When someone has Alzheimer’s Disease, or any form of Dementia for that matter, their family and friends know that there will be moments of clarity, amid many days in the fog. Those are the precious moments. Such was the case a few years ago, when my first cousin once removed, Carol Schumacher Carlson and some of her kids went to visit my Uncle Bill Spencer, who is Carol’s cousin. I’m not sure how long it had been since Uncle Bill had seen Carol, but it was one of those wonderful days. He looked at her and said, “Well, Carol, how have you been?” It was such a sweet moment for both of them. I’m sure that Carol expected that her cousin would have no idea who she was, but he knew her.
I have had those moments when I have been so pleased that the person I’m talking to, knows me and times when they didn’t. I can tell you that the times they know you are far better…but you don’t get to choose those moments. It’s just not up to you, nor is it up to the Alzheimer’s patient. It just is what it is. You have to treasure the moments of clarity, and deal with the fog, because the patient has no control of it. Believe me, if they could control it, they would. No one wants to lose their memory. Everyone treasures those memories, and when they start to fade, it is sad for them…at least until they just don’t remember them anymore. At some point, it becomes more sad for the visitors than it is for the patient, because they no longer remember that they forgot.
I am so glad that my Uncle Bill and cousin Carol had such a nice visit, and that my Uncle Bill was having a great moment of clarity, because the visit meant so much to both of them. Carol suffers from Dementia as well, and while neither probably remembers the visit now, the rest of us could tell that it was a very special moment. Sometimes, without even realizing it, kids can do something so special for their parents that, whether the parents remembers it forever or not, makes no difference, because the other people who witness it or see pictures of it, can see just what an amazing moment it really was. This was one of those amazing moments that will live in my memory files forever. I think Carol’s kids are all pretty amazing. They love Carol, and see to her needs in such wonderful ways. I love each and every one of them.
My nephew, Rob is a multi-faceted person. As a little boy, he had either a keen sense of direction or he was very observant. Whenever he went somewhere with someone, if they went a direction that was other than the normally taken route, little Robbie would quickly explain to the driver, that this was not the right way to go. The offending driver then had to try to explain to Robbie that they were taking an alternate route. I’m not completely certain that Robbie was ever really convinced that they knew what they were talking about. I think he probably thought they just wandered around until they found their way, and while they always seemed to manage to find their way, they nevertheless, had done it wrong. I think it was mostly because Robbie was a very observant child.
He has always looked up to his grandpa, my dad, Allen Lewis Spencer. If his grandpa did something, he wanted to do that thing too, and he wanted to do it just like his grandpa. I suppose that was the reason he was able to walk into a campground spot the family had rented for the night and take care of a little problem that the family was having. His brothers-in-law were trying to get the campfire started, and no matter what they did, the fire fizzled. Robbie, however, had been watching his grandpa build a campfire for years, and now, he knew exactly what needed to be done. Robbie didn’t say a word, but just walked up to the campfire ring, moved the kindling around a little and lit the fire, then he used a hat, just like his grandpa had always done, to fan the kindling until it grew into a nice little fire. Then, without bragging or even saying anything at all, he simply went on about his own activities. I’m sure his brothers-in-law were both amazed that he got it going so easily and thankful that he didn’t rub it in. Like his grandpa, he just did what needed to be done and didn’t make the other guys feel like they didn’t know anything about it.
As a dad, himself now, a grown up Rob knows what it means to be kind and patient with his kids, and it has created a great bond between him and them. They think the world of their daddy. He reminds me of my dad in that way too. If he continues to follow the teachings of his grandpa, he will become the problem solver his grandpa always was. He could become the go to person his grandpa always was, and that would be a great goal for anyone to aspire to accomplish. I can’t think that Rob would like anything more than to become more and more like his grandpa. Since my dad’s passing, Rob has taken over many of the chores that had belonged to Dad. Everything from taking out the trash, to shoveling the walk, mowing the lawn, ad even checking in on Mom to make sure she is doing well, and has all that she wants or needs. He loves his mom and grandma, and considers it a privilege more than a duty to take care of them.Today is Rob’s birthday. Happy birthday Rob!! You get better and better with each passing year. Have a great day!! We love you!!
Many people think that the elderly have nothing left to give to this world. They are pretty much done, and maybe even waiting to die, right? I couldn’t disagree more. I have been a caregiver since 2005, and while there have been challenges and sadness, the overall experience has been very rewarding. While there have been times when they are irritable, or even downright grouchy, I have found that if you will just walk a mile in their shoes, you will walk away with a new understanding of what they are going through and why they might have mood swings.
I have also found that if you take the time to listen to things they have to say, you can learn a lot about their lives while you are caring for them. These people have live in times that we have no idea about, and listening can teach you a lot about the past…a past that is your heritage. So many of my stories have come from just such talks about days gone by, and I will be forever grateful for having been given the opportunity to hear about it. All too soon, these people could be gone, and with them go all the stories they have stored in their heads. If you have that opportunity, I strongly recommend you have a talk with your parents or other aging loved one so that you can see what it would have been like to walk in their shoes.
Last night and this morning, I found out what it really is like to walk a mile in their shoes, when I experienced a headache that just would not go away, and would not allow me to even think much. My neck was out of place, and after my Chiropractic appointment, I felt much better. Still, it was an eye opener for me, because the one thing a caregiver can’t do, is feel the pain of their patient. For days now, I have been and probably will continue to try to minimize the back pain my mother-in-law feels in an effort to get her to continue to walk. She experiences pain in the low back and would love to get out of walking, which is something I can’t allow, hence the need to minimise. I doubt if she will believe me when I say the it is not so bad, but with Alzheimer’s disease, she will also not remember it later….a very good thing. Nevertheless, I will do whatever I can to minimize it, because after the horrible headache I had last night, I can honestly say that I have walked a mile, or maybe two, in their shoes.
As a caregiver, I can understand fully just how easy it can be to hit the breaking point. Sometimes it comes with irritation, or worse, screaming at the person you are trying to help, but just as often, it comes in the form of an argument with someone else…one that has nothing to do with the things that are bothering the caregiver at all. Usually the breaking point happens over something that is so trivial that you wonder what your problem is. And sadly, so does everyone else. Basically it’s the straw that broke the camel’s back. It’s just that last thing to happen in a series of events that have been adding stress upon stress, to the point that you just have no more patience.
Caregivers tend to hold it all in for as long as they can in an effort to keep on keeping on. There is no way out of the situation…you are needed, and you would not leave your loved one without the help they need. You love them. So you simply pull yourself up by the bootstraps, take a deep breath, muster up every bit of adrenalin that you can, and you go on. It’s all you can do. Then, without warning, something hits that last straw point…that breaking point…and you find yourself losing that control you have worked so hard to maintain. It’s like watching yourself explode. You would stop it if you could, but it is beyond that point now. Your mouth is engaged, and your mind has already quit thinking rationally. It is probably the darkest, most horrible, single act that a caregiver can perform, and one that none of us want to do. We already know that we will have to apologize for acting in such a way…after all, it wasn’t the fault of the patient or whomever it was that we have just unloaded all those pent up feelings on. They were simply the last straw.
Not only do they not know what they did wrong, but they find themselves wondering why they never knew that you were insane before. You aren’t, of course, but you are overworked, and you are tired, and you are emotionally drained. The person you have always known to be strong and capable, has suddenly changed into a weak and needy person, and that has turned your life upside down. It is enough to make anyone go seemingly insane. You had always thought that your parents would always be your parents, and they are of course, but they are also your patient, and your responsibility. The tables have turned, and in the process, your life has hit a turning point too, and you don’t know what to do to fix it.
There really is no way to fix it. You find yourself in a position of having to accept that your parents will never be the strong people they were. That part of their life has passed, and the future…the winding down of their lives has been set in motion. Even if it was just a day ago that they felt fine, there is no going back that one day. Time marches on and we have to go with it. We have to learn to make the best of what we have now, and take care of ourselves well enough that perhaps we can avoid that next breaking point…because if we can’t, we will once again find ourselves looking at someone who has no idea what they have done to us. All they know is that the person they love is somehow furious at them, and it breaks their heart…at which point, we lose all that anger, wish we had not let things get out of control, and begin the process of repairing the relationship again with that all too familiar apology.