Even though I’ve stopped updating this blog, people keep finding it and asking for updates.
Since Gramps, at 97-years old, is now in an assisted-living facility, I don’t have daily interaction with him, and hence, no stories.
However, I realize that the story doesn’t stop here. As my friends’ parents and grandparents age, more and more are being affected by Alzheimer’s.
So today I decided to share what I have learned on this journey. I have noted which Stage of Alzheimer’s I believe my grandfather was at for each of these lessons to help readers anticipate what they are going to encounter.
You can see all the stages here. My mother and I consulted a family counselor, who specializes in helping care takers, along the way, and I must say, her wisdom and advice was priceless and instrumental in allowing us to provide the appropriate care at each stage and keep our sanity in the process.
1) Pick Your Battles
As an Alzheimer’s patient loses their cognition, they are going to do things that we think are “crazy.” (Stage 3) Hence, how my blog started. They can be funny, like when Gramps put my dog’s food in the freezer and my mother couldn’t find it. They can be annoying, like when Gramps would put up a fight when we would take him to his day care program. We knew it was the right thing for him, but he wasn’t in a position to understand our rationale for it. They can be frustrating, like when Gramps would hide our business mail in his desk drawer. But as a caretaker, you are going to exhaust yourself trying to fix everything that the patient does incorrectly. How many times can you take the cereal out of the refrigerator before acknowledging that the patient is going to keep putting it there? And does cold cereal really matter?
Getting angry at the patient, or trying to show them the correct action is going to be fruitless. It is not like a child, who, as they grow and are disciplined enough will hopefully learn their lesson. An Alzheimer’s patient doesn’t have the cognition to determine right from wrong.
In the scheme of things, does it really matter that I found Gramps having a beer with breakfast on more than one occasion? That he would hide our office mail in a drawer? That he would empty the recycling bin at work when it had just one piece of paper in it? No, it doesn’t.
The most important thing is the Gramps wasn’t doing anything to harm himself or anyone else, and that we kept him safe, which leads me to my second lesson.
2) How Should I Care for My Loved One?
This is probably the biggest decision a family needs to make, and the most difficult.
Since my grandfather’s downhill slide began when he was hospitalized for a minor fall, which left him a little bruised and unsteady on his feet, I was adamant that he be moved as little as possible, and kept in familiar surroundings. Our counselor seconded this opinion, and advised us that we should keep my grandfather at home as long as he recognized he was in fact home. This was probably the best advice I received during this journey. Thankfully, because my grandfather had built a successful business, we had the financial resources to care for him as we saw fit, without financial limitations.
Initially this involved my mother moving in with him to watch after him at night, while I took him to the office with me during the day.
Eventually, this became too much for my mother, his primary caretaker, as she wasn’t able to get a good night’s sleep. At that point, we hired a nighttime caretaker, who stayed with my grandfather from 11 p.m. – 7 a.m. He made sure my grandfather had someone to help him in the middle of the night should, and was there to bathe and dress my grandfather in the morning.
My grandfather would be alone for a couple hours in between the time his caretaker left and I picked him up in the morning to go to work.
One day I found my grandfather wandering around outside as he had locked himself out of the house. Luckily, he was unharmed, but it was at this point that we decided he needed 24 hour care.
Again, since my grandfather was aware of his surroundings most of the time and knew where his home was, we decided it was best to keep him at home in familiar surroundings. Again, we were blessed to have the financial resources to do this.
Eventually, as my grandfather lost all recognition of any place, person or thing, we put him in an assisted-living facility that specializes in caring for Alzheimer’s patients. We decided it wasn’t worth the cost of having private around the clock care to keep him at home, when he didn’t even recognize he was home. The assisted living facility is about a third of the cost of keeping him at home. I believe this was the best plan of action for our family, my grandfather and our financial resources.
3) The Care Taker Needs More Care Than the Patient
An Alzheimer’s patient progresses, they become less and less aware that they have the disease. Someone in the first three stages may acknowledge that they are getting forgetful, but as they progress, they don’t have the cognition to understand their brains aren’t working at full capacity. Also, the one good thing about Alzheimer’s is that the patient doesn’t experience any pain. As long as their basic needs are met, the patients are going to be indifferent to their situation because they don’t know any better.
So the hard part of the disease falls on the caretaker.
The caretaker has to suddenly fit someone else’s needs into their life. If a family member is the primary caretaker, they need to adjust their lives. This may mean not getting as much sleep as they once did, not being able to be as social as they may like, not being able to travel as much. This alone is a huge change to one’s lifestyle.
Secondly, the emotional burden of having to make decisions that severely affect another person’s life is difficult. All of a sudden, my family, who was so accustomed to being cared for by my grandfather, physically, emotionally and financially, found the roles reversed. Not to mention, as in most families, there are differing points of view on how my grandfather should be best cared for. Ultimately, however, the decision falls to one person.
If you are the primary caregiver to an Alzheimer’s patient, remember to take time to yourself and ask for help when you need it. Try to be aware that you are reaching your limit before you reach it because stress and anxiety isn’t good for you or the Alzheimer’s patient. And most importantly, know when you can no longer safely care for the patient and at that point, move on to the next level of care such as a live-in care taker or an assisted-living facility.
It is difficult for me to see my grandfather as he is now: confined to a wheel chair, unable to perform everyday tasks, such as dressing and eating on his own, and perhaps the hardest, not able to recognize his friends and family. But I remind myself that he is comfortable, not in any pain, and unaware of his current state. Sometimes I wonder why God has not taken him home yet, but most days I see him, I’m thankful, even though he doesn’t know who I am and he isn’t the man I once knew, he is there physically for me to visit and admire.
Recently, as I was clearing out his home preparing to rent it out, I came across some photos of him in his heyday. Leaning back comfortably in a chair at a dinner party with friends, smiling at the camera, he seemed to be saying, “I made this life. I’m successful, I have many friends, I’m happy, and I’m going to enjoy this life to the fullest.” It made me, even more than before, want to emulate his success and character. And seeing him, even in his current state, is a reminder to not let him down.
