Care Giving – Risks & Rewards

April 20, 2017 was my birthday. It was also a day that defined where we were with the disease that had changed our lives so incredibly. It was a beautiful spring day and Al wanted to play golf. We called his sister and they were up for golf so the four of us went to a local public course for 9 holes.

Playing golf was not a good idea as it turned out. With the day being one of the first nice days in a long time, there were quite a few people on the course. It was apparent right away that Al was no longer able to play. He didn’t know which club to use and was not able to locate any particular club in his bag. He was putting with his driver and was not willing to change to his putter when I suggested it. And, to cap it off, he walked very slowly and we soon had people backed up behind us. Needless to say, it was not a good experience. But bless his heart, he had a good time.

After that day, he suggested that we play golf several times during the rest of spring and then summer. I would always find an excuse,,,,,it was too hot, I didn’t feel like playing, etc. Finally one day when I made some excuse not to play, he looked at me and said, “Do you and Linda think I’m going to go crazy on the course or what?” I assured him that wasn’t the case. After that he rarely mentioned golf any more.

He began staying inside more as summer moved on but would sometimes come out to the patio when I was mowing the grass. He would generally sit there a while or walk around on the patio and watch me for a bit before going back inside. He began sleeping a lot. In fact he was soon sleeping so much (15-18 hours out of each 24 hour period) that I grew concerned and mentioned it to the doctor. She said that sleeping a lot wasn’t unusual for people with Alzheimer’s.

I missed him….I missed talking with him & watching TV together, and I missed having meals with him. I began to feel very isolated and alone. I sometimes realized that I had gone through a whole day without combing my hair or putting on mascara. I found myself wearing sweats or shorts depending on the weather. I realized that I had lost something personal and important… pride in my appearance.

As a rule, his sister Linda and her husband were the only ones that visited. Al didn’t like others around. I think that was because he didn’t know what to say or do when someone other than his sister or I were there.

We became even more isolated. But he was happy and I did the best I could to keep him comfortable. Sometimes at night I would put my arms around him, hold him close and wish that I could have him back the way he used to be. But of course that wasn’t possible and I often went to sleep with silent tears drying on my cheeks.

As I’ve mentioned earlier, I didn’t have anyone to share my most intimate feelings with when my husband’s illness began. It was hard to accept and even difficult to acknowledge the feelings generated by the turmoil in my every day life. My feelings of anxiety, incompetence, frustration, hurt, anger and fears filled me and I really needed to vent. I needed to talk to someone, but who? Who would understand the vastness of my feelings?

Two of my close friends, my son and daughter-in-law, and my sister-in-law were always willing to listen but I often had difficulty expressing myself. I found it hard to fully describe what our daily life was like and how the changes in Al’s health had leached out into every aspect of our life.

I had many concerns about not only his well being but also about my ability to handle everything. So in 2016, I began writing a blog (www.fohshallqueen.wordpress.com) in order to get these feelings out where I could perhaps better understand and deal with them. Many of those posts are included in this blog.

On June 15, 2018 I posted the following:

The last few months of 2017 were not good. Not only was my husband’s condition deteiorating but I was going into overload, often feeling LOST and LONELY with no idea of how to handle some of the problems that arose.

For instance, when he would be up till 2 or 3 AM, walking through the house, saying, “I want to go home” over and over and nothing I said or did could appease him, I felt helpless. Several times my solution for this was to take him out in the car and drive around for 30-45 minutes. My thought was that maybe by taking him out he would feel that he was home when we returned. This didn’t work. Our late night rides occurred anywhere between 10 PM and midnight from fall through December. It became difficult to get any sleep and I was getting to the point where I didn’t know what to do.

In early December 2017 he needed to go to the Emergency Room for a bowel obstruction. He would not get in the car for me to drive him there and instead he removed all his clothes and moved around the house, sitting down on every chair and bed, leaving stains everywhere.

I begged and pleaded for him to let me dress him and take him to the hospital but, even though he was in pain, he wouldn’t. Around 4 AM I had become so frustrated that I just went into the kitchen and beat my fists on the counter and wailed. Then I settled down and decided that calling 911 was my only option.

They were wonderful with him! They managed to get him dressed in underwear, slippers, and a robe and they were able to finally get him out of the house and into the ambulance.

It was a scary time for him and for me as well. They had to remove the obstruction manually which was very painful for him even though they had given him a couple of injections to relax him. He ended up in the hospital overnight and it was not a good experience.

It was becoming apparent that he needed more care than I could provide and frankly I was feeling physically, mentally and emotionally exhausted. Family members as well as our doctor suggested/recommended that I look at placing him in a facility. I resisted but, as things continued to slide downhill, I looked for, and found a lovely Memory Care Assisted Living facility close to our home and they were able to take him in quickly. I moved him in on December 28, 2017 and that was the most difficult thing I’ve ever had to do.

God help us!

One day in 2017, when I stood at the sink, doing dishes and looking out at the beauty of a summer day, I realized that I was not the same person I had been. That thought saddened me and added to the feelings of loneliness and despair that had become my constant partners.

I have always experienced JOY when surrounded by the sunshine, flowers and the smell of freshly cut grass. I felt JOYFUL when we sat in our gazebo late in the day, hearing the sweet birdsong that accompanied the otherwise quiet of the evening. But that day, standing at the sink, I did not feel any joy and, in fact, I felt no emotion except that of being lost and not knowing who I was anymore.

I have always had a lot of interests, reading, golfing, writing, crafting and working at my computer. I loved to take care of my garden and I really liked to bake. I was a social person and involved with different groups in pursuing various interests. Al and I went out a lot and enjoyed being with friends for dinner, cards, or golfing. We also enjoyed each other and had some wonderful conversations.

But that day I felt the loss of the person I had been. My shrinking world now primarily consisted of our house. We had gotten to the point that most of our time was spent indoors even on beautiful summer and fall days. I missed contact with others. Visitors made him uncomfortable so I discouraged visits from everyone except his sister and her family. He wanted me with him all the time and didn’t like for me to talk on the phone for any length of time so I discouraged friends from calling.

As I stood looking out the window that morning I realized how small and secluded my world had become and I also knew that I had lost my contact with the outside world. I felt like we were isolated and totally out of touch. It was not a good feeling!

I felt the loss of my former self and I wondered…..is this all there is? How do I find my joy and zest for life again? How can I be a good wife and a good caregiver when I can’t even find myself? It was a frightening moment for me…..how could I function normally when I didn’t even know who I was anymore? I felt empty….all used up!

Even though it had taken me quite a long time to realize that I was a caregiver and a while to adjust to my shrinking world, it was a shock to realize how it was affecting me. My husband had always been my rock, my champion, my encourager, the one who made everything all right in our life. And now he was no longer capable of doing those things and, since we had no children, I was alone in making decisions and in caring for him, our home, and financial obligations. I wondered….where did caring for myself fit in?

All my original fears and doubts about my ability to take care of him and of the tasks associated with our life resurfaced. And now I also had a new worry…..how could I find myself again? How could I find my way back into a normal world?

Although it is normal for a caregiver to feel sad, frustrated, angry, lost and lonely, it is also important to remind yourself that these feelings are normal and that it is OK for you to experience them. But also keep in mind that you MUST FIND TIME TO TAKE CARE OF YOURSELF SO YOU DON’T GET LOST in your shrinking world.

September begins the season of holidays. Many of us will find ourselves celebrating Labor Day, Halloween, Thanksgiving, and Christmas as well as other special holidays/events, and occasions. And of course there is extra time spent shopping, cleaning and cooking for every special day. This extra work increases the possibility of frustration and losing your patience. It also makes you tired and more apt to be a little short and maybe cranky with others.

So the question arises…..how do I work all of this into my daily life as a caregiver? How do I incorporate all this into my already busy life? How do I take care of my loved one with all the distractions around me? How will all this extra activity affect them?

But what really concerns you is whether or not YOU can get through these days….are you strong enough physically and emotionally to get the extra work done and still take care of your loved one? You ask yourself, “can I handle the stress”.

From my own experience I can tell you that it isn’t going to be easy. But there are a couple of things you can do to help you get through it. First and most importantly, you MUST TAKE CARE OF YOURSELF! Simplified that means that you get enough rest, eat a good balanced diet and that you manage to spend some time outside the home and away from all the hub-bub of the holidays. Go out for a walk, have a latte or a sandwich, read a book, write a letter, or just sit and enjoy the scenery.

Taking care of yourself also means accepting help from others. You may have to ask for help but get it one way or another. If there are no family members near, then call on one of the agencies in your area that will be able to supply an aide for a few hours a day several days a week. Friends and neighbors are usually helpful too.

You can also consider simplifying your celebrations by cutting down on the number of guests, using an outside source for food, and even hiring house hold help for cleaning, serving food, etc. Above all….. DON’T TRY TO DO EVERYTHING YOURSELF.

Now is a good time to remember my Caregiver’s Rules and lean on them to get you through holidays/events without completely losing it.

So, just to refresh your memory, my Rules 1-5 are listed below:

• #1 – “Always watch my tone of voice, keeping it friendly so that I don’t appear to be bossy, critical, or harsh.“
• #2 – “Accept the challenge/problem that has presented itself and then look for, and find, a workable solution.“
• #3 – “Keep life as simple as possible while adjusting to the changes around me.“
• #4 -” Look for, find, and savor the good moments.“

And finally, Rule #5 is to….

• #5 “Live in the moment.”

Here are a few things that I’ve learned during my time as a care giver.

First of all, consider your loved one and how they will feel being around a lot of people or in a strange place. You may want to limit the number of people around at any one time.

Be cognizant of the fact that your loved one may not know who the people around him are and the noise or activity may be frightening to him. He may want to go to his room and get away from it all. Be sure to watch for signs that he is tiring, getting aggitated, or restless.

If your loved one is incontinent, he/she may be embarrassed by “an accident”. Be certain that you ensure visits to the rest room on a regular schedule or when you feel/sense they need it.

If your loved one has problems feeding himself, be sure that you make accommodations for feeding him in a private place. Also make certain that whoever assists with feeding is someone he knows and that they are aware of the pace of eating and drinking. Do not rush this process or change it because of the holiday and the possibility of a very different menu that day.

If your loved one is in a facility and you decide to take him to your home for dinner or, for opening presents at Christmas, remember that you need to keep a close watch on his reactions and be prepared to take him to a quiet room or even back to the facility if you feel it is warranted. Don’t force him to remain where he is uncomfortable.

I have heard stories of home visits that were very difficult and often embarrassing for the person who was ill, for the family, and others who were present. For example, your loved one might make inappropriate comments, have an outburst, or even a urinary or bowel accident. They may spill food or drink, cry, or experience some other emotional outburst; they may be disruptive and even aggressive. So be sure you know how your loved one will react in these situations before you decide to take him home for a special occasion. A home visit may not be good for either of you.

If your loved one has any type of dementia, Alzheimer’s or other, keep in mind that they cannot come into your world any longer so you must go into theirs. This simply means keeping things comfortable for them and not expecting them to be able to socialize or interact with others in the same way they did when they were healthy.

My Caregiver’s Rule #5 – “Live in the Moment” should be your guiding light not only during the coming months but also as you go down the road that you and your loved one will travel.

Your frustrations and sadness will increase during special holidays/events and that’s normal. Just try to keep in mind that you still have your loved one with you and that you can still enjoy the special times with them, just in a different way.

Whether your loved one is in the initial stages of a disease or has been fighting it for a while, and regardless of how hopeless things may seem at times, there are always some bright spots along the way.

Here is my Caregiver’s Rule #4:

Look for, find, and savor the good moments!

Although you may feel like those moments are few and far between, believe me when I say they are there….sometimes you just have to look read hard to find them.

Here’s an example of a good moment I found during Al’s illness:

I couldn’t leave him alone at home while I ran out for an errand so he ended up going with me every time I left the house.

One day in the fall of 2016 we had driven to the post office and when we returned, I stopped in the driveway and told him to get out and I would pull the car into the garage. He just sat there smiling at me.

I kept asking him to get out and finally, after several minutes, I got out and went around to the passenger side. I asked him again, and when nothing happened, I tried to lift his legs to help him get out. I was beginning to get frustrated and wasn’t sure how I was going to handle this challenge. He was much too big for me to manually get him out of the car. Then he got out!

I was so glad that the problem was solved. I walked back around the car to the driver’s side and got in only to see that he had gotten back in the car! Hanging my head in disbelief and beating my fists on the steering wheel in total frustration, I again asked him to get out so I could pull the car into the garage. Nothing!

This went on for several minutes and finally, losing my patience, I got out and walked back around to his side. I pleaded with him but to no avail. Then, completely losing my patience I raised my voice and said, “GET OUT OF THE CAR”! He got out and walked into the garage as if nothing unusual had happened.

We went into the house, had a quiet afternoon and then had dinner. That evening, as I was getting him settled in bed, he looked up at me with the sweetest, most angelic smile on his face and said, “I like you so much better than that other girl”.

I realized he was talking about ‘that other girl’ who had yelled at him. I had to laugh at that and the guilt I had been feeling for yelling at him suddenly went away.

After I thought about the events of the afternoon and evening, I began to see the humor and I laughed at my walking around the car twice, and even about my yelling at him. I realized that ‘that girl’ and the one tucking him into bed were, in his eyes, very very different people.

I also realized that I had found some humor in our otherwise routine afternoon and I vowed to seek out those moments from now on.

Many months later, when he was living in a Memory Care facility, I related this incident to the Support Group one evening. Everyone got a big laugh out of the story and the leader has since told me that she has related it to other support groups and everyone loves it.

So despite all the aggravation, frustration, irritation, and guilt feelings that moments like the above can evoke, the humor is there somewhere, seek it out and treasure those moments.

‘

As I mentioned in an earlier post, our lives changed with my husband’s diagnosis of Alzheimer’s Disease in August 2016. Where changes had, for the previous year, been less noticeable to those not with us everyday, they now were not only more noticeable but they also affected both our lives in different ways. So, as the changes in his condition became more consistent, they also became more distracting and harder to deal with from my perspective.

Tinker, Tailor, Soldier, Spy is actually the title of a best selling book from a few years ago and, while none of these professions apply directly to me, that title keeps rolling around in my head, reminding me of the many hats I must wear these days.

On any given day I may wear find myself wearing the the hat of housekeeper, cook, laundress, chauffeur, plumber, gardener, bookkeeper, financial advisor, banker, dresser, barber, lawn care, planner, life coach, and on, and on, and on.

How do I feel about all this? Frustrated at times, resentful at times, tired sometimes, and always worried, but also somewhat pleased that I am able to do all those things for someone I love. Actually I feel quite good about my ability to keep our life together in the face of the Alzheimer’s that has turned my husband’s world, and mine, upside down.

About this time I created what I call “Caregiver’s Rule #3” which is,

To keep life as simple as possible while adjusting to the changes around me.

Many days I feel lost and struggle to keep myself grounded. But there is usually a happy moment in the day that revitalizes me and keeps me going for another day.

And, that’s what I strive for…..one more day!

Yes, every day brings its own surprises, some good ones, some funny moments, and then, usually, some that bring a new challenge and creates the need for some “out of the box” thinking. Things are different for me now and generally not adaptable to old ways of doing things; creative solutions are often called for.

On any given day I will probably feel one or more of the following:

• Hurt
• Angry
• Frustrated
• Helpless
• Alone/Lonely
• Incompetent
• Inadequate
• Lost
• Sad
• Hopeful
• Exhausted

I think the hurts, the sadness, and the frustrations come with the territory….dealing with unexpected changes will absolutely cause these feelings plus others that I haven’t listed here. Seeing your loved one suffer the ravages of disease is hard and will of course affect your feelings. How we choose to deal with our feelings will often offer a path to conquering the changes in, and around, us.

I found myself using a technique I had learned while still working. In my job I dealt with a management consultant that was not only a skilled leadership development specialist but also someone that was very wise to human ways.

One of the important lessons learned from him was what he called, “I” messages. That simply means that instead of accusing another person (or a situation) of a wrong doing that affected you in some way, you would instead relate it to your feelings.

For example when someone has said something that was hurtful or damaging to you, instead of saying something like, “I don’t like it when you say things like that to me”, you would confront the issue by saying, “I feel hurt when you make comments like that.” You are sending an “I” message by stating how you feel.

Now, with that being said, I want to again say that this blog is not about the changes that are occurring in my life right now but rather about HOW I FEEL and HOW I REACT to these changes. By sharing my feelings with you in these posts, I am sending an “I” message.

Thankfully I have family and friends to turn to but I can also turn to these posts as a way to send my “I” messages.

Alzheimer’s, as with any debilitating disease, generally will bring new challenges and/or problems almost daily. And when those challenges or problems arise, it is most often left for the caregiver to find a way to cope with the issue.

As an example, my husband who was then about half way through the middle stage of the disease, began not wanting to get into the shower. After several days when I had to practically force him to get into the shower and then, while watching him closely, it occurred to me what was causing his behavior. It was simple really…..he no longer knew how to turn the water on nor how to adjust the water temperature!

After thinking hard about how I might resolve the problem, it made sense to me to have him get into the shower before the water was turned on and then I could reach in, turn the water on and adjust the temperature for him.

Of course it was pretty obvious that I was helping him and I felt uncomfortable doing it. I also felt like I needed to explain why I was doing it and didn’t feel that was something I could do. I didn’t want him to know that I had noticed he was having a problem.

So I simplified it by getting into the shower first and then when I stepped out, I left the water on for him. That seemed to work better for a while. However, it became increasingly difficult to get him to step into the shower regardless of my efforts. I then started getting into the shower with him but he would stand back away from the water and only move to stand under it when I coaxed him and even then, he would move away quickly, hardly giving me time to rinse the soap off of him.

One day he really tried to step into the shower without my coaxing but would back away each time he tried. When I encourage him to get in, he looked up at the water coming out of the shower head then looked back at me and said, “I’m afraid it’s going to just cut me to ribbons”. I held his robe for him and we turned away; there would be no shower today.

That just broke my heart! My 6 foot 1 inch, 225 pound hard working, strong, athletic husband was feeling a fear so intense that he couldn’t overcome it. I had to turn away so he wouldn’t see my despair.

Now that I knew it was fear causing his hesitancy and not wanting to subject him to that fear any more than necessary, I suggested that I give him a sponge bath. We tried it but it didn’t work out well as he would became agitated sitting in the chair while I washed him.

This was when I learned “Care Giver’s Rule #2” which is to accept the challenge or problem that has presented itself and then to look for, and find, a workable solution. Since the disease had made him unable to come into my world, I must now go into his.

At this point I still didn’t fully recognize I was functioning in a care giver’s role. We still had many good days, hours when we enjoyed a good laugh, a tall drink while we sat in our gazebo just talking and enjoying being together. We even had some conversations that weren’t too far away from what might be considered normal. We made plans for the future and that was difficult for me because I knew in my heart that the things we planned would not be in the future that surely would be ours.

But for now my goal was to help him get along in life, to make things easier for him and to hopefully give him some joy. I wanted him to feel that he was still the man of the house, my protector, my security.

I also wanted and needed to take care of him!