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| Bill and me at the VA Outpatient Clinic in Georgetown, DE January 29, 2020 - one year before his strokes in January of 2021 |
Bill couldn't get out of his chair this morning when I went to his bedroom to prepare him for the day.. I was able to get him up.
Later in the morning Bill slid out of his recliner chair in the sunroom. He didn't fall but slid out while trying to get up to go to the bathroom. He was on the floor and couldn't get up. I tried but couldn't get him up. I called my neighbor for help. He came over with his housekeeper and the three of us were able to get him up.
Bill managed to tell me between his episodes of dementia that he was "ready to go." He also told me that he wanted me to "do what I had to do to help myself". By that he meant he no longer opposed me taking several days off for respite care. Also he didn't oppose a hospital bed in our sunroom and help from hospice.
The help from hospice would be one of the volunteers to sit with Bill for a couple of hours while I take my afternoon nap. I cannot continue being on alert every waking hour and now non waking hours for Bill's latest confusion. I don't need anyone to help me wash and dress Bill and change is Depends which I do twice a day now.
Hospice will deliver the hospital bed tomorrow. I won't be able to take advantage of the respite care until a room is available at hospice. Also, I have to get through this holiday (President's Day) weekend. Probably the middle of next week at the earliest will I be able to get a break.
Not to make this about myself but I'm almost at my end here folks. I thought I could do it but I'm afraid I'm reaching my limit. Hopefully with some respite breaks and the hospital bed which should prevent Bill sliding on the floor again and the hospice volunteers to sit with Bill while I nap, I can continue to have Bill here at home.
Remember this folks, I'm not the only caregiver going through this. Still managing but with some changes.
12 comments:
I'm glad to hear there's going to be more hospice intervention. The volunteers will be helpful in letting you get some needed downtime for yourself. The hospital bed will be a big help. Hopefully Bill can remain at home for as long as he's with us. I know this is taking a toll on your mental and physical health, Ron. Utilize as much help that is available. Taking care of YOU is imperative.
Paranormal John
I am happy to hear that you will be taking advantage of hospice assistance. It will give you a break to just relax, do some errands, and a little "me" time. A few hours a week can be a godsend.
I know it was agreed that Bill remains at home in familiar soundings. But there is a line to be drawn when it starts to affect YOUR health mentally and physically.
It's a tough road to hoe but taking advantage of the services provided can make all the difference to you and Bil.
Be well!!
Ron, I’m relieved to hear about hospice for both of your sakes. There should be no reason to feel guilty or hesitant about anything you have to do to take care of yourself and make it easier for Bill. It’s evident Bill still has the capacity to care about your well-being. That’s a great gift and one that you can accept without remorse.
The hospital bed is best for all involved in Bill's care. When my last partner E finally realized that my taking care of him was "destroying" me he said bring them (Hospice) back an get the damn bed. E realized I could no longer roll him and lift him in our king size bed. Within an hour of my calling our Hospice contact the team arrived and with them a truck full of equipment. They took over and it was done with as much care for my health as it was for E. He complained a bit about this or that but we all do when we are sick or in the hospital or rehab center. My E knew he had maybe 8 weeks left until the end and he told the nurse he hoped I would be asleep when he passed away because he thought it would be easier on me. Suddenly as the end approached all his thoughts were on making it easier for me. He soon figured out that eating was keeping him alive so he refused to eat. It also lessened his pain. I would feed him shaved ice that was made from frozen canned apricots which he loved. The sweet fluid made it easier for him to speak. The home Hospice care team fell in love with him. It has been 10 years now since his passing and I went through all the papers having to do with E's Hospice care. As I read the daily diaries that the team kept they all commented on my devotion to and deep love for E. When he gently slipped away that warm fall afternoon I don't know who cried harder the team on duty or me. Ron, you'll grow into the Hospice team way of doing things. Also, I think maybe Bill is "hanging on" for you so assure him subtly that you will be okay when he has gone. He is worn out and ready but he is not sure you are ready for it. I hope you are understanding what I am trying to say. It is going to be okay Ron. You'll see. It really will be. Hanging in there my friend. Woody in Ohio.
Woody, that is beautiful and comforting to all of us. Thank you for sharing.
Paranormal John,
It is time for the hospital bed. I'll have it put in our sunroom where Bill spends most of his day in his recliner. He's using that as a bed now anyway. And Have definitely decided to take advantage of the respite program that hospice has been offering me for the past three years. I'm still not sure about the volunteers. I can still take care of Bill. Dressing and washing him and changing his Depends (twice a day now). Eerythree months with the hospice respite should work. I doubt that Bill will last through the summer. but you never know. I do need a break though. I've just about pushed myself to my limit.Thanks again for your advice.
Ron
Vic,
I definitely have to use the offered respite program that hospice has been offering me. It's important that the suggestion came from Bill. He's still not going to be happy not being at home but I realize now I have to take care of myself if I'm going to continue to take care of Bill. Thanks for your advice.
Ron
Ivy Green,
In Bill's more lucid moments he does realize that I need relief from the constant care I have been giving him.this is necessary for both of us at this stage of his care. thank you for your advice.
Ron
The comments above say all that I wanted to say. Glad you can plan to take care of yourself as well. Olivia.
You are one Loving, Tough, Devoted guy.
I am in Bill's place with a much younger husband like yourself. I worry constantly about wearing him out.
Your blog has helped me and I'm sure others to understand what it takes to make it to the end.
Anonymous,
I know I'm far from the only caregiver in this position. In many ways I'm very fortunate that Bill is still somewhat mobile although shaky. Also that I have him here at home with me where he is most comfortable. And that most of the time he is lucid. And perhaps the biggest concern is that he isn't in pain. I am so thankful that he isn't in pain. He is in discomfort though. He's just slowly fading away. It is so sad to bear witness to this stage of his life but again, I am thankful that we are together now and that his passage will be easy. I hope you're able to manage as well as I am in caring for your husband.
Thank you for your comment.
Ron
Olivia,
I finally got to the pont where I realized that I do need a break. I will schedule a respite every three months for the duration of Bill's stay in hospice.
Thank you for your comment.
Ron
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