What are nights for? [Caregiving]

What are nights for?

The title for this comes from some lyrics I heard once and I’m sorry that I can’t remember from who. The response was, “to separate the endless days” as either an answer or possible solution.

Caregiving and all that it can entail has been on my heart lately. I’m going to talk about our experience and it’s going to have to be deeply personal in places. The reason is that I see more friends, family, acquaintances and just the population in general having to deal with caregiving as our aging population increases. Spouses taking care of spouses, children and vice versa.

One of the first thing that I would like to say especially to those contemplating being a caregiver is that not everyone is cut out to be a caregiver. The second thing is that not everyone has a choice. The cost of caring for others is crippling in this country unless you can afford fifty thousand a year. Your spouse, significant other or support group needs to be totally invested. There is no dishonor in not being able to be a caregiver. My mom and dad tried taking care of her mom at one point in my life when I was a teenager. It was not good and ended badly. They should not have tried. They just weren’t cut out for it. That’s just the way it is.

My intention of writing this isn’t for recognition for us because many others are out there having done or are that are currently doing the same thing. If you have questions private message me. If you have something to add to the discussion please do so. I’m going to post this in two places, at my blog and here on facebook.

Caregiving can be as rewarding as it is demanding. Providing care to another can be vexing, frustrating, fulfilling, depressing, enlightening, emotionally draining, humbling, challenging, physically demanding, strengthening and more. You will find yourself at times going through every emotion there is in a day, sometimes within minutes. The caregiver often becomes the advocate for the person in their care. A child becomes the parent and there can be resentment. The caregiver also becomes a symbol of the ward’s inability to care for themselves. Paul would get mad at me. I would get mad at Paul. It isn’t unnatural to have that happen. Just remember to apologize and go on. When I see a caregiver being too abrupt, speaking too harshly or jerking their ward around too much I suspect that they should not be caregiving. Perhaps they only need a respite from the demands. Perhaps they need to look into other alternatives.

As a caregiver you will end up doing things that you never contemplated doing. If you have ever taken care of a baby, imagine doing the same things that you did with them only doing them with an adult. Dealing with the sheer amount of urine, bowel movements and cleanup can be daunting in and of itself.

You will make mistakes. Paul took up to 15 medications several times during the day a couple of hours apart. If we messed up his pills he paid for it. He had a bad day and there was nothing that we could do about it. Being able to keep track of and take their medications on time is perhaps one of the first things to go especially if any level of dementia is involved. The concept of time is a tough concept to teach children: time requires a higher functioning ability. (I can remember one of my boys asking me to explain about tomorrow. The next day they asked if it was tomorrow. My answer of tomorrow never actually gets here; that yesterday this was tomorrow but now it’s today did not resolve the issue.) I will never forget the look on dad’s face when the doc asked him to draw a clock with hands and show a particular time. He was unable to do it. There were other soul-crushing moments for him. You just have to accept them and move on.

The person in your care will have good days and bad days, especially if they have a debilitating illness or injury. Hopefully they will have more good days than bad for a while. Eventually the bad days will outnumber the good. You fight for the good days. You try to be positive. You try not to cry in front of them.

Just a little background to give my bona fides for being qualified to write on this subject. Shelley, my wife, and I along with my brother were caregivers for almost 17 years. My younger brother along with his new wife continues to provide care as of this writing. (Younger at our age is a relative term.) Shelley and I are done for now with providing care with the passing of her father, Paul, in June of 2015. Coincidentally, he passed away on the same day of the month that my father did in 1974.

We were fortunate in that in both instances of our providing care for family members we were able to start off slow with regard to the level of care that we needed to provide. It started with our mother in 1999 when she had a stroke and subsequent surgery to remove a brain tumor. Paul came to live with us in 2003. He had been diagnosed with Parkinson’s in 1997 and had finally reached the point where he was needing assistance in life. Mother passed on 2009. Paul in 2015. In both instances it was a blessing and tender mercy.

I have an Aunt and Uncle with children who went almost immediately to having to provide full time around the clock care for a decade for their son injured in an accident. My Uncle passed away during this time and my aunt soldiered on. I mention her because she served as my inspiration during dark times when I wasn’t sure that I was able to continue doing the job before me.

I don’t know if I/we have any lessons to impart. There is just our experience and perspective to pass along. In other words we just did what we did in the circumstances that we were in. We were fortunate to be able to pull it off. We provided for our loved ones. Mother and Dad were able to be in their homes when they passed.

Ideally the person that is being cared for is happy, cooperative and a willing partner in facilitating their care. It never hurts to dream and I’m sure there are instances where this happens. I would often tell doctors when Paul would express irritation at things that I would do in caring for him that I understood his position and irritation. I was the first face he saw of a morning, throughout the day and into the night. He heard my voice throughout the day. I was a cheerleader and coach. There were times he called me sergeant. He got sick of hearing my voice. I got sick of hearing me! Because of his dementia I would have to repeat the same things day after day. That’s the deal. Paul often didn’t know that his first time hearing something was my thousandth telling him.

For me I had to be dispassionate. I had a job to do. Paul and I only cried together a couple of times. I told Paul from the very beginning that I would always be honest with him. Dementia can be a huge hurdle to deal with in caring for someone. The hard part for me was watching someone that I loved dissolve mentally. Paul said that he felt like he was shrinking. He was a college-educated aerospace engineer and was unable to dress himself. Now, he could carry on a perfectly normal conversation even though his response time was slow. There are lots of different kinds and degrees of dementia. Paul’s particular type of dementia is called Lewy body dementia and spatial relations as well as sequencing are affected. His memory was also impaired in some ways. Now, he might try to put his pants on over his head even though he knew that was wrong. He just couldn’t translate that knowledge into doing it right. I spent hours with him trying to help him figure out how to get that ability back. We tried as hard as we could to help him hang onto the things that he was able to do for as long as he could before taking some function of daily life over because once you start doing something you’re going to keep doing from then on. Shelley would spend hours fixing computer-related problems for him until it finally became too much: computers require higher level functioning. Eventually, even on/off switches became too difficult for him to figure out.

This is important: there are medications that can help with dementia. We saw definite improvement with Paul when he started taking them, even though they won’t slow the progression of the disease.

Caring for our mother was an entirely different story and she would want me to say on record that she never could believe that we took her car away from her because she was perfectly capable of driving. PERIOD. (Paul, on the other hand, voluntarily surrendered his keys when his reaction time became too slow to drive safely.) Towards the last Kim was a variety of people to her. He would be one of her brothers long gone bringing her coffee of a morning. He could turn around, come right back into the room and be Kim.

She would forget at times that she was an invalid and unable to take care of her most basic needs. One incident that comes to mind is when Kim and I were changing her because she had wet through her depends.

“WHAT ARE YOU DOING?!”, She asked. I should really add a lot more exclamation points here in addition to using all caps.

“Well, mom, we’re changing you.”

“WHAT WOULD THE NEIGHBORS THINK?”

“They won’t know, mom, so it isn’t any problem.” (This was not a good answer.)

“I’M CALLING THE POLICE!”

During this time she tried to bite me several times. Then of course she forgot about this happening as well.

Caregiving can be an incredible strain on a relationship and household in every aspect. I can’t stress this enough. My brother had a marriage come apart while caring for our mother. But he soldiered on. Shelley and I had close to a zero social life and hadn’t been to a movie together in years. Finances can be challenging as well. If a home isn’t handicapped equipped retro-fitting can get very expensive even for just the basic necessities. Just building a ramp for access into the home can be expensive if you don’t have enough money to begin with. Paul did. He could also afford all the consumables like Depends, pads, wipes, lotions, cleaning supplies, etc. The washing machine was constantly running so you can figure increased utility costs and laundry supplies as well. All the doctor appointments will take a lot of gas. This list could go on but this is just to give you some idea of the impact. He was also able to afford equipment not provided by insurance or Medicare.

Many older homes can’t be equipped without major structural changes. The bathroom our mother had access to had a 28 inch door and no way to make it larger. She had to be carried in since she wasn’t able to walk and had a shoulder injury that prevented her being able to use grab bars. These are the kinds of obstacles that people often have to face.

Work can also present a problem because you will miss work if you have a job. Quite often people realize that they can’t do both and have to choose. Shelley had to work and when she got home she would spell me. I would try not to wake her when I got up at night to tend to Paul. He had a call button that would dial my cell phone when he needed something. I prided myself on being able to respond within a minute and a half.

You sleep and live in snatches. There was one year that I got one good night’s sleep. We had grabbed an entire weekend while my brother watched Paul. I was able to sleep a night straight through. I didn’t even get up to pee. I don’t say this like “oh poor me” because I thought that it was pretty special to be able to have that night and then remember how special a night’s sleep can be. We learned how to appreciate the smallest or even mundane events. Now I find myself with an attention span focused to incremental time.

I provided a little more detail than perhaps is necessary but I want to stress that caregiving can affect every aspect of your life. The days stretch out before you but the focus is on the day and what do you do tomorrow. My brother and I would often pray for just getting through the day and having the strength for tomorrow for one more day.

I use the words “can” and “may” often when talking about caregiving because every circumstance is different. I was not an expert on Parkinson’s disease I was an expert on Paul having Parkinson’s disease and how he was affected. Kim was an expert on our mother being an invalid. People respond to medications and treatments differently. What works for one won’t necessarily work for another.

When ultimately your ward passes there won’t be any medals given. All I can tell you is that there is joy in having done it, having made it. Our mother wanted to pass away in her home and by grace we were able to provide that. Because of her dementia she didn’t even know that she was in her home but that’s okay. We did. We knew that she was in the home where she had raised us and lived with our father. On what turned out to be her last night she looked so comfortable in her chair that my brother and I decided not to move her to her bed. We never did that. That night we did. She passed during the night in her favorite chair.

Kim and I were at a family dinner in Halstead, KS after mom had passed and couldn’t shake an uncomfortable feeling that we both had. Then we realized that it had been years since he and I had been in the same room together since one of us wasn’t with mom.

Paul’s ending was different. He had Shelley and I sit down on a Saturday and told us that he didn’t want to go on. Though this was not the first time he’d said that, it was clear that this time it was different. Because of the way the conversation went I told dad that I wasn’t going to put a pillow over his head. Shelley had to affirm that we weren’t going to end him. We told him that we were caregivers not life takers. We couldn’t stop doing our best to care for him. He was tired. So he quit – basically stopped taking food and water. We called hospice in on Monday and he passed away that Wednesday. 

What a blessing hospice care was! Thanks to a friend, we knew how to take advantage of this wonderful resource. Too many people are not familiar with what they do and how they can ease the end of life transition. If we had only known, we could have had the same comfort for my mom.

Paul had reaffirmed his faith with Pastor Rob previously and even now that still fills up my heart and makes me cry with joy.

Then after everything is over, after winning the struggle, after accomplishing the goal of tending to a loved one, guilt can set in. Shelley and I both couldn’t shake the anxious feeling that would set in at prescheduled times when we would have been doing something but we had nothing we needed to do. I suppose that it’s a form of survivor’s guilt. Guilt at wishing that I had done a better job. Guilt at feeling good at having a life again.

But above all else I want to say that providing care for another human being is one of the most intimate, beautiful and rewarding acts that one human being can do for another.

We would do it again in a heartbeat.