Monday, October 11, 2021

Caregiver Update

 

Bill with his hospice nurse last week

Regular followers of this blog have no doubt noticed that I haven't been posting on a regular basis. 

I've been blogging since 2005, right before we moved to Delaware. 

For long stretches I've blogged almost daily, sometimes even twice a day. 

These days, since I assumed full-time caregiving for Bill in February of this year, my blogging pattern hasn't been the same, to say the least. 

I've felt guilty about it, because I feel a responsibility to keep my regular blog followers up to date with my sometimes chaotic life. 

Why should I feel guilty? 

That's the way I was brought up folks. To feel guilt for anything that veers from the expected pattern of what others expect of my life. 

Granted I've come a long way from those days (Day One to late teens) feeling guilt just for existing and taking up space on this earth. This the result of a constant barrage of verbal and metal abuse by my father who didn't want children. 

He was a very selfish man. It wasn't until I left home at age eighteen and joined the Army that I began to experience a different view of the world and myself. That I actually had value as a human being and I didn't have to feel guilt for taking up space on this earth. 

Then I met Bill and for the past fifty-seven years he has been my biggest support in life. I have been one of the lucky human beings in having this loving and lasting relationship. Big movie star sex symbols like Marilyn Monroe haven't been as lucky as I have and continue to be. 

At this time of my life my waking hours and sometimes my resting hours are consumed with caregiving for Bill, my loving relationship of the past fifty-seven years. 

I do not regret that responsibility and am thankful that I have the opportunity to take care of my love at this time of his life. However, it is exhausting and does take up my life now. I am literally on call 24/7, ready for the latest emergency.

Bill is fading. He is getting weaker every day. His cognitive abilities are worsening. He is wearing Depends full-time now. This after a very messy accident last week.  Yes, Bill is now completing the full cycle of his life, starting out with diapers and ending his life in a diaper. He has accepted that fact, after initially resisting but after several "explosions" and then cleanup by me, he has acquiesced. He has also acquiesced into letting me have a respite from caregiving.

The hospice center can take him for a week every three months (ninety days) under their caregiver respite protocol. Initially Bill was totally against anyone but me taking care of him. Now he realizes that perhaps I can use a break. And I can folks. I am exhausted. 

I don't know when I'll take advantage of this "respite care" break but it's good to know that I have that option. I may never use it but I get some relief knowing that I could.

Every morning, when I treat Bill's edema on his lower legs, Bill tells me he tired of living. I can understand how he feels. He can't see, he's weak and getting weaker. He can't read. He can't do his projects. But he says he doesn't want to leave me. 

We're caught in a quandary folks. Sure, I know I'm to the first caregiver to be in this position. And my position could be a lot worse and for that I am thankful it is not. I keep reminding myself Bill knows who I am and he's not in pain. He can move around albeit shaking and slow but he can move. 

With all this said folks, while I'm in this situation I won't be posting as much as I did before Bill's two stroke in January. 

I am Bill's full-time caregiver now. I am a nurse/companion/live in EMT support.

With what time I do have off I have to engage in activities like playing online Scrabble, talking with my friends on Zoom and Facebook and reading to balance my life. 

For those of you who have been with me on this long journey since I began my blog in 2005, my    apologies.  Yes, I do still feel guilty.

Now I have some Scrabble games to update.

Have a great day everyone!




19 comments:

wcs said...

Hang in there, Ron! You're doing a great thing. And I'm certain Bill knows and is grateful to have you there.

Woody in Ohio said...

Ron Tipton, you are a good and caring man. What you are doing isn't easy. I know from my own experience that just when you think you can't do it anymore from somewhere comes the strength to carry on. I think it's love for our partner that gives us the energy to do what has to be done. I think it is great you are taking good care of yourself because it is easy to forget to do that. Keep up with your Zoom group and your daily routine. Remember you need support for your mental and physical wellbeing. Take care Ron. I am proud of you! NEVER feel guilt for not vlogging because we all understand why you aren't. Much thoughts of love to you from Woody in Ohio.

VRCooper said...

Hello Ron,

Yes, the circle of life. It is not a bitch?

Don't feel guilty. Just do you. But a once a week update would be nice.

I like the idea of respite care every 90 days. I have not heard of that. I have to think about it. So, they will take Bill and care for him while giving you a break. At first blush, I understand and agree with the concept BUT knowing older folks this will create more confusion than good. The elder person adjusting to a new place, routine, people...And then, maybe when things settle down it is time to go back to their home. From what I know, older folks like routine. They like familiar faces. Now if they can create a program where one would come to the home for let's say working hours while the caregiver takes a break. Realistically the caregiver is still in the home and I don't know how much of a true break that would be. One may want to be alone and just breathe. I just want Bill to be comfortable, pain-free, and happy as one can be.

Please continue YOUR self-care. Even if it is just an hour or two here and there.

Please keep up posted.

Best of health,

Victor
xo

Anonymous said...

Why reproach yourself and feel guilty about the care and devotion that you are giving so that Bill can spend his last days in comfort and security? I beg you to take advantage of the respite care once every 90 days. You have earned by your care and devotion this opportunity to recuperate and recharge your physical and mental strength. Roderick

Jon said...

I can certainly understand why you don't have much time to blog, Ron. Being Bill's caregiver is undoubtedly a very difficult and overwhelming task - both physically and emotionally. Yet, it also has rewarding aspects - an everlasting bond between you and Bill.

Please take care and try to find some time for yourself (much easier said than done). Never feel guilty. You are doing a superb job. And keep us updated whenever possible.

Julie A. said...

Just wanted you to know I am thinking of you and Bill.
Julie A

lexie said...

Ron

You are doing a magnificent job. There is nothing to feel guilty about. You are doing what needs to be done and that includes time for yourself to recharge. That's another way to help Bill.

Bless you for the wonderful care you are giving your partner.

Your are in my thoughts and prayers

Ur-spo said...

thank you for the updates.

Ron said...

Walt,
Thank you for your encouragement. Means a lot to me. You understand.
Ron

Ron said...

Woody,
Good to hear from you! Yes, I surprise myself when I find more reserves of energy to cope with the latest development with Bill. It's so sad to see him fading like this but at least he still knows who I am and is not in pain. I keep those two factors as my barometer.
Ron

Ron said...

Victor,
I probably won't put Bill in the hospice center for a respite care. You're right, it would be too disrupting for him. I can manage with him here. I have it a lot easier than many other caregivers. Now that they opened the border between the US and Canada Pat may come down for a visit. That would be a respite for me even though Pat would be staying here in his bedroom that I have for him. He hasn't been here for almost three years now but his bedroom awaits him.
It's so important to keep Bill comfortable though and in familiar surroundings. He is slowly fading though. So sad. But he's not in pain and knows who I am. So important.
Have a great day!
Ron

Ron said...

Roderick,
Thank you for your advice. I haven't decided yet if I will take advantage of the respite option for me by putting bill in the hospice centre for a week. At least he's agreeing to it now, although reluctantly. I would never force him to go there though.
Have a great day!
Ron

Ron said...

Jon,
Good to hear from you! I often think of you coping in the Tennessee wilderness. You may not think so but your blogging is always interesting, that's why you have so many followers. By the way, do you do Zoom calls yet? I would like to add you to my circle of friends across the country that I do zoom calls with. All good guys. You would like them and I'm sure they would like you. Especially with all you Hollywood background.
Have a great day Jon!
Ron

Ron said...

Julie A.
Thank you Jully for your support and encouragement.
Have a great day!
Ron

Ron said...

lexie,
Thank you for your support and encouragement. This is one of the toughest times of my life. I'll get through it one way or another. I'm just thankful that Bill is at home where he is comfortable and not in pain and knows who I am. It is sad to see him slowly fade ah day though.

Have a great day!
Ron

Ron said...

Spo,
Always good to hear from you! You know what I'm going through now. You understand. I'm glad I can support Bill now but I don't think I could ever do this again. Once is enough. But I am so lucky in so many ways. Could be so much worse. I am blessed for sure.
Have a great day and keep those "Good morning" memes coming. You got me started on something which I have spread to about ten of my dearest friends.
Ron

Elle Clancy said...

Thank you for the update. I try and check in to see how you and Bill are managing; I know it's difficult. Much love to both of you from Ohio.♥

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Anonymous said...

The fact that you don't post anymore is a clear sign you need the respite care , once every 90 days , real bad !
But you present it like it is open for debate . But is it ?
We only learn your side of the story concerning Bill's health and happyness .
We never(!) hear his voice on these matters here .
So how can we know what REALLY is going on ? ...

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