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| Bill's leg wound dressing by Ron |
Right now we're waiting for Bill's hospice nurse to arrive this morning. She visits us once a week, usually on Fridays.
Since I decided on hospice home care for Bill, this is a much better option. Previously we had home health aides arriving here several times a week, sometimes two at a time, which was very disruptive. I'm sure they were just doing their job but with two consecutive visits which told us to go to the local emergency room right away because Bill's blood pressure was too low, I decided that home health care wasn't working for either one of us. There was no practical improvement in Bill's condition other than his day was disrupted (mine too) with no tangible result. With his home hospice care, she only comes by once a week, checks on Bill's condition and provides practical help. For instance, Bill's right leg was seeping clear liquid from his edema. She immediately ordered an antibiotic that was sent the next day along with dressing and wound cleanser. The seeping and open wound is almost gone, much to both of us. I expected that his leg wound would continuing indefinitely and the best we could do was keep it from getting infected. Maybe Bill's walking outside helped. Now that the weather is milder (today's temperature high is forecast at 72 degrees), we'll both have a long walk through our development.
Since I had my talk with Bill about not acceding to his demand to remove his day bed from his bedroom and replace it with a table, he now listens and understands I know what is the most efficient way for me to take care of him. Bill is used to exerting control and usually getting his way (I almost always accede just to keep peace in the family), but now that I am taxed almost to my physical limits in taking care of him, I have to put my foot down on certain things Bill thinks he's "helping" me. As I said before in a previous post, our first major fight and many subsequent ones were Bill's demands that he "help" me. There are times which he has helped me but sometimes it's not help but just controlling me. Other couples have fights over money, infidelity, drug or alcohol addiction. Me and Bill, the only fights we have were over him "helping me" when I didn't need his help.
Here is an example of what happened when Bill tried to "help" me when we lived in Pennsylvania, one of many instances. I had a chicken house built for four pet chickens I had. The chicken house wasn't tall enough for me to stand in, I had to stoop to put in the chicken feed in the feeder. I had a custom made chicken feeder put in to the immediate right of the entrance to the chicken house so I could just stick my head in and refill the feeder. One day I went to refill the chicken feeder and it wasn't there but all the way across the house to the other side, requiring me to to crawl into the house and refill the chicken feeder. Obviously that didn't work for me. I changed it and put it back where it was. When Bill found out he asked why I changed it. I told him it wasn't convenient for me to crawl through the chicken house to refill the feeder and besides I'm the only one who is taking care of the chickens, there were my pets. Bill never refilled the feeder. He got angry and said "You never take my suggestions!" and then proceeded to go off in a snit and not speak to me for about a week. He took it personal, as he almost always does. Rather than say "Oh, I thought that would help you but since it didn't I understand." But that's not Bill. He has a level of insecurity, probably because his father died before he was a year old, that he takes personal offense when his suggestions aren't not taken. Now, usually I have taken his advice, whether I agreed or not, just to avoid an argument. But sometimes, especially when it is NOT HELPING ME but MAKING MY LIFE HARDER, I DO NOT TAKE HIS ADVICE and he just has to deal with it.
In my last blog post, an Anonymous commenter left a suggestion that I accede to Bill's control demands and not "threaten him " with going to a nursing home. First of all, I didn't threaten him with going to a nursing home. I just told him that if he was in a nursing home he wouldn't have the control over his life that he has here at home. He complains about people coming into see him, including his hospice nurse who is on her way here now. I told him if he was in a nursing home they would still see him and here at home they are just trying to help him as I am at the end of his life. I impress upon him that his care here at home is a lot better than he would get at an impersonal, expensive, and lonely nursing home. And I also impress upon him that my health is just as important as his in taking care of him and if I don't take care of myself there is no one else to take care of him. Those are just the facts.
I didn't respond kindly to that Anonymous commenter, which is something that I don't like to do but at this time of my life I have little or no patience with anyone suggesting to me to give into every demand of the person I'm caring for, whether they "help" me or not. That I should just humor a "nice old man" who cares for me a lot. This "nice old man" still refuses to pee in the toilet but at least I got him to stop peeing in the skink and instead pee in a jug which I empty several times a day into the toiled and clean up the tile floor below where he misses the pee jug. So you see folks, I'm not quite the unbending ogre who is threatening to send the "nice old man" to a nursing home. I asked "Anonymous" not to comment any more on my blog. Sorry to be that way folks, but that really pissed me off.
Bill and I are developing a nice daily routine here now after a bumpy start. I'm able to take short afternoon naps, which I was unable to when Bill first came home from the rehab hospital. Bill goes out for a walk without me when the weather is nice. Today he collected our trash to put out tomorrow, which was his job before his accident. Bill still wants to feel useful. One of the health care workers was aghast that I was letting Bill collect the trash but I told her I have to let him do somethings by himself so he doesn't feel so "useless" as he's been referring to himself since he came home. Bill would like to do more but his poor eyesight and hearing prevents that.
I prepare his meals for him twice a day, making sure to puree his food because he has trouble swallowing. I take him out for at least one ride a day and park where the sun shines in on him while I go into the store. Every three days I help him shower. Actually I have to do everything from undressing him to soaping him down, drying him off then dressing him all the while he moaning and groaning how hard it is for him. He should talk to my back. But I don't mind, I'm glad I have this opportunity to take care of Bill and knowing he's not in some impersonal facility like a rehab or nursing home. The big job is keeping all his medications straight and changing his leg dressing every day. Just call me Nurse Ron.
Speaking of which, Bill's hospice nurse hasn't arrived yet so I think I'll start making Bill's favorite carrot soup. Guaranteed she'll show up just as I'm cutting the onions and sautéing them in melted butter.
Have a great day everyone!
9 comments:
Dear Ron
You are doing a sterling job and you should be very proud of yourself. It is a shame that some people decide to criticize rather than offer genuine help and support but some people are a strange breed. Don't take it to heart what that anonymous person said as it is just a troll trying to get a rise out of you. You have to feel sorry for them to trawl blogs and only comment to be antagonistic. Unfortunately they are all around the world.
I think the disagreements between you and Bill are a good sign. It shows he has not lost his spirit despite the disagreements ruffling both your feathers.
Please do keep letting us know about how you are getting on in your lives as reading your blog is like reading someone's diary. Everyone is interested (or just plain nosey) to know about others lives.
You also have some lovely commenters on here.
I send you love and support from across the sea and hope to read many more years of your blog entries.
Best wishes to you both (and your good friend Pat)
Jacinta.
Jacinta,
Thank you so much for your understanding and kind comments. After I posted my response to "Anonymous" I suspected that person was a troll. A few years back I had a troll who did everything she (yes, I found out it was an older woman, sad, she must be so lonely to do something like that to pass her time) who consistently posted nasty comments to my blog which I never published.
Bill and I are doing fine, better than many who are in this situation of caregiving. We truly do care for one another but Bill does have this annoying habit of "suggesting" a way for me to do something and then taking it personally when I don't take his suggestion. Believe me, I know the pattern now after living with him for lo these fifty-six years. What is interesting is if I ever dare to suggest anything to him he will throw a fit and tell me to "get out!". I learned a long time ago not to "suggest" to Bill how he should do a job. Our good neighbor Bob M. has stopped over occasionally offering to help Bill when Bill is doing a project outside and it annoys Bill to no end but he doesn't (of course) say anything to Bob like he does to me. I know Bill wants to help but he doesn't realize that sometimes I don't need his help, I can do things much more efficiently myself.
Today Bill's nurse came over for her weekly visit. She's really very good and we're lucky to have her. She will come by in person every other week now, alternating between Tele-Health visits (video). We're actually in a good place now. I would like to go back to work but that's not possible now nor as long as Bill is alive. I do miss my job and the variety and balance it offers to my life but I have to take care of Bill at this time of his life. And he does appreciate what I am doing.
Thank you as always for your comments. My blog writing is my therapy and I'm glad others find it interesting because I do like to write and I do like to be appreciated, like most of us do.
Now it's time for Bill's evening medications.
Take care,
Ron
Ron, I hope that you're also feeling comfortable sharing how you're feeling with your friends. I know especially in a pandemic it could feel even more isolating. I'm glad to follow along like the rest of your readers. Just hoping you also have folks you can vent to so you don't feel alone.
Wishing you and Bill well.
Ron, I think you are handling yourself and your situation very well. Being a caregiver is not easy and dealing with an unwell person does and is draining physically and mentally. I never knew how difficult it really was until I attended a caregivers social hour at the senior center. I think it should be a requirement for everyone to attend one of those support group meetings. It is an eye opener to say the least. Now that the shoe is on the other foot these days I try hard to be kind to those who deal with me and my illness. I may be relieved when the bowel blockage is cleared but I am so embarrassed that someone had to do that for me and then clean it up. Ron, why is it always the feces and the urine? It causes frustration and embarrassment for all. I mostly enjoy the company those few hours a day they spend with me several days a week or as needed. It is hell when most of your friends and all your lovers have passed on to that great unknown. I try very hard to keep active and care for myself as well as I can. I am only 68 but inside I have aged greatly. I may have many hours of almost unbearable pain but my years caring for my partners who have passed taught me how to endure it and not burden others with it. I am trying hard to stay in the apartment that I bought among the things I love which is what you and Bill are doing. What a beautiful home you have made. I have made arrangements with the hospice group I like the best so that when the time comes they will be in good hands.I am not really burdened with anything because the attorneys are taking care of things. I am lucky that I have the funds to live to be 100. I am however a lot like you Ron because I spend many hours a day updating the family trees and identifying photos and placing them in archival albums and boxes. That those things are preserved and have a home with one of my third or fourth cousins is important to me. After all things are scanned copies will be offered for a fee to my 8,000 or more distant cousins.Meanwhile I am enjoying following bloggers like you and various cousins who vlog. Keep the faith, stay strong and carry on the good fight for your and Bill's life. Thank you for sharing. After all these years following your blog and others I feel like I know them all and enjoy updates from you. Maybe it won't be long until Pat can come for a visit. Cheers to one and all! Excuse errors I just forgot the spell check and too tired to do it. I will check in again another day sometime my very distant cousin.
Ron.
Francine, my latest aid showed up here around 10:00 yesterday and almost scared Lois to death/ I didn't think anyone was coming. No one called about it this week and no one came Monday. She gave me a bath, did my laundry and left by non. This is fine. If they only come two hours twice a week, it works and isn't intrusive. I'm glad Bill and you are getting into this kind of groove.
Lar
Lar,
Catlain, Bill's hospice nurse (who is very good) came by yesterday. She doesn't give Bill a bath (that's my job) but she does take good care of Bill (and me) and gives us good suggestions for Bill's care. She also provides medication and medical equipment. She comes by once a week now every other week in person, the other weeks by TeleHealth, which works out good for us. Non disruptive. Make your suggestion to your home health aide Francine, I'm sure she can accommodate you.
Ron
Jardley,
I am comfortable sharing my feelings with friends and followers of my blog. Of course I don't share all the details, then I would feel uncomfortable as my friends and blog followers undoubtedly would also feel.
Bill is out for his daily walk now, by himself. I'm trying not to hover over him too much even though he is still very weak. He is careful not to fall. I have to give him some independence so he can feel some sense of self worth. He is so frustrated that he can't do what he used to. All I can do is remind him how much I care for him and for him to be comfortable and enjoy each day as it comes. So many others in this time of COVID don't have that luxury. Bill and I are so fortunate that we do.
Thank you for your comment.
Ron
Woody,
What a nice comment you left on my blog. Thank you for sharing your life with me. You're right, why is it always about urine and feces? Seems that way doesn't it? My longtime friend Lar ("nitewrit", see his previous comment on this blog) has encountered that situation many times. Always embarrassing but somehow we get through it, no other choice. So far I've been lucky. I just had to have Bill change his yoga pants because he has feces on the outside. He doesn't know how it got there but he was frustrated that it did. No problem, we have more than one pair of yoga pants he can wear.
Like you I am comfortable in my home here with everything I have accumulated over my adult lifetime. Those things always bring back fond memories that I don't want to ever forget while I'm still alive. You're also right about so many friends, former co-workers and relatives that have passed on. Bill will pass on too then I will really feel alone. I am so fortunate though to have Pat and Larry as friends who I talk to everyday even though we do it on FaceTime. My dream someday is to spend at least two weeks, hopefully a month every winter (February) in Palm Springs. Then the rest of the year here at our home in coastal Delaware, which I can continue to live in indefinitely (no mortgage, just cut back on the landscaping costs). Hopefully I can continue to live on my own with perhaps a furry friend.
Thanks again for your always thoughtful and informative comments Woody. I wish the best for you.
Ron
hopefully by now she showed up and the soup was scrumptious.
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