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.

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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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Dementia and Another Reflective Easter Sunday

Eleanor-Van MeterEaster Sunday and reflecting as we head into spring…I took care of my mother with dementia as her mother took care of her father with the same disease. It was the hardest thing that I’ve ever done. She died 2 years ago and not a day passes that I am not grateful to have taken care of her. It took 8 years of my life but I’m not sorry. Through the earlier years, we didn’t always have a great relationship, but in those 8 years while I was taking care of her, we were able to make our peace. I learned things about her that I had never known before which is a direct statement to who I am today.

I have often wondered why people with dementia are always looking and searching for their mother. It seems to be a common theme in the dementiaAlzheimer’s world. My mother was no different in that searching for her mother was a way of life around here. Well, since my mother died, I think of her everyday. It’s not an understandable train of thought until the day comes where we find ourselves parent-less. I’ve come to believe that we all face this common feeling once we lose our mother, or dominant parent. By dominant I mean, the parent who mostly raised you, right there in the trenches with you.

I belong to a generation of baby-boomers who find ourselves approaching old age, in the last third stretch of time in our lives. With that, we are facing the largest dementiaAlzheimer’s related population in history. Much has been written on the subject with little solution added to the conversation. My mother’s generation, and the generation before her, luckily came from roots where you take care of your family, and that meant in old age as well. My grandmother took care of her mother, her mother-in-law and even sister-in-law when they could no longer care for themselves and my mother was lucky enough to have me. But not all people of my generation are able to take care of sick and aging parents. In today’s world, we all have to work and earn a living. Even in a 2 person household, more than likely, both people will need to work in order to have a house and food on the table for their family. The past 2 generations had a very different life than people of today, not always, but usually it was the man who went to work and the woman would stay home to tend to the house and kids. It was a less complicated life than we face today and I am guessing that this is only the tip of the iceberg. We live in a very complicated, busy and turbulent world. Our children and grand children’s lives will be more complicated and busy that ours, which seems like a scary thought to me.

Eleanor Van MeterWith all of that said, where does that leave the aging and sick baby-boomers who are coming of age everyday? A lot of us don’t have retirement savings because we are the transitional generation on the cusp of pension and a do-it-yourself retirement savings. And if you were lucky enough not to work while your kids were growing up, you are really finding yourself in a bad position right about now. Take it one step further, if you are a divorced woman, chances are that you have absolutely zero retirement savings because you need your paycheck to live. So what if you start developing this dreaded disease of dementia or Alzheimers? Your busy kids will probably not want or be able to take responsibility with their busy lives. Being a caretaker for people afflicted with this disease is a full time job and as we know, most of us must have a full time job to survive just to have a basic life. Do we all go into nursing homes, god forbid? Do we end up on social services? It’s a modern day dilemma plaguing the baby-boomer generation and their children.

Photos: Above (1): Eleanor Van Meter with her husband Dwight to the left and a friend of theirs to the right. This was the happiest time of her life. (2) Mom (Eleanor) at Rockefeller Center, where she worked posing for a photo. On the back of this photo she noted that she has no idea who the man is! Below (3): Lynn on Easter Sunday in Hicksville at 6 years old (that old car is scary).

me111004All of these heavy thoughts on this Easter Sunday. Again, thinking of my own mother today since she got her wings two years ago. I can remember when I was a kid…Easter morning was usually at my maternal grandparents house. After church, it was the usual Easter basket with all the traditional Easter candy. Finding all the colored Easter eggs that were hidden around the house. They would always make me get dressed up in a Easter outfit with a hat, white ankle socks and patent leather shoes, a tomboy’s worst nightmare. Sometimes, my father would come to visit, bring goodies and we all would sit at the table eating a nice holiday dinner that my grandmother would cook for us. After dinner, all the adults would sit in the kitchen and talk for hours, usually politics and I would sneak down the hallway to watch them, even though I wasn’t the slightest bit interested. It was fun to watch them though.

There were a lot of good memories from back then, but I find this Easter to be a very reflective day. I’m guessing that this part of our lives is meant to be a reflective time and even more so, at my mother’s age when she was so seriously looking for her own mother as if to be on a mission when her memory failed her. It’s almost as if we go into a default mode when the brain starts malfunctioning. We are always searching for the good old days and the people who were in them.

 

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Does Food Taste Good To Dementia Patients?

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Alzheimer patients often have different preferences for foods that they might of had before the disease came on. Their tastes can change slowly or abruptly as the disease progresses, but either way, it is disturbing to the caretaker. That is the case with my mother and it put me into a tailspin, worrying that she wasn’t getting the proper nutrition.

Now when you think about it, that’s a crazy thought because they are still adults, right? They really are not 5 year old children who haven’t tasted certain foods. They’ve had a lifetime of eating and tasting creating their preferences for certain foods and a dislike for others. It’s their right not to eat what they don’t have a taste for…they don’t like it…it doesn’t taste good to them. We are all different…right? Food should taste good, right?

cookie monsterWell, it turns out that Alzheimer patients taste buds change as they progress into the disease. What they liked yesterday is not necessarily what they will like today or tomorrow or the next day…their tastes change. With that, it stresses out the caregiver because we are there to do the right thing for our parents. After all, we are THEIR parents now and they must listen to us because we know better…. Heck, we love to eat broccoli and spaghetti with sauce with parmesan cheese on top and my Mom used to like it too…so why doesn’t she like it now?  Why is she not eating her cookies anymore, raiding the cookie jar every time I turn my head? I once called her the cookie monster. I also used to give her medication with pudding or yogurt and the other day she spit it out…at me…. with a sour puss on her face. I insisted that it tastes fine…and that she’s been taking her pills like that for a long time with no problem…so why now is she acting so vile? Because their tastes change as they progress into the disease…finally, I got it!

Last week, I found Teepa Snow who teaches and lectures on the behaviors of Alzheimer’s patients. She educates caregivers, while explaining how the Alzheimer’s afflicted person is experiencing their disease. I found her lectures amazingly informative, feeling that any caregiver would benefit from viewing her videos. She has a website and her other videos are also found on: https://www.youtube.com/. The first video that I listened to, I posted on the Boomerang-parent’s Facebook page. Here is the link to Teepa’s video that I first listened to that finally made sense to me: http://www.alzheimersweekly.com/2014/05/sweet-food-bitter-pills-dementia.html

applesauce  pudding

Teepa says that their taste of sour and bitter becomes stronger than before…therefore they start putting more sugar in coffee, eat more sweets, etc. She gives all sorts of scenarios that all caretakers face with dementia patients. She suggests that crushing their pills in apple sauce is the worst thing you could do because it makes the already bitter pills, more bitter in the apple sauce. She says that jam would be the better choice to get them to take their meds. Also, did you know that putting crushed meds in pudding or yogurt really doesn’t work either…not really…because of the smooth texture. Makes them want to spit it out because they feel the crushed pills in their mouth…which my mother actually did. Why didn’t I think of that…..? There is so much more in this video, including humor…a lot of light-hearted humor…definitely worth the watch.

It all became so clear and understandable…of course….why didn’t I see that before? Probably because I was in the middle of the situation with blinders on. It makes so much sense…and I felt relieved having seen it. Finally something that explains what is happening before my very eyes. I may not like it, but it’s the facts Ma’me. Teepa gives very good suggestions on how to get around the altered taste buds and as glad I am to know that now…I wish that I could have seen her video last summer in 2014 where I could have applied it to my Mother’s symptoms. I could have made her life so much easier if I knew these simple facts, and would have saved myself a heap of worrying. Hopefully, I can help to pass this info on to others.

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