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Meet fellow Caregivers - Introduce yourself
Caregivers | Last Active: Nov 12, 2023 | Replies (707)Comment receiving replies
Hello to other Caregivers... I've been on Connect for about a year now, but mostly for learning more about Diabetes and Neuropathy.. I was recently diagnosed Diabetic Type 2 and have neuropathy in both feet.. and moving up my legs now.. My husband had been helping me through my new illness, but now our oldest son's Diabetes and Parkinson's have effected him to the point that he said he is ready to stop dialysis. He lives in another state, is not married but has a caregiver who comes in every day to help him with meds, meals, etc. His only child, a daughter (28 years old) lives with him at present, too.. She works full time at a stressful job.. and now I've been here for a month to help him through all his preparations for dying. Some of his friends were here yesterday to have a meal and reminesce old times for one last time.. He has another set of friends that he would like to come see him also, before he stops dialysis. Needless to say, this is a sad sad time for all of us who know and love him..
My main concern for him right now is this: We've been told that by stopping dialysis he will have an easy painless passing.. But if his body begins filling up with fluids that he will suffocate slowly. Of course, as his mom I pray for him to pass on without pain.. and please God, not to suffocate slowly. Hospice has been contacted, but he has declined them starting with him so far. I have talked with him about this, but he does make his own decisions.. He said he doesn't want them in and out of the house to see him. He can't seem to understand that it doesn't have to be that way, but would be a big help emotionally for the rest of us, too..
My son has been hard to get along with for most of his adult life, but now, with our time together we have become so much closer than we were since he was a child. That has been a huge reward for both of us.. We talk openly and freely about his dying and what he wants us all to know now. His daughter has always been dominated by him, but also is ready to get on and live her own life. Her mother is not much part of her life and never has been, but I and her grandpa have always been here for her and she relies on us to be her family.. Of course, we are in our mid-70's and hope to see her with a loving partner someday.. She is bipolar, but on medication and in a program that has already helped her immensely.. She is responsible, cute, and reliable.. and very cautious about who she allows into her life. She has a very responsible job and the company and workmates respect and rely on her technical abilities.
This is the absolute hardest thing I've ever had to do, but I am determined to be here for my little family for the duration. They mean everything to me in this life. but meanwhile, my sweet ole husband is living alone in the next state and I miss him so much. He must be at home though, as he requires peace and quiet. It is far too disruptive for all of us when he is here... sigh...
Replies to "Hello to other Caregivers... I've been on Connect for about a year now, but mostly for..."
My thoughts and prayers are with you and your family. We dealt with a very similar situation with my mother-in-law. She was in end stage renal failure and along with osteoporosis was no longer able to care for herself. She decided that she was stopping her dialysis. Her mental faculties were impaired because of the kidney damage and thought if she stopped the dialysis she had to stop all medications including pain meds. She decided to do this just before the Christmas holidays.
I had a talk with her and told her that if she was truly ready to end her life that was her decision however I wanted her to think about those around her that would be affected by it. I asked her to think about her son and daughter and her grandsons and how it would affect them to lose her at Christmas. I reminded her that her death at Christmas would make a very happy family time a very sad time for a very long time. I lost my Dad at Christmas many years before and it affected me deeply. I also told her that she could stop dialysis but continue her medications. She wouldn't listen to me.
I talked with my husband and we decided to contact Hospice for advise. We didn't ask them to get involved, we just wanted information. However, they immediately visited her at the nursing facility and we hadn't even talked to her about getting them involved. The Hospice nurse immediately got her set up on morphine for the pain. The nurse also let her know she could continue her medications even though she stopped dialysis. We already knew that stopping the dialysis could be a painful process especially when her body began filling up with fluids and toxins that were no longer being cleaned from her system.
We visited her to discuss Hospice and saw that the morphine was giving her much needed relief from her pain. She had decided that her family was trying to stop her from doing what she wanted. She told us that the facility staff had contacted Hospice for her. We told her that we had contacted them for her because we wanted her to be comfortable.
She passed away on January 9, 2000. She was able to spend a final Christmas with her children and grandchildren enjoying each other's company and for a short while being the Mom and Grandma that we all remembered so well.
My heart goes out to your husband. I'm sure he would prefer to be with you and his son but I understand not being able to be around all the stress. Maybe you can go home for a day or two so he can see for himself that you are doing fine. I hope your son will allow Hospice to just come talk to him about what they can do for him and the family. They can be an invaluable source of assistance and guidance for all of you.
Hugs and Prayers.
Hello @hotfooted What a terribly difficult position to be in. Caregiving has a way of demanding the unthinkable of us at times. I am very sorry to read of your son's health prognosis and how it is effecting so many in your family.
I know it is very difficult to change a patient's mind as a caregiver. In my wife's situation we had a very understanding physician who we could talk to and who would then talk seriously with her to help her understand what he believed was the best for her care and comfort. Often times coming from her trusted doctor made all the difference, especially when it came to talking about the realities of what was to come due to her disease.
Just my two cents based on what helped my wife and us at the most difficult times.
Strength, courage, and peace
@hotfooted Thank you for coming here to share your new reality. It must be terribly lonely for you, to not have your husband by your side as a united front. My guess is that both he and your son are missing the opportunity to bond like you are with your son.
That was a difficult decision for your son to make. Perhaps a trusted medical person can explain to him what will realistically happen when he stops dialysis, and offer information on palliative care and hospice. As has been said, hospice can tailor their care. And don't forget they ware also there for you, your husband, and granddaughter regardless of what your son decides.
I hope you can get a few days away to see your husband, for both of your sakes. You will return with renewed purpose. I'm glad you have a closer relationship now, and in your talks, you can express lovingly, how you feel about his decisions. He may choose to see how his decisions affect so many.
We're here for you, We care.
Ginger
@hotfooted This is such a difficult time for you and the whole family. I’m so sorry. Hospice is still a good idea for you and your granddaughter. You could sit and talk with them and explain about your son. Mostly, they could come in for you because you also need guidance and support. You might even request the quietest nurse they have. When your son becomes aware that they’ve been in the house helping you and his daughter, he may change his mind. They can manage end of life situations and pain management if he had any discomfort. As an oncology nurse (also worked in renal care), I saw that most patients went to sleep the last few days of life. I hope all the suggestions on MayoClinicConnect will be of some help you.
One last thought: is it possible for your husband to come to your son’s home on weekends? Can someone drive him? I really think he needs to be there. Best thoughts for all of you
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If your son knows the Lord, and have ask him to come to live in heart and accept him as his savior, then only God knows when he will take him. Pray for your husband because, he needs your faith and strength. It is those who are left behind, that suffer most. You need your faith ,and your love for God to give you peace in all that you do. Prayers for you are here for you.