Tuesday, March 09, 2021

My New Normal


Bill waiting for trash pickup last Friday, his big event of the day. Bill now brings the trash cans back, a job he used to have before his accident, thus bringing his life somewhat back to normal.

Here at Casa Tipton-Kelly we're pretty well settling into the new normal. 

No more staying up all hours of the night. I used to go to bed around 12:30 to 1:00 AM. Two nights ago I went to bed at 8:30 PM and slept through the whole night. I do get up early, usually around 5:30 AM. 

First job in the morning is to change Bill's dressing on his right leg. He has edema on both legs. That means his heart isn't pumping enough blood to his lower extremities. His right leg began weeping (seeping clear liquid) shortly after he returned home last month from rehab. His hospice nurse recommended dressing his leg wound. She also prescribed an antibiotic. Both measures seem to have stemmed any worsening of Bill's edema. The wound is still there but not as bad. 

Every third day I have to help Bill get a shower. Actually I have to undress him, lead him to the shower, soap him down, all the while he complaining, and dry him off, then dress him, again while he is complaining, and then help him upstairs to give him is daily morning medications and prepare is breakfast of oatmeal.

That is just the beginning of my day. The other day we had a dust up. The usual, he made a suggestion to try to "help me", but actually would cause me a lot more problems than "help" me. The very first time we had a big fight in our fifty-six year old relationship was over him trying to "help me." I do all the cooking and cleaning up in this household. Bill insisted that he wash the dishes. I told him I prefer to wash the pots and pans and dishes before we sit down to eat (this was way back when we did eat together).  He wouldn't hear of it, he insisted that I leave the dirty pots and pans in the sink and sit down to eat and he would clean them later. I didn't see how this would "help" me. I come from a background where my Mother always left dirty dishes in the sink, resulting in gray, cold greasy dishwater. I vowed when I had my own household that I would never leave a dirty dish in the sink and especially not dirty dishwater. Well, we had furious fight over who was going to wash the pots and pans and I won. Over the years we have subsequently had many fights (arguments) over the same thing, which is really about control.

This time Bill wanted to remove the bed from his bedroom and replace it with a table so I could put all his wound dressings on that table. I told him I already had a system and I didn't need to remove the bed (which he doesn't use anyway). He wanted to take the table, which I was using, and put it in his bedroom. Again, this really wasn't about helping me but Bill taking control. You should see us driving. For several years now I do all the driving. But Bill still can't help himself, he is the ultimate back seat driver. More than once I've told him "Bill, either you drive this car or I do but we can't both do it at the same time. We're going to have an accident."

The condition Bill is in now, very weak, he is in no position to call the shots. The best way he can "help" me is to let me do my daily chores without his interference. I understand he wants to help but what he is really doing is again trying to take control. So when he didn't get his way he threw a fit and went to his bedroom, refusing to speak to me. I took my brother's advice (he was our Mom's caregiver) and establish who is in control. He said "You can't let them run the show because it's going to bring you down and ultimately them down" or words to that effect. 

After Bill cooled down we had a conversation and now Bill understands the best way for him to "help" me is to cooperate with me. I know what I'm doing. He wouldn't get the care he's getting from me from anyone else. 

Once a week his hospice care nurse visits to check on him. Of course Bill gripes and complains because someone is coming into out house. This has always been a source of contention between us. I have to patiently explain to Bill that she (Caitlin) is here to help him and me. His alternative is to spend the rest of his life in a nursing home. Would he prefer that? Of course he doesn't. Sometimes one has to get one's attention. I have his attention now, for awhile anyway.

Today we take our daily ride, something he would never get in a nursing home. I will make his lunch for him as I make his breakfast. I will help him dress and undress. And every third day I will help him shower, and he will complain. My once solace is that I am glad he's here at home and in his way he does appreciate what I'm doing. I am thankful he knows who I am, although he is often confused as to what day it is. I think I have him talked into spending a week at the hospice daycare center sometime in the next ninety days so I can take a respite leave. He was adamant against leaving our home for any reason. Now I think he sees it would help both of us if I got a reprieve for at least a week. It's not going to kill him to spend at week at the home like setting of the hospice day care center. And I am wearing down folks, but managing. 

For those of you who have never been caregivers, this is what you have to look forward to. Of course every situation is different but all of them have one thing in common. It is very time consuming because you're taking care of TWO people, not just  yourself. And you're taking care of someone who can't dress themselves and requires multiple medications, keeping track of which is not easy. I know one thing, if I ever end up in a situation that I need a caregiver (and I pray I don't), I will be a lot more cooperative. It's not all peaches and roses folks, it's life.

Have a great day everyone!


lexie said...

Thank you so much for sharing your days. Having done taken care of both parents in years past I have great admiration for you. I know how hard it is.

The care you are giving Bill shows how great a love you share.

I'm glad you realize the importance of a respite for both you. Any chance you can travel to one of your buddies?

VRCooper said...

Hello Ron,

I love a bossy man! Smile!

Your brother is right. It's a hard time for everyone in this type of situation. The person needing the care but is fighting every which way to maintain control/independence of their ADLs (activities of daily living). Yes, there will be dust-ups. Put your foot down and just kindly say "this is the way it will be." Yes, they will fuss/brood/bitch... But in the end, they will love ya for it. As I have said in the past, I have taken care of patients just like Bill. I let them fuss but keep it moving. Once it is all said and done they are comfortable in a fresh pair of clothes and feel clean after a shower/bath. Bill knows in his heart of hearts that you are stepping into the breach. He will let up in due time BUT let him make some decisions-what to wear, eat, and whatnot. But anything to do with safety, hygiene, healthcare-dressing changes, appointments...there is no negotiation.

I am glad that the married couple is settling into their routine.

Keep Bill moving every day! Move him from point A to point B! Walk with him outside. He will NOT sit in his recliner for hours on end. Bedsores-not going to happen on my watch. Not going to happen. Make him come upstairs for his meals. Snacks are a different story. Make sure he is getting his fluids. We don't want to have to deal with a UTI. Make sure is bowels are regular. Don't want to have to deal with impactions and enemas. And most of all, spend time with him, hold his hand, talk to him. Let him know that you still care and love him.

Be well,


Anonymous said...

Just wanted to pop on and send some sunshine and good thoughts your way!! Take it one day at a time. Try not to take it personally. Get good rest and know that we are rooting for you!!!

Jon said...

I always appreciate reading your detailed updates, Ron. It provides great insight into what you (and Bill) are going through. Bless you for being so kind, caring, and patient. Take care!

Breenlantern said...

“Love is patient, love is kind.
It does not envy, it does not boast, it is not proud.
It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.
Love does not delight in evil but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.”

Anyone can say “I love you.” Real love is action, and you show yours for Bill every day.

Wishing you both health, patience, and peace.



nitewrit said...


My pyrosis is kicking up. Iy is stress. I'd like to get up and do my thing, but I keep getting harassed. Yesterday was the Inquirer and now I may be broke. Good golly, Miss Molly. Give me a break.


Ron said...

You took care of both your parents? I can't imagine doing this twice. You understand how hard yet rewarding it is to care give for a loved one at the end of their life. Every day I count my blessings that I have this opportunity to help make Bill's final days comfortable and pleasant and memorable for him. Bill has a life well lived and it is ending as we wished it would, a slow fade out.

Ron said...

As usual, excellent advice from you! Bill is doing a lot of walking which is turning out to be good for his lower leg edema problem (I think). Also, we don't have to worry about bed sores because he doesn't like to sit all day in one position. He likes to be up and about even if it is only walking around the house here. Today is another mild day (high of 68 degrees) so he'll be able to walk outside as I will. I've been missing my daily walks too. Bill does fuss about getting a shower (tomorrow is shower day) but I know he does appreciate having one. He can't put on his clothes by himself, he needs help and probably always will the rest of his life. He's still unsteady on his feet so I have to help him in the shower. Last time we took a shower he almost pulled the shower curtain rod down even though there are three grab bars in the shower. I understand about letting Bill do some things on his own which, at first, I did reluctantly but I realized that is important to Bill but I do put my foot down when it comes to his health and safety and he understands that. Like my brother said when he was taking care of our mother, "The Sundown years your parent is like y our child." That's the situation Bill and I are in now. He understands what I'm doing is best for him. I try to accommodate him as much as I can but there are times there is no negotiation, I'm "running the show" as Bill says.
Thanks again Victor for your very helpful comments and suggestions.

Ron said...

Thans for stopping by. Always appreciate hearing from followers of my blog. Even though blogging is a form of therapy for me it is gratifying to know others appreciate me sharing my life experiences.

Ron said...

Always good to hear from you. I often think of you, alone out there on that beautiful wooded hillside in Tennessee. I hope you never need a caregiver but you do know you're only one fall away from a caregiver. Be careful and don't fall.

Ron said...

Yes, I do love Bill. I could never leave him alone. Although we've had our disagreements during our time together, and I've been temped to leave, I could never do that because I would always worry about Bill. So I guess I've been Bill's caregiver for most of our time together, I'm just more active physically now. I can't say it often enough but I am so thankful that I have this opportunity at the end of Bill's life to make whatever time he has left, comfortable and loving for him. So lucky for both of us.

Ron said...

Good to hear from you on my blog. Where have you been? You're going broke? What's going on?

Anonymous said...

You are right it is about control. What difference would it make, if you removed the bed he does not use, and put in a table? Make an old man happy, let him have his way sometimes, even if it is not your way. The number one form of psychological abuse of vulnerable adults, is do what I say, or you will end up in a nursing home. Please don't use that threat. I couldn't hold my peace any longer. Be kind to a sweet old man who has worshiped you, and is nearing the end of his life.

Ron said...

The problem with your suggestion is that removing the bed and putting in a table will make my job of taking care of Bill harder. I'm almost at my limit now. There are certain parameters I have to set and I am in control, not Bill. Giving in to every one of Bill's demands is not good for either one of us. My brother encountered the same problem with our mother when he and his wife were taking care of her. We are providing loving care. You say you "couldn't hold your peace any longer." Believe me, if you issued that threat to men when I'm providing 24/7 care and doing almost everything you request but not acceding to your demands that make my job harder, you would be out of here. Guaranteed. Actually, you comment wasn't helpful at all and I'm not "holding my peace" by asking you not to give me any more of your "suggestions" or threats.

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