TO Kate & Margaret When Journey Ends at Home
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Isisman,
We don’t have any hospice facilities in our area either. That’s why I would plan on keeping Tom at home. It’s either that or a nursing home and that’s not going to happen. We do have workers that will come and help but I’m not sure how much they do. It is very difficult to say the least but you did the very best you could and I’m sure your husband appreciated all you did for him. Take care, MaryI’m sad because in my state there is no 24/7 hospice care. they come in for work requests/orders and leave. No facilities. I had no choice but to be HOSPICE myself, Granted my husband never had better care or company! We took turns holding his hand, turning his positions, sit up, side of bed, back in bed, on side. Long hard days but he was never alone until he sunk into that deep sleep till he passed. I wish I felt I could brag about Hospice as you all do, but I do agree spending the last week to the last second with my husband, although very intense and scary for my kids, he was suffering greatly and it was so hard but at least we were all together in the end. I would have been very upset if he died in a facility and I wasn’t there. God bless you all. I most likely will not be back on line again.
Lainy,
Your words are so beautiful. I printed a copy of your post to keep as a gentle reminder when the time comes and I need to read it over and over. The loving family on our discussion board continues to be such an inspiration to me.
HUGS TO EVERYONE…
NancyLainy: Thank you so much! I conveyed your words to Tom and he was all teary eyed, he wants so much to spend his last days at home. Not sure if he is at that point yet (we’ve not stopped KICKIN’) but when his time comes we will be keeping him at home.
I know that Hospice will help me through the rough times and that in the end, it will be for Tom that I do this, so it will help me get through it all.
Thank you again from the bottom of my heart!
HUGS,
MargaretHi all,
Just had to weigh in on this one. Mom discussed it with all of us when the oncologist confirmed what I had told her. – (that I thought the next visit would be to tell her that there was nothing else left to pursue as far as treatments went.)
I had already approached Hospice and made all the arrangements so that Daddy wouldn’t have to take on that task while losing his wife of 58 years.
My Mom, Dad, sister and I decided that we would keep Mom at home unless something happened that we could not keep her comfortable and pain free. If that happened she would be admitted to the Hospice hospital in Greensboro. A beautiful facility.
Hospice was so great. When Daddy felt uncomfortable leaving her to run errands or to the grocery store…Several wonderful women from hospice would come and visit for an hour or two different days of the weeks giving Daddy a couple of precious hours to shop, pick up meds or just go for a few moments alone. My sister lived an hour away and I’m almost 3 1/2 hours away so this was a blessing. At the initial visit, they gave Mom and Dad a notebook with everything they needed to know. There were phone numbers, names of our “team” and helpful suggestions.
As the illness progressed those last weeks, we had a wonderful nurse assigned to us that Mom loved, that came several times a week, someone to help bath Mom and do her hair, a social worker that came and always brought flowers from her garden and a doctor who visited as well. We had all the equipment needed delivered with just a phone call. We only needed a hospital bed for about 4 days before she died.
The night she died, it was my Dad, my sister and myself with her. We held her hands, whispered that it was ok to go and told her how much she was loved. I wrote about it throughout that long, long night here on the boards.
I have to say it was the most precious moment of my life. This woman whom I loved more than life itself, who had brought me into this world was slipping away from me but I was able to be there to help her. I can’t tell you how precious it was to have her slip from our loving arms into those of her Lord and Savior. It has made such an impact on my life and my outlook.
I no longer fear death as I once did. In some ways I think I’m a better person than I used to be.
I guess what I’m trying to say is not to fear death. Talking about these things and having options can take away a lot of the fear and anxiousness. Then you have time for the joyous moments and memories. Sitting with my Mom talking about the past and yes the future too…made it more bearable.
My heart goes out to all of you that are nearing this point.
I’m sending hugs, prayers for strength and peace and lots of love.
Hugs,
PamI would just like to comment on Janets post. My friends brother is currently in Hospice care and she said they have been wonderful. They can stay with him 24/7 and know he has full nursing care if needed.
My other friend lost her Dad last week and he had home hospice, and this too she said was a big help. Her Dad wanted to stay at home and with th help of the macmillan nurses his wish was granted.
Each story is different and it is such a personal choice, and one that the family must make together.
My Dad has said he will do what ever my Mom is happy with as she is the one that will be caring for him. As long as we can be with him he is happy. I would like him to stay at home but if at the time the pain cannot be controlled and it becomes to much for my Mom then I am more at ease with him going into hospice now my friend as told me how wonderful it is. One thing I do know is he won’t be going to our local hospital.
Love and prayers to all.
I have seen a lot of people die in my time as an RN over 30years.In my experience not everyones circumstances are the same and the speed with which the illness progresses or the type of symptoms to deal with can vary.Home with good support will always be the best option but hospice/palliative care facilities are lovely too and sometimes will be needed even if the preference is for home.
What is not nice and not a good place to die in are acute care facilities especially ICU and emergency departments and it is best to avoid the scenario of wanting something done!when palliative treatments are more apropriate and it is the recognition of when people have crossed into that place that is really,really important. JanetGosh, thank-you everyone. I just felt it was a perfect time to say something with some of us nearing this point.
Kimmie: It all really goes the same for any loved one. I guess bottom line is we can choose what to remember and I choose beauty and love.
Elaine: I remember what you went through with Gary and I knew you would also remember him the same way.
Katja: I am nowhere near a Medical person. Wow, I couldn’t even remove splinters from my kids, it hurt me too much. Somtimes I feel I am someone else watching me do these things.
P.S. and we live, love and go on as that is what our loved ones want us to do.That was beautiful to read, Lainy, and I can tell you from experience that the memories you’re creating now WILL carry you through later. Being at peace with your situation and the knowledge that you fought as hard as you did TOGETHER will give you the strength and attitude that will allow you to continue on as Teddy WANTS you to. I’m still praying daily for a gentle end for Teddy and for a calming peace for you. You’re helping to keep my wonderful memories of Gary alive!
ElaineThis thread has been like having a massive hug and being told it’s going to be ok. A good friend died recently of cancer on a surgical ward, it wasn’t peaceful because the nurses didn’t really deal with it properly. I suppose Hospice being involved almost always makes things calmer. I love the honeymoon way of looking at things, just hope I can try to hold that when the time comes. I wonder if it takes a special kind of person to deal with it in that way. I’m no natural nurse.
I’m going to print this off and keep it-thank you all xMary, not morbid at all. I am a believer. Not sure you remember but I posted a couple of times that my dad who believed in not much he couldn’t undertand saw Heaven and was peaceful. Doesn’t get any better than that.
Lainey,
I can’t believe I forgot but Tom’s little brother also died here when he was just 9 years old from a seizure in his sleep. I know all this sounds morbid to some but I almost feel like this is Tom’s family’s hospice. When he was first diagnosed and I got home from the hospital after endless long days I just really felt the love of this old house and it’s spirits around me. I just asked all of them to help Tom be well. I will get him home come hell or high water if necessary down the road. I was a nurse many moons ago though so I can handle things better than some. I just hope I don’t have to handle anything for years! Take care, MaryWow Lainy, beautifully put. And you too, Mary.
I agree with everything you both said, though not as a spouse but from the perspective of being one of the daughters and caregivers of a CC patient who died on home hospice. (Though Mom was at my sister’s house, not her own house, but sis’s house was much better set up for a hospice situation.) We made so many memories that I know I will cherish forever, and I already revisit them in my mind only 5 weeks after she passed away. And even being there when she took her last breaths. It was sad, of course. But my Dad and all three grown kids were there, as well as Mom’s sister and brother-in-law. It truly was peaceful.
God’s blessing and peace to you and your husbands, and to everyone who reads this post and is dealing with CC in their lives.
Lainey,
That is beautiful and exactly how I feel about things. If and when the time comes I know it will be the same for Tom and me. Our farm has been in his family for 4 generations. His great grandma and grandpa lived and died here and also a great aunt at the young age of 17. My brother-in-law used to claim the house was haunted because of all the people that had died here( the original owner lost his wife and daughters to influenza and used to hold seances in our attic) but I always said they were good spirits and they’ve always been kind to us!! Unless it isn’t possible for one reason or another I will make sure Tom passes here and I believe it will be just like you say, a peaceful, loving time. I guess it will be different for me. I don’t want my kids to have to take care of me and go through what so many do here. I would want to be in hospice if it was left up to them to care for me. I’m going for a quick exit though, heart or something easier than this cancer business. I’m not tough enough to deal with the things all of these wonderful patients here and Tom and my sister-in-laws have gone through. Peace be with you and Teddy, MaryI hope you trust me enough for waht I am about to tell you. Dying at home can be a wonderous experience. Trust me, we are doing just that for Teddy. You know we have the help of Hospice and they really guide you through everything.
While it is true at first, we thought Teddy would end his journey the beginning of October, here he is. In fact we had given away all Xmas decorations as I am Jewish. Well I feel he needs some joy around here so I am going this afternoon to get a few Holiday things to put up in the living room. It’s a surprise. What we are going through is beyond words. In a good way. He is so at Peace with it all, pain under control and unless the pain gets out of hand, I will try keep him here to the end.
A very wise friend told me she thought I was strong enough to do this and that if I could, it would create feelings unlike no other. Funny thing is our ONC said the same thing. They both said, “very few couples EVER feel the depth of love so deep as when going through this at home, together”. They were both so right. I would not give up one day we have had in the last 4 months. Do you know what it is like to have Teddy tell people we are on our honeymoon? It is not a walk in the park but the good parts compensate for the not so good. The selfish reason for all this is that I will NEVER look back and see this all as the monster it is, but will view it only as ” Our Precious Time”. It works.
One more thing. When we were told the docs could do no more we had a feeling, you know how that is. We both let go of the fight, Peace came and we have made beautiful memories that will float for eternity. What ever time is left I want it here with me, I am that selfish that I will go through this to be with Teddy.
Hope this helps a little.
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