Sometimes You Have to Tiptoe Through the Tulips

For everything I faced in life, I always thought I could plan ahead and figure things out so I’d know what to do… until Ron got Alzheimer’s.

That was a big wake-up call! I took classes to learn about the disease and was slowly learning about the skills that were needed for caregiving, but knowing how to handle the crazy things that occurred, often put me on the spot.

For instance, there was the night Ron got up and went to the bathroom while I was still asleep. I woke up and saw he wasn’t in his bed and panicked. When I went out the bedroom door, I saw him in the bathroom across the hall. I nicely invited him to come back to bed but he wouldn’t budge! I held out my hand, but he didn’t take it. I jumped on the floor to prove it was safe. Nothing I did convinced him that it was safe to walk there.

Thankfully I had learned in the classes at the Alzheimer’s Association, that they sometimes see dark areas on the floor as a hole. But what to do? Though I certainly hadn’t learned about this in the class, suddenly I found myself singing “Tiptoe through the Tulips” by Tiny Tim. I took Ron’s hand and invited him to join me, imagining that there were tulips on the floor. It worked!!

Tulips

And that wasn’t the only time that I resorted to something kind of crazy in the spur of the moment to get his cooperation or to make my job easier.

I began to see that when I could let go of how I thought it “should” be and pay attention in the moment, I became aware of something that would be helpful… whether an action such as what I described, or knowing where to get information and ask someone for what I needed.

Learning that it was okay not to know, was a big step for me. As I wrote in Courageous Hearts

When I could get out of the way, stop trying to figure everything out, and not worry so much, I could be more present to what was actually occurring. Then, I could trust the process to show me what to do. The solutions were not so much a result of planning and doing, but of being present in the moment.

I am very grateful for the many helpful ways of being that I learned while caring for Ron, and continue to use them to navigate my life. Trusting the process and letting life show me was a big one. That includes making it up on the spot — even when it seems silly!

Posted in Alzheimer's / Dementia, Caregiving | Tagged , , , , , , | Comments Off on Sometimes You Have to Tiptoe Through the Tulips

Courageous Hearts – Value Beyond Caregiving

I was surprised by the comments my 31 year-old niece put on Facebook after reading Courageous Hearts.

Though I wrote it for those who were caring for someone with Alzheimer’s or knew someone with the disease, she does not fall into either category.

But she expressed kudos for the value it would offer to those who are on that journey and for her as well, should that ever happen to her partner.

I was very touched by her words:

My Aunt wrote a book about her journey of becoming a caregiver for my Uncle who was diagnosed with (and ultimately passed away from) Alzheimer’s.

I think it was beautifully written and I couldn’t put it down!

I was truly blown away by her story and I know that this book will help many many people.

If you or someone you know is embarking on a journey of loving or caring for someone diagnosed with Alzheimer’s, Courageous Hearts is an amazing resource.

It also inspired me to be more mindful and patient in my daily interactions with others.

Thank you, Cally.

Cally, Cyndy, Ron

Get your copy of Courageous Hearts:

Posted in Courageous Hearts Memoir | Tagged | Comments Off on Courageous Hearts – Value Beyond Caregiving

Caring For Ourselves

One of the things I heard over and over in the classes I took at the Alzheimer’s Association was about the importance of taking care of ourselves, as caregivers. The analogy was made using the example of preparing for take-off when travelling by air with someone who we will have to help should a problem arise. In that instance, we are repeatedly told by the flight attendants to put our own oxygen mask on first before trying to help others.

You MUST put your oxygen mask on first.

That relates when we are caring for someone who has Alzheimer’s as well. Though we’re not flying and don’t literally need an oxygen mask, we need to find ways to take care of ourselves so we can be there for them. As it states on their website, the Alzheimer’s Association notes,

The best thing you can do for the person you are caring for is stay physically and emotionally strong.

As a caregiver, if we were to let ourselves become depleted of energy or patience, we would be ineffective in providing care. Worse yet, that could have a profound effect on our own health. In addition, I noticed that Ron could sense when I was stressed and he was more agitated when that occurred.

Caring for ourselves is different for each of us. I was glad to have daycare programs so I could have time for lunch with friends or just run errands. One of the gentlemen I knew, would go home and work in his wood shop while his wife was at daycare. Some folks hire a person from an agency to watch their loved one at home, either while they are there or when they are away. I was lucky to have family members who could help with that, in addition to others. When I needed a longer break just to have some alone time or to go out of town, I made arrangements for Ron to go to “respite care,” where he stayed at a memory care facility for a week or two.

I attended a monthly support group for caregivers that was offered by the Alzheimer’s Association. I found that very helpful, as it provided a place where we could talk amongst other caregivers to share our ideas and experiences. No one else would have been able to relate to some of the things that we discussed! In addition, the Alzheimer’s Association offered classes that I attended in order to learn more about the disease and even reading their articles at alz.org, helped me navigate the journey more easily.

There are many other ways to take care of ourselves. When I saw things I was doing around the house that could have been done by others, I hired someone to help with household chores and cut the lawn. Nowadays, we can even hire someone to do our grocery shopping and have it delivered. At times, having premade meals delivered may be helpful. Whatever we choose, it’s important to modify the food for our loved one if necessary, based on their ability to chew, swallow, etc., even when we are the cook.

And finally, one of the utmost things to consider as a caregiver, is to respect our own desires and ability to care for our loved one. We may have our own physical limitations or we may not be emotionally cut out for the role. It’s important to recognize and honor those things. Everyone is different.

Of course, everyone’s financial situation is different as well. That must be factored in when considering care. In Courageous Hearts, Appendix 2, relates to issues to consider and resources available in obtaining long-term care.

And finally, I found the quote from Mark Coleman, that I noted in the Introduction of my book, very descriptive of my journey as a caregiver.

It is so often the hard places that encourage us to grow and find the strengths, tenacity, and gifts we may have believed we never had.

Posted in Caregiving | Tagged , , | Comments Off on Caring For Ourselves

I Was Pissed

From a recent article in the Gazette (or you may view it on their text-view version if you hit a paywall):

“I tell the truth about me,” said Cyndy, 75. “I was pissed. I didn’t know what to do. After I began to get my head around it, I describe having an insight — I’m the one who has to change. We couldn’t work together on things anymore. I shifted gears.”

The support I’ve received since publishing my book, Courageous Hearts, has been staggering!

I appreciate the media and every person who has purchased the book and spread the word to help get it into the hands of others who have found themselves in that same position of being “pissed.”

There is support for you, for them.

Sharing my story is just a small piece I hope will have a big impact.

Courageous Hearts, A Journey Through Alzheimer's
Posted in Caregiving, Courageous Hearts Memoir | Tagged , , , | Comments Off on I Was Pissed

Early-Stage Caregiving Challenges

The Alzheimer’s Association recently published an article sharing the early-stage caregiving challenges I identified, which I posted here recently as well.

See their article on Alz.org here.

Posted in Alzheimer's / Dementia, Caregiving | Tagged | Comments Off on Early-Stage Caregiving Challenges

Similarities Between Being a Caregiver and Parenting

It took me a long time to grow into my role as a caregiver for my husband, Ron. Early in our journey, I tried to fit what was happening into the life that was familiar to me and our relationship as I had known it.

I was familiar with being a parent but not with having a spouse with Alzheimer’s. I did not understand what was occurring and what would be required of me, nor was it something for which I had planned. I learned that being involved with the decline of a spouse or parent with Alzheimer’s is just the opposite of having a child.

An infant needs to be fed and to wear diapers. They need supervision and to know that they are loved. Little by little they can eat solid food and learn to walk and talk. Gradually as they mature, they venture further and further away from the supervision of their parents, eventually having their own independent lives.

If a person with Alzheimer’s lives through the duration of the disease, we will see just the opposite. They will go from a fully functioning adult to one who eventually cannot walk, needs to be fed, requires help with showering and toileting, wears adult diapers, is unable to communicate, and requires full-time care. And, unless we have had family members with Alzheimer’s or have worked in a field involving memory care, we probably are not familiar with the disease and have no idea what to expect. That was the case for me.

Becoming a parent was something for which my husband and I planned. I read a lot and took classes so I could be more familiar with my new role. After my daughter’s birth, I participated in a breast-feeding support group, and took her to a play group so I could hook up with other parents. At times, my husband and I would leave her with her grandmother so we could enjoy some time alone.

On the other hand, having a loved one with Alzheimer’s is generally not something that we anticipate. At first I was in denial. As I slowly became familiar with what was happening, I looked for ways I could learn more about the disease. Similar to being a parent, I took classes and joined a support group made up of others who were caring for a spouse or parent. I also used “respite care” where I could leave Ron for an extended stay, so I could have some time for myself.

In my roles both as a parent and a caregiver, I was challenged many times. I learned a lot about life. I learned that I didn’t always have the answer, and it was helpful to reach out to others for support. I also learned a lot about myself. I saw my strengths and my shortcomings. I learned that life is filled with opportunities and we can see them as such, or experience them as a burden.

Above all, I learned a lot about love. In Courageous Hearts, I spoke of “being love” versus being in love. There is no romance in either the role of a parent or a caregiver, but there is the opportunity to reach deep within ourselves and discover our ability to love. I quoted Phillip Moffitt in the book when I wrote,

“All love is already within you… as pure love without attachment or expectation. It is there for your discovery.”

That was one of my realizations, as a result of my journey as Ron’s caregiver. Looking at my role as a mother, it is apparent that has also been my experience with my daughter. And at this time in my life, it applies to being a grandparent as well.

Ron, Cyndy, and granddaughter.
Posted in Caregiving | Tagged , | Comments Off on Similarities Between Being a Caregiver and Parenting

Caregiver Challenges in the Early Stages of Alzheimer’s

I was not familiar with Alzheimer’s. I had never known anyone who had it. But the challenging behaviors and memory issues that were starting to occur with Ron, eventually became impossible to ignore. Despite me being in denial and wanting to pretend it wasn’t happening, I finally saw that I needed to do something. I sought help and learned more about the disease and it was ultimately determined that Ron had Alzheimer’s.

Below, I have described some of my experiences from those early years.

Ron & Cyndy
  1. I saw behaviors in Ron that I couldn’t understand. He missed appointments, wasn’t paying his bills, got lost while driving, and had difficulty with conversations. Yet sometimes he seemed normal.
  2. Suddenly life as I had known it felt like it was falling apart. I had never experienced as many feelings as I did during that time. I felt scared, alone, angry, uncertain, sad. I also felt that I could no longer trust myself because I was unfamiliar with what was happening and didn’t know what to do.
  3. I discovered that Alzheimer’s can be difficult to diagnose. Though Ron was seen by a local aging center, a geriatric psychiatrist, a neuropsychologist, and a neurologist, he managed to perform well on the tests and there never was a definitive diagnosis. It took me a while to realize that was not unusual. But the most difficult thing for me to understand was that they can’t fix Alzheimer’s.
  4. I was the one who had to change. I’ll always remember the morning when I had that sudden insight. It was challenging to accept this new reality and to finally understand that Ron was unable to do that.
  5. I learned to reach out to others. I discovered the local Area Agency on Aging. I connected with the Alzheimer’s Association where I was able to take classes, read the articles on their website, and join a support group. I also got help in caring for him, especially in the early stages when I was still working.
  6. I had to care for myself. I learned about the importance of caring for myself. In the classes I was taking, it was likened to putting our oxygen mask on first when flying, so we can be there to help those around us.
  7. I discovered the value in learning to change my perspective. It was hard to continually let go of “normal” and live with “uncertainty”, but I got to practice doing that over and over.
  8. I couldn’t worry what others were thinking. I saw myself being embarrassed when we were in public at times. That was apparent when I had to take him to the ladies’ room with me so he wouldn’t wander off; when I cancelled his order for beer the day we went out to lunch; when I had to apologize to others for what he said to them; etc.
  9. The challenges were constant. While caring for Ron I was continually challenged whether physically, emotionally, or in my ability to understand. At first, I was in denial, then I realized that I had to learn how to adapt and make the best choices I could, over and over again, as it changed from day to day.
  10. Grieving is a process. We lose the person we knew before Alzheimer’s. Then they change and we lose that person. This continues over and over until they eventually take their last breath.
Posted in Alzheimer's / Dementia, Caregiving | Tagged , , , | Comments Off on Caregiver Challenges in the Early Stages of Alzheimer’s

When Sh!t Happens

If you’ve taken classes, or explored the many websites dealing with Alzheimer’s, you are no doubt familiar with the fact that incontinence of both urine and stool are common. Generally, incontinence of urine occurs earlier in the disease than incontinence of stool.

However, like most all the components of Alzheimer’s, there is no set timetable. So understanding that anything can happen at any time with the one for whom you are caring, is important.

Yet we’re so used to having things be predictable, sometimes that has to be learned the hard way!

That was certainly the case with me.

“Shit happened” fairly early in the disease process, with Ron. There had been no indication of his inability to realize that he had to go to the bathroom, nor any close calls, until one Sunday when his son, Tom, took him out for breakfast. I was looking forward to having some time to myself that morning.

They had only been gone a little over an hour when Tom called. He said they were already on their way home, as, after breakfast when they were walking around the park, his dad pooped in his pants.

I was grateful to have learned of that possibility in the classes I had been taking, and to have at least gotten some medical gloves so I would be prepared, should it happen. After they got home, Tom and I worked together to clean up the mess and helped Ron with a shower, though he didn’t seem to be phased.

To my surprise, a few weeks later I needed to use the gloves again. This time when Ron was incontinent of stool, he was taking a shower. That incident really put me to the test, as I was by myself to clean it up, and believe me, it was a mess!

Since it was relatively early in Ron’s disease versus being in the Late Stage when incontinence of stool is more likely to occur, I was hesitant to have him start wearing Depends. I wanted to be respectful and honor his independence as long as I could. So his other caregivers and I kept a close eye on him and were able to identify if he was restless or demonstrated other signs that he may have to go to the bathroom. We were successful most of the time.

It was only after he became incontinent of urine on a regular basis, that I started using the Depends. After the first two incidents that I described above, it was a gradual process until he was totally incontinent of stool, so we still tried to help him to the bathroom as often as we could. Though it surprised me when that happened so early in Ron’s disease, at least I was aware it could occur with a person who had Alzheimer’s. I was glad I knew about that possibility.

And come to find out, many of the folks from my support group were experiencing it with their spouses as well. In fact, we laughed when we would call each other to get support or share ideas about dealing with shit!

Ron & Cyndy
Posted in Alzheimer's / Dementia | Tagged , , | Comments Off on When Sh!t Happens

No More Playing by the Rules

In order to live successfully, I had learned to play by the rules. I had always done my best to make sure I was doing it “right.” Then came Alzheimer’s. As much as I tried to apply that to our new situation, I could see it wasn’t working.

I wrote about that happening the night we joined Ron’s son and his family for dinner at their house.

We served our plates in the kitchen then carried them to the table in the dining area. I helped Ron with his plate first, then prepared my own.

As I approached the table to sit next to him and wait for the others to join us, he was already eating. The words spilled out of my mouth, reminding him that we needed to wait until everyone was seated before starting to eat. I sounded like a mom telling her child to practice good manners. It was taking me a while to understanding that our life had changed, and we were no longer “playing by the rules”.

An important part of caring for Ron involved discovering new ways to be in life, and letting go of what had been familiar to me. That was a steep learning curve, to say the least.

In the Prologue of Courageous Hearts, I referred to a poem written by a friend in which she described how the “obstacles” that we encounter in life can be seen as “high stepping stones,” which, when taken slowly and thoughtfully, build muscle and will, resulting in “a wider vision of reality.” Yet, building muscles takes practice. You usually have to go to the gym or lift weights over and over. Likewise, I saw that in caring for Ron I was getting a lot of practice. Slowly I began to notice that my vision of “reality” was starting to become wider and more accepting of the many ways our lives were changing.

I saw that my many attempts to get him to “play by the rules,” become the man I had known, and to “remember” weren’t working. Then, I had a realization one Sunday morning when I was making breakfast…

It was becoming very apparent that I needed to let go of my expectations and manage such occasions in a new way. I had trouble understanding that Ron was no longer able to change his behavior.

Suddenly, I am the one who has to change, flashed through my mind. It was more than just something I “knew.” It felt like the words were carved into my being that morning. All at once I was seeing our situation from a whole new perspective.

I remembered the quote from Victor Frankl,

When we are no longer able to change a situation, we are challenged to change ourselves.

~ Victor Frankl, Man’s Search for Meaning

And I have since learned about the wise words of Heraclitus,

Change is the only constant in life.

~ Heraclitus, Greek philosopher

Those quotes are important to remember when you find yourself caring for one with Alzheimer’s and find that the rules by which you previously lived your life are no longer working. That gives us the opportunity to change and explore a wider version of reality.

Ron & Cyndy

Posted in Caregiving, Courageous Hearts Memoir | Tagged , , | Comments Off on No More Playing by the Rules

Remembering to Grieve Along the Way

In the early days of Ron’s Alzheimer’s, I had a hard time acknowledging what was happening and I got mad when he couldn’t do the things he had done earlier in our marriage. I described that in my memoir, Courageous Heart, A Journey Through Alzheimer’s when I wrote:

. . . denial is a common reaction that family members go through when confronted by the unexplainable behavior of a loved one with dementia. I guess I was no exception. In fact, I remembered that denial was one of the stages of grief that Elisabeth Kubler-Ross referred to in her classic book, On Death and Dying, which I had read years earlier. And anger was one of the stages too. Clearly, both those emotions related to what I was experiencing with the loss of Ron as I knew him, even though he was still very much a part of my life.

It was hard to understand that the life we had known and the anticipation of aging together as we had planned, were no longer possible. I learned that Alzheimer’s didn’t end until the patient passed away unless they had a comorbidity such as heart disease, from which they died sooner.

But Ron had been healthy. I wondered how long he was going to live.

With the gradual progression of the disease, I found myself grieving over and over as the losses occurred. We couldn’t have the conversations we used to have and we had to cut back on the activities we enjoyed doing together. I could no longer get away as easily to enjoy time with my friends, as I had to make sure there was someone who could watch Ron. And I didn’t get the opportunity to have time alone at home, since Ron could no longer go out on his own.

I felt sad as I saw the losses that Ron was experiencing too. He lost his independence and could no longer drive, then became incontinent, needed help with showering and eating, and eventually required a wheelchair when he could no longer walk, at which time I placed him in a skilled nursing facility. There he could receive the care he needed, without putting my health at risk.

Since he then spent his time either in bed or in a wheelchair, he got bedsores, for which he received excellent care from the nursing staff. I wrote about that. “Seeing yet another decline in Ron’s physical health seemed to take me to a deeper level of grief. When I left that day, I cried all the way home”.

One evening I attended a support group at the facility and the chaplain pointed out that

The grieving that occurs with Alzheimer’s is not just about the loss of the person, but the loss of the person we then got to know, then the loss of that one, and the loss of that one.

That was a perfect way to describe what I had been experiencing.

The final loss of Ron occurred about nine years after I began to notice his early symptoms. That was a day of great sadness, though, I had been preparing for it, and grieving along the way. And of course, the grief continues when I hear a certain song that reminds me of him, read one of his poems, or participate in in activity that we used to share.

Cyndy & Ron Noel
Cyndy & Ron Noel
Posted in Alzheimer's / Dementia, Caregiving | Tagged , | Comments Off on Remembering to Grieve Along the Way