Being a Caretaker During the Holidays

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It’s been awhile since I’ve last posted, probably because of my schedule due to lack of free time and a bit of procrastination all wrapped up into one. Losing my mother to dementia, Alzheimer’s disease is something that I am finding that you never really get over, never really get past. After years of caretaking a parent, it’s always lingering in the background whether you are speaking out loud about it or not. You carry on with your life, moving forward, but there is always that one thing that is hanging around in your head regardless if you are conscious of it or not. Whether you are a caretaker of a parent with Alzheimer’s or just dealing with a parent living in a nursing home suffering with the disease, the end result is always the same. Alzheimer’s disease takes no prisoners, no hostages…it wants the whole enchilada, and it always wins, with the people left behind feeling an unexpected void.

It’s been a little over 2 years since my mother got her wings, with this past Christmas and New Year being the 3rd. You’d think I would have gotten used to it by now, but I’m not and I seriously doubt that people ever get over it. Caretakers and those left behind deal with the road never traveled. Every day is a new day, and every memory is a welcomed one. I grew up in a broken home and we had no real holiday traditions to speak of, but while she lived in my house when care taking her, she got great pleasure in helping me decorate the Christmas tree. Because of her disease, decorating made her childlike and filled with joy. Because of that brief connection during the holidays, I relive it every year when decorating the tree. I’m happy that it doesn’t depress me, but instead it adds to the joy of the season and has become a good memory. For some people the holidays become a very depressing time because they can’t accept the void that they are left with after their loved ones passes. I am finding that trying to hang onto the good memories is the way to go… and also for your own well-being able in moving forward.

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Photos: Top: Mom, (left) with big sister Lillian in 1942, left: Mom & me years ago, below: Mom (middle) with our neighbors and friends Eleonore & Gene on her second to last Christmas Eve.

Being a caretaker is probably one of the hardest things that I have ever taken on. I used to think that parenting was the hardest job in the world, but for me, care taking proved to be the most difficult. You are literally changing roles with your parent…the same parent who you looked to for guidance and support during your whole life, is now your child. Now you’re in the position where they are’t capable of making the simplest of decisions, caring for themselves, paying bills, driving, etc. They become the child and you become their parent, which can be totally humiliating for them and overwhelming for you, especially since they do know that their brain is failing. They are very much aware that something is happening to them but they are hard pressed to  understand why it is happening or how it is happening which creates a major dilemma for them. Some families adjust better than others, yet some can have years of turbulence in the house since it is the nature of the disease to create chaos in families. Having gone through both sides of this scenario, I can understand how each side feels, and I know it’s not easy.

Gene-Lynn-Mom-Eleonore

While in the middle of the situation, we have no idea how we will react once our loved one has passed because in reality, we are in the middle of a war with no end in sight. We did the best we could while going through it, sometimes acing it and other times bombing at our caretaker role, but I now know that it is perfectly normal. What I didn’t expect however, was how I would feel and react after being a caretaker, after the curtain came down. I now know that afterwards, it’s a completely new journey and none of us can anticipate what that journey will be because it will be different for each person. I’m well over 2 years into my journey and I am still not exactly sure what I am doing or how I feel or even how I should proceed. Basically, it tends to be a one day at a time thing and you do a lot of winging it.

Happy New Year!

For me holidays are mostly melancholy with this one being no different. So with this New Year, 2017, I am hoping that I continue to progress on my path moving forward and continue to have good memories during the holidays. I wish all the caretakers dealing with this horrendous disease, strengthpatience and peace for the upcoming new year as it will more than likely be a challenging one in many ways.

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My Demented Mother has Turned into a 2 Year Old

mom_beach3  mom_beach2  mom_beach1

It’s summer time, I’m home recouperating from a recent surgery in the hospital which is giving me a lot of time for reflection. The photos above have always been favorites of mine, I guess because it shows Mom as a young blonde haired girl with a world of possibilities ahead of her. To look at these images, there are no signs of OCD, no signs of depression and no signs that there was a troubled life waiting for her in adulthood. My guess is, that these photos were taken at Coney Island Beach.

Since I’ve been home during work hours, I’ve noticed that Mom has really been declining. She has good days and bad days and you never know what you will get. It could be good one minute and 5 minutes later it could turn. For instance, this morning, Cardine was trying to give her medication and she would push them out of her mouth with her tongue. What is that…it’s 2 year old behavior. When we kept telling her to take the medication she stands up and tells Cardine that she will smash her face. I’m having a really hard time understanding this behavior from an otherwise very sweet woman. Cardine handles it very well as she is trained to do so. I, on the other hand have a very hard time watching my mother behave like this.

In the past 2 weeks, she’s not been eating well. She plays with her food and then eventually just pushes it away. When you try to feed her, she won’t take it. I called the doctor to ask for advice on what to do. They took 3 days to call back and I still don’t have any good answer as to what to do. I actually hung up a little annoyed after to talking to the nurse practitioner, not the doctor. Meanwhile, we’ve been giving her Ensure when she will take it, offering her meals and happy with what she does eat. Let’s see where this goes.

So, I know that dementia is a one way road…there is no cure. I know we are closer to the void and I am not sure where we go from there. My demented mother is sinking deeper into her disease as every day passes and there is nothing that I can do to stop it. Even knowing all of that, my mind still can’t help thinking about what more I can be doing to make it better. I bless Cardine’s patience everyday of the week!

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