Caregiving…..Screaming is allowed!

Here’s a term I hadn’t heard but am very familiar with. I have caregiver burnout in part due to COVID-19. All these year’s I’ve been caregiving for my mother I have had little “breaks” where I could get away. Sometimes for a week other time for 2 weeks. In fact I had a mission trip to Guatemala with Joyce Meyer ministers scheduled this year. We were leaving the last Saturday in April, Whelp you know that didn’t happen and now it’s been close to a year that I haven’t had a break.

Last year in July, when I retired from the Army, I went to Malaysia and that was fantastic. I was blessed to schedule my “breaks” every 6 months months as I look back now. Which is just amazing but now with the pandemic no one is or should be going anywhere.

I wake up on the weekends and think “boy it would be nice just to sleep in until noon.” But I can’t so of course I get up and start the day by giving momma her meds then changing her and the normal hygiene rituals everyone does then it’s breakfast. After that I let her nap then I go about what I need to do in the house. Sometimes I get a nap in also! Then it’s time to check her and then lunch then I could go on. It’s like ground hog day!

I can’t understand how something that I truly get joy from is also something I feel is holding me back. I am not resentful just exhausted. I think that Is my my caregiver burnout.

Oh my goodness my mother grinds her teeth ALL DAY LONG!!!! Some times it is so loud that I have to close the door to her room! She developed this last year once she became bed ridden. At first I thought she did it out of distress, which I guess is true, but in speaking with doctor’s they say this is something that Can developed with Alzheimer patients. Some days she good ,no grinding, then other days It’s all day long. I worry about her teeth will she grind them down to the nerve ..then that will be another issues to contend with!

She doesn’t have a problem with eating for now but this grinding business is getting on my nerves!

Over the last week I did a little looking over my shoulder. Remembering when momma first came to live with me. At the beginning the honeymoon phase, then there was the two individuals coming together yet something was preventing it…Alzheimer’s. Then there was the never ending challenge of trying to bring order into an otherwise unpredictable environment. Now there is a routine and a calm. It’s hard to admit but now that momma has lost her mobility it is easier. Easier in I no longer haVe to be concern with her failing (although she never did)or her getting into things she shouldn’t, the push back she sometimes gave when it was time for a bath, or to go to an event. I no longer have to get her dressed and determine what she will wear. And lastly, the stress of “monitoring” her when we were out, you know making sure she wasn’t eating off other peoples place…which she would, or not wanting to leave when it was time or her spitting out food. None of that is a concern anymore and I was left with the question of would a trade now for then?

Well, if I am honest I would say no. The amount of stress that I was under was hard, I mean very hard. Now I don’t feel that and I know that momma is safe, she with me! I definitely would not want to go through the process again, believing God orchestrates our lives specifically for the journey He has laid out for each one of us. I can’t have your life and you can’t have mine, nor should we. He equipped me to be MY mother’s caregiver for this particular season and somehow it fits into the puzzle of her and my lives. So I try my best not to look back and lament on what was or what wasn’t. I concentrate on NOW and how I can be my best self.

Momma is still momma! The one thing she still has is her personality. Last weekend I was busy cooking up Mediterranean dishes AND she ate all of them. It was so funny because Friday I told her that I would be making Shakshuka and that it was going to be really good. She actually smiled and nodded her head. So last weekend we had Shakshuka for breakfast and a Tuna olive load for lunch. I made a Shrimp scampi but didn’t have any white wine so used red…it was delicious! Today I made a creamy Tumeric and parmesan Spaghetti AND she ate that also! My girl:-). She’s still got a healthy appetite!

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This week was a long week, long because Monday was a holiday so my caregiver was off. Yes I give her the holidays because I know that I will be home. Perhaps that’s generous of me, I don’t know but I do think it is fair. So when a holiday is approaching I always tell my mother “It’s you an me this long weekend kid.” Some times she will respond with a smile or and “Oh” which is funny but now and days she doesn’t.

I wonder what goes on in her mind now. I can come into her home thinking she is sleep because she’s quiet but there she will be, eyes open looking at her ceiling fan which for some reason she finds very interesting. I’ll come in and she will cast her gaze toward me and I’ll ask “Whatcha doing, huh?” As I lean in to give her a loud smooch! Of course she doesn’t respond, not really, but it’s just something I do.

Deborah talks to momma all the time, which I think it good. And momma responds but more like reacting with grunts, smiles or some words that may or may not be applicable to what was being said. But then there are those times when she seems to be on point. I can asked her if she is full from the meal and she’ll nod, or Deborah will ask she if she can comb her hair and Momma responds with “No”. Then there are the times when she is going some where, she’ll comment that she either has to go or will be going or “comE on” to one of us. We respond with “where are we going?” But she doesn’t tell us. It’s funny to us. I don’t know whether she is reliving something or what but it is interesting.

Then there are the times when she’s having a bad dream and will wake up fretful. Deborah or I will reassure her that she is here with us and kiss her. Once again not sure where that comes from. She doesn’t appear to be in any pain so I just reassure her.

This disease is so unpredictable in a sense because where there are commonalities there is still allot of room for it to “effect” the individual different than it does someone else. I had a uncle on my father side who died from Alzheimer’s and he walked until it died. I have read and heard of stories of individuals being diagnosed with the disease and then dying within one to two years, then there are the stories of individuals having the disease for 10-15 years.

It could easily be like ground hog day here but momma with her phrases and interjections keeps Deborah and I laughing. This past week as Deborah was feeding her Deborah was talking to her, Deborah talks real loud, Momma opened her eyes (yes she eats most times with her mouth wide open but eyes shut) and said “I am eating” and closed her mouth. We both took that as a clue to hush up! Lol

This past week I enlisted a probate lawyer to help draw up a trust for my mother. I had a will that was done by the military last year, I had a will and testament, living will, surrogate health care designee and a springing power of attorney. What I discovered was shocking. First, the will would not guarantee my will would not be contested and out of probate, and secondly FL doesn’t honor sprinting powers of attorney (this allows the individual named as your representative to action on your behave IF you are incapacitated) They only have regular powers of attorney with are effective the moment that are signed.

So I was left with the decision to either keep what I have or spend $1,500.00 ,that is with my military discount, and do a trust. I prayed on it for two days and determined that it was the right thing to do to ensure that in the event I preceded my mother in death she is taken care of and that those I have left to help her and adminster my will do not have to worry about it being confessed.

As the lawyer, Dennis, walked me through the worksheet and we discussed what I wanted done. We put into the trust everything that would be needed to continue the care for my mother. My caregiver has stated that she wants to continue carIn for my mother. This brought tears to my eyes, knowing that she loves my mother that much to continue to care for her. My representative which will be one of my cousins will liquidate assets to ensure that the caregiver has everything she needs to continue with the care for momma. Dennis also told me that by putting my home and all assists into a trust, these assists cannot be viewed as assets by Medicaid which would disqualified my mother for services. That was a huge eye opener!

I guess you can say this was a productive week. Completing the worksheet with Dennis (over the phone) made me reevaluate my relationships and really think about how I wanted my assists to be distributed. I found it to be refreshing because now I know that those people who are close to me and have helped me will not be hindered by my departure.

Caregiver tip:

Momma continues to do well, Angela came for her monthly visit and all is well..with the exception of a small rash my mother has developed on the right side of her neck. I notice it because it smells even though she is bath daily. It was red and looked raw. Angela stated it was yeast rash and noted that it is on the side where my Mother drools a little. Since saliva is acidic this contributes to the rash and the fact that my mother keeps her head positioned on her right shoulder making challenging to feed her because her head is tilted to the right and doesn’t allow air to flow to that side of her neck! Anyway Angela prescribed some Nystatin Topical Power. It has stoped the smell and the redness is gone. We’re not he road to recovery!!!

This has been an emotional week for me and my family. One of my cousins, whom I am extremely close too, bid farewell to his mother yesterday. It started Monday with a text asking for prayer because she hadn’t been feeling well, then a CT scan that revealed blockage in her lower intestines followed by surgery the next day! Although the surgery was a “success” she never fully recovered she coded three times and needed to be placed life support.

My cousin had to make the excruciating decision to take her off. That Wednesday he had a conference call with his three closes cousins, all of which are only children as he, and we prayed. We prayed for God’s wisdom and strength. We all knew the right decision to be made, but that doesn’t make it any easier does it? NO!!!!

On Friday she was taken off life support and he stayed there with her until she took her last breath yesterday afternoon. What he described to me was beautiful. He had been reading her the Mother’s Day cards when she took in a long breath and then she left. Eye close as if sleeping.

What I learned from this week is that God is still very good! My aunt wasn’t in any pain in the end and her transition was peaceful. My cousin was able to be with her the entire time. Initially there were the protocols of the hospital and the gearing up in PPE even though she was a COVID patient and they won’t let him in the surgery lobby during her surgery, BUT in the end they allowed him to stay with her until she took her last breath. He was able to have closer and peace with her departure. It taught me how to “be there” for my cousin even though I couldn’t physically be there, he lives in another state. In fact all all us only children cousin are spread out in different states. I talked with him throughout this entire process sometimes until 2am what ever he needed. I called him first thing when I woke up and I was the first person he called after her departure. He stayed at the hospital until midnight not wanting to leave her….

Yes this week has been tiring but what I have determined is that God gives all of us exactly what we can handle. I told my cousin the mere fact that he was experiencing this was a sign that he would be able to bare it. God made us an knows the amount of stress, heart ache bull crap all of it take we can handle. So if your going through something know that you have what it takes to make it through.

This is Mother’s Day and although the pain of losing his mom is an open wound we all rejoice on this day knowing that she loved him and is now in the very presence of her savior!

Caregiver tip:

Know that you have been given the privilege of caring for someone else. Do not take it lightly God has entrusted YOU to take care of one of his sons or daughters. Honor him in how you care for them.

Whelp, another week and still house bound…at least somewhat. I get out to go to the grocery store and in the mornings I walk my neighborhood but honestly other than that I am pretty much in. Deborah and I were concerned because momma had developed a cough. You know the kind where you have congestion in the chest and phlegm but with momma we can’t cough it up. So I give her cough medicine and it subsides. However with this era of COVID we needed to be sure. Angel , nurse practitioner, came out three weeks ago and listened to her lungs and stated that they were clear. It’s just something that seniors develop when in the sedentary state and when you reposition them it loosen the phlegm up and they cough. So, that’s what we deal with. Most days she is cough free but then something changes…I’m not convinced of the repositioning, and then she’s coughing again. But considering that she has no bed sores and is eating well…we are in good shape.

There isn’t a day that goes by where I am not thankful to God that she is here with me. I realize more so now what at blessing that is. I can’t imagine having to be isolated from here EVER let alone during this era when people need to feel connected. One could make the argument that since she doesn’t realize where she is it doesn’t matter. However, I see my mother looking around at times. When I’m feeding her she opens her eyes and smiles at me. When I take her from her bedroom to the den in the Hoya lift she opens her eyes and looks at me the entire time until I have her in her chair. Then she sees where she is and then closes her eyes. I guess what I am saying is SHE IS STILL HERE. She may be extremely limited cognitively speaking but she’s till here.

I find it a bit hypocritical that in a previous post I stated how tired I was of caregiving. Really that hasn’t changed but I still wake up everyday happy to see her and that she is with me.

Caregiver tip.

When Angela came for her monthly visit she noticed that momma’s toes, where the first joint is, were discolored. She stated it was coming from the weight of the Bedspread and sheet and advised that we uncover her feet during the day. To let them air out (no socks}) to make sure she doesn’t develop any breaks in the skin. So we did that for two days…then momma started coughing!

So I decided that we could not follow that recommendation at least not in total. What we do is uncover the blanket from the feet (with socks) with just the sheet or just socks. Coughing subsided.

Wow it’s been, what, over one month since I have been confined, restricted to the house. Of course my mother has no clue that anything has changed but I do. But to be honest it hasn’t really effected me that much. Last week, I gave Deborah the week off just to give her a break so it was Momma and me. It was all good. I gave her three meals and washed her and tailored my day to my caregiving roles. Once you make up your mind and just do it, it will become more routine than a hassle.

Deborah will be back this week and I’ll be happy for her return. Her break gave me an opportunity to reconnect with my mother:-)

For the professional caregivers I pray that you are well and if you wish to work I pray that you are able to do so. We are in crazy times but know that I consider you to be “frontline” workers as well:-)

Caregiving tip:

I use two wash cloths through out the day. One is my mother’s normal wash cloth for her bath then there is the one used for your rear. This wash cloth gets changed daily. I believe it is a little more sanitary to have one wash cloth dedicated to cleaning her bottom during the day and other is used for the rest of her body.

It’s been over a month now with the world in a tailspin over the COVID19 virus. By God’s grace momma and I are fine. Deborah still comes to the house and between the three of us we keep our spirits up. Momma keeps us laughing because she is still vocal and will say some crazy things at times. I’ll hear Deborah laughing and know that Momma either said something or made a face. I am grateful that my mother is here with me. A couple of months ago I told you how tired I was of caregiving.

Well although I still am tired I know that I don’t want my mother to die as a result of this virus. When I think of the number of individuals who are suffering with the virus and how we as a community must isolate which prohibits loved ones from being near…that breaks my heart. The last thing I want is for my mother to transitions without my being there. You can call it selfish I don’t care. All I know is when she transitions I want to be there so I can kiss her goodbye and hold her hand as she goes.

Each morning when I wake I can hear her either grinding her teeth…yeah it can be pretty loud at times, or she’s talking. It wakes me up with a smile.

I pray that world governmentS share information and that we can get a vaccine soon and begin to get back to socializing.

Caregiver tip:

When momma transitioned to being bedridden It was so hard to get her to drink from a regular cup. So I recalled those sippee cups that moms use for toddlers so that’s what I got. Sipper cups, from Amazon of course, and now we don’t have a problem. Straws didn’t work because she would bite them:-(

Hey there, I pray you are ok in this new era of the COVID 19 virus. Momma and I are doing well. My private caregiver, Deborah, still continues to come because basically it’s just the three of us. I know that she can use the money and that she is going from my home to her’s. If she get’s to the point where she doesn’t want to come I will not protest. I enjoy having her company and she free’s me up to write and get to all the projects I have procrastinated on:-(

This week I thought about the people I have talked with over the years reference quality of life. It seems that we American’s define, what we would considered, a good quality of life as a life filled with love, and freedom. Freedom to do as we wish, freedom to say what we want, go where we want, do what we want, have what we want.

However, in watching my mother in the face of Alzheimer’s I have changed my definition of what having a “good” quality of life means. I focus on love. When I look at my mother and the love that both myself and Deborah surround her with I can see that she knows she is wanted and loved and That the environment is safe. She may not know us by name but she knows us as familiar funny faces who make her laugh, and cater to her every need. I know that because of this environment she has thrived. You recall what her physician said….. She’s not going any where soon. She also stated that part of the reason was the care we provide for my mother.

Yes I now she can’t move, can’t feed herself, can’t articulate what she wants (although I am convinced she doesn’t know that what she is saying is gibberish because she looks at me with the expectation of an answer!) but she is loved. And Love as allowed her to thrive with a debilitating disease.

Not only is she loved by the humans in the home, my cat Epony will gladly take her shift at watching Momma while Deborah or myself are busy.

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Caregiver Tip:

When I bathe my mother I use two basins. One is filled with hot water and the other lukewarm. The lukewarm basin is my rinse water. I use the hot water to soak the washcloth and lather then bathe momma in parts and sides. The left side is first and I start with the arms and breast. After I have lathered her I rinse and ring the washcloth in the lukewarm basin. I then placed the rinsed cloth back in the hot water and clean the soapy areas I just lathered. I use the two basin method because the lukewarm basin will get most of the “dirt” leaving the hot-water basin cleaner requiring me to change it less than the rinsing basin.