I want to tell each and everyone of you on this support group what a blessing you have been to me during a very difficult time in my husbands and my life.
My husband Larry passed away last Friday night surrounded by his family. He was a very strong man. He was in control of the way he ended his life, not the PSP. It was on his terms and timing. I did honor his wished, however, it was the hardest thing I had ever done in my life. His wishes were not to have a feeding tube. He lived 4 days without it before his kidneys started to shut down. Once that happened there was no turning back.
His last words were " I love you". He had 95% of all of his mind up until the end. He know what he was doing. He knew if he did the feeding tube the disease would have progressed and took all of his mind and body within a few years, he wanted to have no part of that.
I love and miss him so much now. I sleep in his hospital bed and wear his tee-shirts for PJ's now. It is my way of being close to him. I am not ready to say goodbye.
All you you have taught me to stay strong and give back. I thank you for that. I would love to be a part of this group or my church group to give back to those going through this. I have you guys for teaching guiding me and teaching me along this journey. I love each and everyone of you even thought we have never met. God be with you and give you some comfort on your journey in this disease. I will no just stop taking part in the community. I just want to say thank you for all you do.
Written by
mthteach
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My husband has also chosen not to be tube fed and not for resuscitation.
He is not near end of life yet and we make the most of each day, but reading your post confirms that as this time approaches, we too will take that tough decision.
Good luck in all that you do.
You now have a new journey ahead of you and I hope it brings happiness to you and that your memories of your dear husband will be of the happy ones.
What lovely words at such a traumatic time. Sending you much love. Larry and yourself shared so much together and ultimately his wishes about his life. He will be with you and watching over. Xxx
I'm so sorry Larry had to leave you but I hope you are comforted knowing you did your best for him and followed his wishes. You know he is now at peace and I pray you will also soon feel that special peace that only God can give. You have the support of your church and we will be here to listen if you need us.
You will be in my prayers during this very difficult time and when you are able to let go and say goodbye I pray you'll find life after PSP and again know peace and joy.
So sorry to hear that Larry has died. But it is comforting to know that he remained his strong self and not defined by PSP. There is so little he can control in this disease.
You have shown your deep love and respect for him in following his wishes.
It will be so hard to let go but I hope time will help you heal. You clearly had a strong bond. I hope you have plenty of support. You have us as well.
Firstly I am sad to hear that Larry has passed but feel relieved that he is free of PSP and its horrible consequences. You made sure that his wishes were honoured as he didn't want to extend his life with interventions. You must feel in a very raw state and find comfort in sleeping in his bed and the familiarity of his clothes, I for one fully understand that need. I asked my counsellor what grieving would be like as I feel I have already done an awful lot of that as the man I knew is slipping away. She said that it is different in every case. Please take time to grieve in your own way and as time passes you will remember the good times you had together. My heart goes out to you.
I'm so sorry for your loss and would like to thank you as well for all the support and guidance you have given to us all, I hope it will continue.
I'm thinking of you as I'm sure everyone else on this site is, in the end you did what your husband wished and I'm sure he will have been grateful for that. Your post has made me cry as I know I will feel exactly the same when our time comes.
That is a beautiful tribute to the site and Larry. It made my cry. My also husband chose no PEG, and I think it was more merciful in the end. Bless you, and kia kaha, kia kaha - stay strong, stay strong. And keep wearing the tee shirts for him. X
God bless you Debra. Larry is free from this wretched psp and as hard as it was you are wonderful in supporting his wishes. Grieve for as long as you need then one day the sun will shine once more.
I'm so sorry that Larry has passed away, but as you say he was in control of that. I can't begin to imagine how hard it must have been for you, but you've been strong and courageous to carry his wishes through. W does not want a peg so I hope I can be like you if and when the time comes. Thanks for all your help on this site, I think we are one special family. Take time for yourself now and I pray you will find peace and strength in the days ahead. Would love to hear from you when you are ready.
I was out on my paddle board early this beautiful morning on our pristine lake and the words 'it restoreth my soul' kept coming to me. And I thought of everyone on this site, in their various stages of grieving, and hope that you all are able to find a little something from time to time to give back to you for all you give out.
I came back to find your message about losing Larry, and the choice he made, and your courage and love in supporting him through it. I remember the times you've helped me, and send love and prayers
I know for certain that my husband has no intention of riding this miserable disease through the years of indignity and humiliation that come with the diagnosis, and cannot blame him as I would feel the same.
Long may Larry's t-shirt comfort you as he once did.
My heart goes out to, with this awful loss of Larry. But find enormous comfort, that someone has had control of this evil disease and did things "his way"
There is only one way grieve and that's YOUR way, in your own time. Of course you will need support of others. Everything is now under your control, for the first time in a very long time. The next, how ever long, is your final battle with PSP, you will win this one! How do I know? Because you have survived everything thrown at you and gave Larry his final wish. Nobody could have done more for your husband. Wear his tee-shirts with pride.
Your post was probably the most beautifully written one I have ever read. Thank you so much, we all get much needed support from each other, your words have given me that extra little boost I need at the moment. S's swallowing has suddenly got worse.
My thoughts and love are with you and your family at this sad time. May Larry rest in peace, finally away from this hateful illness.
I cry as I sit and read. The inevitable road has been walked. Goodbye Larry.
And though you know this was coming , it's still a shock. What to do now....I thinking of my husbands time and I become numb with sadness....I pray for just you now MT. That after the grief, you find solace. You and your experiences on this site has brought many comfort and strength to go on; to find another answer; to be ok with the answer that was given...thank you MT. The Lord has taught you how to really help others. When it's time for you to get up from the mourning and go again with life, know that God has great things for you to do.....
AVB
But as for you, (continue to) be strong, do not give up, for your work will be rewarded.
2Chronicals 15:7
Fear thou not, for I am with thee; be not dismayed for I am thy God; I will strengthen thee ; yea I will help thee ; I will uphold thee with the right hand of my righteousness!
Isaiah 41:10
But the God of all grace, who has called us to his eternal glory by Christ Jesus, after you have suffered a while, make you (MT); perfect, established, strengthened, and settled.
So sorry to hear about Larry. I thought I was going to lose Kim several times this past week. On Saturday, I had all the family come gather by her bedside to say their goodbyes. I've cried a bucket of tears. But yesterday I rechecked her urine and it was horrible. Nitrites, leukocytes, protein, and blood all showing up on her urinalysis. I insisted that our hospice nurses get her another antibiotic, as I don't think the last one she was on 3 weeks ago ever worked. I'm also insisting they do a culture on it this time. After 2 doses, she's already showing some improvements. I know we're not out of the woods yet and will cherish every day until her final breaths are taken. May God comfort you in the days ahead.
I'm so sorry to hear of Larry's death. You were both very brave and I hope you can take comfort from the fact that you carried out his wishes right to the end. Take time to grieve in your own way.
So very sorry with the loss of your hubby Larry, such a terrible disease. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away. Please take care of yourself. Blessing to you and your family. ❤️
My heart felt condolences. My husband is on the same path. I dread loosing him too. When your whole life is wrapped around caring for some one and it stops suddenly you have to find yourself again I would imagine. You are on the right track to want to share your experience. This group will be here to encourage you and value your experience. God bless you .
mt, your post was heartbreaking. You are an strong, amazing woman and I have so much respect and admiration for how you supported his decision to the end. I only hope I can be as brave as you when the time comes. I am proud and grateful to know you and each and every one of the beautiful souls , (sufferers and caretakers), that make up this community. It has been my lifeline. We are all here for you. You are going to be ok, I promise you. Much love and hugs,
I just wanted to let you know how sorry I am for the loss of your husband. I missed your post on his passing. It was nice to hear he was able to leave on his terms. It really was a loving final gift to you.
Anyway, I was curious as to how you are. I do hope you are to able to find solace and are getting to know yourself again. I'm usually not at a loss for words, but when it comes to offering my well wishes in times of such sorrow, I'm not at my best. I just wanted to let you know that I appreciate your reaching out to me when I first started with this group and I do hope you are doing well and able to move on with your life. I hope you are finding joy in life again.
Anyway, I don't know if you follow the group any more, but I wanted to let you know there are still people out here wondering and wishing you blessings. Here are a few (((((Hugs))))) for you.
Thank you for that beautiful note on here. Yes, I do still check in on the group. Not everyday like I did when my husband was living. I felt so lost back then on how to help him. I still miss him like crazy. He was my rock for 39 years. I have been spending a lot of time with my children helping with the grandchildren. About a year ago my mom and siblings had booked plane tickets to St. Thomas. We went for a week. I thought about my husband everyday there because I knew it would be a trip he would have loved. After 4 weeks away from my home, I am finally back with my mom in tow. She is living with me now to help me get past this hard time. It seemed that my house kept growing bigger and bigger with me being here alone especially during the nights.
Thank you for the ((((Hugs)))) I really appreciate family and friends now days more than ever before. Love, Debbie
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