 8 on a Thursday night and she died the next morning, with me holding her hand, at 6 in the morning. What a gift that was. To be with her. Not every one may feel that way so you do what you think is best for you.
Please check back with us and let us know how you are.
Deb and Megan are talking about home hospice. A home hospice service in the NH is the palliative care in the home.
Anyway, the service can provide lots of good things for the elders and family.
We are not there yet but maybe soon next year.
To look at Mom you would not think she was "ready" for Hospice. She still walks (wanders) without assistance and feeds herself. But she has a terminal disease in the later stages accompanied by weight loss. I actually feel that I waited later than I should have for Dad. It is not only for the bed ridden in the very last days. There is one in Mom's unit that has been on Hospice for 2 years. Yes, it is the same Hospice that you can use in your home only I am using them in an assisted living attached dementia locked unit. I get a doctor that will make in home visits when necessary, visiting nurses as needed (twice a week for Mom), a social worker, a volunteer that visits with Mom once a week, and a chaplin. That is 5 visits a week from professionals that know what they are looking for.... and a huge support for me from a team of professionals that understand. It also means that when Mom falls, the facility calls Hospice! They respond with nurses (and doctor if needed) and we have so far avoided three ER visits. That in itself is worth it all! Just needed to say, it's not just for the last weeks.
Yep...me too...we got Hospice involved mainly to keep mom out of the hospital!! And it worked...she never had to go to a hospital again! And yes, having all those people visiting is an added bonus...extra eyes on her when we couldn't be there. And they are such good caring people.
I've gotten three calls from them since mom died..just to check on me.
Meg, the after care is wonderful. A year after Dad's death they were still in touch with me by mail, email, and phone. Actually I never lost contact with the nurse or the social worker. Dad's social worker did a fill in visit for Mom last week and I was thrilled to see her again. I agree they are such wonderful caring people
I feel the few days that I talked about where my mom was bright eyed and talking were a gift from God. I can't even explain how special those days were. It just so happens that my sister-in-law was visiting that day and she took some great pictures of me and my mom, so I have those as a remembrance.
Although I am so sad that she is gone, and I am going to miss her terribly, I am comfortated by the faith that she has been reunited with my Dad.
Thanks to all of you for the support, advice, thoughts and prayer. I will continue to check in to this board to see how all of you are doing.