Being a Young Caregiver

Me in Hawaii at the top of a volcano.  Freedom.

While all caregiving has its commonalities, being a young caregiver definitely has its own unique challenges.  Being thrust into a caregiver role at a younger age, when my mom at the age of 57 had a debilitating stroke, I was faced with all the “common” caregiver challenges but at a time in my life when it was least expected and with absolutely no warning.  I immediately left my career, my home, my friends to move back home (2,000 miles away) to do everything that was humanly and sometimes inhumanly possible to help my mom.  I did this on instinct, and most people will say “well you do what you have to and I would do the same”; but as any caregiver knows this simple isn’t true.  Not everyone would do this. And really I don’t think you know what you will do until you are faced with it.  I myself had no idea how I would handle a sitation like this until it happened to me.  Being a caregiver, especially at a young age, is a huge sacrifice.  I don’t regret it, but sometimes I can’t help but feel that I am missing out on some of the best years of my life. Continue Reading »

Life after Clara continues…

I find myself much more in tune to senior citizens now.  One small example of this was recently when my husband and I were on a trip, taking a tour, and there was a retired woman in our tour group traveling alone.  At our first stop, we were told we could look around and to meet back in fifteen minutes at the tour bus.  I could detect nervousness on this woman’s part and I asked her if she was okay.  She said she doesn’t have a good sense of direction, and she was afraid if she looked around, she would not find her way back to the tour bus.  So she was just going to stand by the tour bus until it was time to move to the next location.  Andy and I took her under our wing, each stop she would stick to us like glue.  We both felt good that this woman that we just met felt comfortable with us, and she ended up being enjoyable company.  Even though at times I feel like a senior citizen magnet, there is a feeling of satisfaction in helping other people.  

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  

Another ‘side effect’ of Clara’s death was what amounted to panic attacks.  One day I was in a department store and had walked to the register to pay for my purchases and there were a couple of customers in line in front of me.  Without warning or cause, my heart started pounding, I broke out in a sweat and I felt like I had to flee the store, as if I had to be somewhere urgent.  At first I was startled and confused by what was going on.  I checked my watch; it was the time I used to have to be at dialysis to pick Clara up.  I was panicking as if I forgot to take care of Clara.  As I continued standing in line, I had to have an internal talk with myself reminding myself I did not have to leave to get Clara; that assignment was over.  When it was my turn to pay for my items, my heart had settled back into a normal rhythm, but I felt nervous, like when you have too much caffeine.  I actually experienced this several more times on other occasions, but I knew then to check the time first.  Sure enough, each time it happened was when I normally would have been taking Clara to or from dialysis.  My body and internal clock was still programmed to Clara time.  My friend was right, in time these things resolved themselves.

I reflect back on that conversation I had, well that spat I had with Clara’s daughter after returning from the cruise.  I wondered if through the years I had alienated them, by them having the impression that I was a one woman show with Clara’s care.  Then again, the reality was, I did do the majority.  I knew of others that never got any family help, so I was always happy for the break that would come on Wednesday and Saturday.  Upon reflection I decided that was more of an excuse on her part not to have to recognize that I truly was her mother’s caregiver.  That’s just my opinion of course.  I also think back to that fateful night that Clara broke her leg and when her daughter showed up and said, “Why didn’t you call me?  I would have come over and helped you.”  I remembered feeling incredulous that she would make such a statement.  I’ve wondered about all those times when they knew I was sick and did nothing additional to help with their mother.  Was all that was needed was for me to call them and ask for help?  Clara often hated to ask her own children for things that she thought would be an inconvenience to them, which I never could understand.  Was it possible at times they may have even offered to help but Clara told them not to worry about it?  I often used discernment in anticipating and filling Clara’s needs, so that was the expectation I had for her daughters when I was sick.  Could I have saved myself years of frustration and resentment by just calling them directly and asking for help when I was sick or following surgery?  I don’t think so, but I don’t know.  I never really tried it to know if it would have worked or not.  Hopefully, I will remember if ever in a caregiver’s position again, to have better communication skills with other family members as to my expectations or requests for help.

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  

Life after Clara…

All the times I had thought how much easier life would be once Clara was gone, but I never went beyond that thought.  What would I do once she was gone?  I did not realize how difficult the transition would be.  One of the most surprising side effects of Clara’s death was the recurring dreams I would have.  They were actually nightmares, because each dream would be about Clara falling and me trying to get her help.  When I would tell some of my friends about my recurring nightmares I would always be told the same thing, ‘You have no reason to feel guilty, you took excellent care of Clara.’  I don’t think guilt was the problem.  It wasn’t about the blame game.  The day Clara fell getting out of the shower, I felt was a combination of bad circumstances and honestly, the responsibility fell on her.  Once she made up her mind she was falling, despite my pleas not to, and released her body weight, she became like dead weight.  Even though Andy and Zack were home and are quite strong, I don’t think they would have even been able to hold her up if they were in my position.  For me I think it was more about all the things I had done, all the sacrifices I had made, all the times I injured my own body in my effort to help Clara-all seemed to be defined by the end.  Clara fell on my watch, plain and simple.  I don’t believe it was guilt, but sheer disappointment at my defeat at the end.  There was also overwhelming aggravation and anger at Clara’s doctor for ignoring my concerns the weeks prior to her death.  I felt the care I was trying to get her was blocked by the very person that was supposed to provide it.  No matter what the cause, the dreams were there, every night.  For almost two months I had a different dream but the theme was the same, Clara fell and I was urgently trying to get her help.  Once I would wake up from my dream, usually after about three hours of sleep, I was too anxious to fall back to sleep.  In part I did not want to take a chance of the dream continuing.  It would be crazy dreams sometimes based on actual events that had happened.  One night I dreamed about helping Clara down the steps of a friend’s house we were visiting.  Many years before, I had helped Clara down the steps of this friend’s house, without incident.  In my dream however, Clara fell down the final step.  For some reason my car was not available or would not work.  I placed her on a dolly, the kind that I’ve seen people use to stack up boxes on to transport.  Dreams are not based on logic; at least mine never are, so for some reason I had a dolly available.  I strapped Clara to this dolly; she is standing upright with bungee cords holding her on.  I am behind her trying to run her home to our house.  For several miles I was successful in keeping a fast pace then the wheels would fall off of the dolly.  I stood there with complete anxiety wondering how I was going to get Clara the help she needed.  I would wake up and my heart would be pounding.  I’m not so dense that I could not see the correlation.  The night Clara fell getting out of the shower, I was so close to successfully getting her out of the shower, and when I felt we were just about in home stretch, the fall.  Then there was the frantic cry for help, then Andy being put on hold with 911, then the hospital being backed up.  I would lie in bed logically trying to reason things out, but I was still too scared to go back to sleep.  One night, I talked to a very good friend of mine, who had become a caregiver at the end of his wife’s battle with leukemia.  He understood the dreams, the feeling of panic that you forgot to do something important, he said for me to give it time, it would resolve.  After almost sixty days of this, I needed sleep.  I went to my primary physician and explained my dilemma.  She prescribed a sleep aid for ten days to break the vicious cycle I was in.  I was so looking forward to getting peaceful sleep.  The first night I took the sleep aid I did not have any dreams, none that I remember anyway.  I slept for five hours, a bit short of the eight hours I thought I would get, but still far better than the three I had been getting.  For ten straight days I would sleep dream free, but only for five hours.  The first night off the medication I could not sleep at all.  I called for another round.  After really reading the information flier that came with the sleep aid, it explained that once you went off the medicine, you may experience insomnia for a couple of nights.  I figured I was just postponing the inevitable so decided not to take anymore.  The good news was the dreams did not return.  The bad news was I was back to getting about three hours of sleep a night.  Within days I was starting to get a bit more sleep, but have not slept a complete night since.

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  

My brother Jim actually delivered the funeral talk and was able to include some of his own personal experiences that he had in visiting Clara in the past, and during her last hospital stay.  During the funeral talk, at times it looked like Clara was breathing, her chest rising up and down.  I had to convince myself that my eyes were playing tricks on me.  The talk was finished, and the funeral director instructed the family members to pay their last respects.  As Andy walked out, he burst into tears and cried loudly.  Of course I was at his side trying to support him.  A co-worker of his was standing in the hallway, and he stepped toward Andy to hug him and Andy embraced him tightly.  It was sad to see him so broken.  What was going through my mind?  I was wondering if I looked heartless because I was not crying.  I was trying to think what was expected or acceptable behavior from me.  Should I cry too?  Would that help Andy or make it about me needing comfort from him?  As we walked down the steps to the family vehicle arranged by the funeral home, the pressure was over.  Once out of the funeral home and into the vehicle, Clara’s children were pulling themselves together.  It was nice sitting there so we could observe all of our friends as they were coming out of the funeral home, some of which we did not notice while inside.  After the cemetery, we went back to my mother’s house for a meal.  As the day came to a close, one of Clara’s daughter’s hugged me and thanked me for everything.  I was not sure if that was everything related to the funeral or everything related to the care I provided.  At that point, it was the first thank you I had ever received from her, so I decided to take it as a thank you for everything.  My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  

Revelations I’m not sure helped

The day of Clara’s viewing was Super bowl Sunday.  We had lots of support during the afternoon viewing, but a bit less in the evening once the game started.  Even Zack and Mike asked they could go home to watch the game.  For some that may have seemed disrespectful, but to me funerals are for the living.  If that was not helping them mourn their grandmother’s passing, I was not going to insist that they stay.  Alice, Clara’s old aide that had become her good friend was sitting out in the hallway.  I went over to her as she was quite distraught.  She expressed that she felt like Clara knew she was going to die.  She said in December when she had come by for a visit, Clara asked her to get out her jewelry and take whatever she wanted.  Clara only had costume jewelry, and Alice was not a big jewelry wearer.  Alice felt like Clara wanted her to have something to remember her by.  I was shocked to hear this but made me realize when I wondered if Clara was in the process of dying, she was wondering the same thing about herself.  

In the evening, one of Clara’s granddaughter’s came over and sat down next to me.  She thanked me for the care I had given her grandmother for so many years.  I was appreciative to hear those words; I told her I was fretting wondering if they held me responsible for her death.  She assured me she did not.  Some time later, one of Clara’s daughters came over to me and asked to see me privately.  The tone of her voice made me feel like there was going to be some sort of confrontation.  I was completely wrong.  She told me that it had come to her attention that I was concerned that they blamed me for their mother’s death.  She firmly assured me that was not the case.  They knew that I had done my best.  I apologized that Clara fell on my watch.  It felt like that part of things was settled.  The next day was the funeral, it was very well supported.  I went into the room to set up my funeral programs and found Maria, Clara’s last aide sitting outside in the hallway.  She told me that she felt Clara knew she was going to die.  I asked her why she said that.  Maria said that for a couple of weeks before Clara’s fall, when Maria would be ready to leave Clara would say, “Maria, give me a hug, you never know, I might not be here the next time you come.”  This was comforting yet torturous information for me to hear.  The fact that Clara died under anesthesia continued to comfort me.  The thought of Clara agonizing about her own death, made me feel so sad for her.  I could not help but wonder how many hours she sat there by herself scared, or when she was helped to bed if she worried she might never wake up.  I decided to concentrate on the positive aspect of things, that Clara did not suffer long term.

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  

Days of the funeral

When we got home, Mike and Tanya had arrived and it was comforting for us all to be together.  Andy called his sisters to let them know the arrangements.  I talked with them telling them I wanted to get a collage of photos together to display at  the funeral, if that was alright with them.  They agreed and later called and said they had some pictures they would drop off so I could copy them and use them also.  It felt like the division was back, us and them.  I continued to wonder if they blamed me for their mother’s death, since she fell on my watch.  I was at the craft store buying a large frame for the collage, when they dropped off the photos at the house.  There were more than I anticipated, and with what I had, I needed a second frame.  It was therapeutic for me to do this.  Once I finished it was time to get the funeral programs together.  I wanted to do them myself; because I wanted to be sure Clara had nice programs at her funeral.  How do you sum up over eighty years of life in two pages?  I felt satisfied with the dignity of how Clara’s obituary came out.  Before Clara’s health really declined, we had a photographer come to our house for some family photos.  Clara was in some of them, and the photographer snapped a few of Clara by herself.  There was a perfect photo for the front.   

We arrived at the funeral home early so I could set up the two collages I put together and set out the programs.  To my surprise the rest of Andy’s family was already there waiting for the funeral director to finish the last details before the viewing.  I went upstairs to set my things up.  I felt a bit nervous, but I was glad when I saw Clara lying in the casket looking peaceful.  They did not cake on the makeup as I have seen done before, and she really just looked like she was taking a nap.  Then an eerie feeling came over me and I rushed back downstairs to join the family and wait for permission for the official viewing to begin. 

My entire account is available at http://www.createspace.com/3469034 or at Amazon.com, just type in the title of my book, LIFE WITH CLARA – ONE CAREGIVER’S JOURNEY.  I appreciate all of your comments and wish all caregivers the strength they need to cope each day!  

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