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Topic Husband now in Hospice Care Go to previous topic Go to next topic Go to higher level

By Michele On 2012.01.18 18:18
My husband has been in advanced stages of PD for a while. He is now in the end stage. He sleeps for very long periods of time and I had to hospitalize him just before Christmas when he slept for four days and then became unresponsive. He was dehydrated. He is now much weaker and sometimes hard for me to transfer alone. His medical needs are increasing. I called in hospice this week to get more support for him and for me. As with most of you, I am the one and only caregiver. The hospice nurse has been wonderful and I am going to take full advantage of counseling. I have been going through the grieving process in different ways over the past ten years. Now, however, I am pushing aside my emotions/grief by staying busy which is not hard. I have been distracting myself with movies and books. I am afraid of the future...of losing him forever. He is the love of my life.
Has anyone on this forum been through this? I would love to hear from you and how you coped with this.

By susger8 On 2012.01.19 07:38
I have not been through that (yet) with my dad, but my mom (not a PDer) was in hospice before she died. Even though you already have been mourning during a person's long illness, it is still very difficult. You will be in my thoughts.


By lurkingforacure On 2012.01.19 09:03
Ditto. I will add that in the months after your loved one passes (my mom, and also my FIL, within two months of each other, no less), support and well-wishers will come your way. It is in the period of time after that, say 4-5 months and later, that the support dwindles away and you find yourself dealing with it alone. I could only talk to my PD husband so much about losing my mom, he has PD after all, and just really could not handle it much. Plus, he had just lost his own dad, a wonderful man. I find myself alone and tearing up all the time. As in, several times a day.

I know it is normal and I have always been a big crybaby on the inside so I know it's healthy for me to cry and sob and question and doubt. It's just hard. Even when your loved one has been declining and you KNOW they are not going to get better (my FIL was terminal, my mom I didn't want to believe was not going to be coming home), it is still hard.

It's part of life, though, I know. I try to be grateful for their presence in my life and for the time we had together. Some days are harder than others. Don't deny yourself the time to cry and scream and sob yourself into exhaustion.

By parkinit On 2012.01.19 20:27
Michelle -

Such a difficult process, but such a part of life - as we are born, so shall we die - right? It sounds poetic and gallant, but it is painful and you mourn and groan within yourself at the loss. I lost my dad last February and I still miss him every day. I think about losing my spouse - the person I love so dearly not being here - and it causes so much loneliness and pain just thinking about it. I've prepared in many ways, but the actual thought of not having that person around is very painful to grasp and imagine.

I don't think you can prepare.

By Michele On 2012.01.20 18:28
Thank you all for your thoughts, feelings and experiences. The best part of this forum is the knowledge that I am not alone. I treasure all of you.

By caregivermary On 2012.01.25 16:31

My husband passed away last September. I know how you feel. I thought I was prepared but I wasn't. How could our husbands no longer exist. It is still very difficult to accept. I know he is not suffering now but the loss is so great. It has been very difficult for me to even read the forum because I wonder if I did everything I could do.

Keep talking to your husband and hold his hand. Hug him if you can. Say everything you want him to hear. However, let him know it is ok to go. Take care.

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