Tag Archives: caretakers

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.

Eleanor VanMeter_Lynn Brophy

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, strength, patience and peace for the upcoming new year as it will more than likely be a challenging one in many ways.

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A Sad Reality at the Supermarket Last Weekend

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Mom_silhouetteThis past weekend, I made a Sunday run to the local supermarket for a few last minute items before my work week began the following day. Nothing unusual, cheese for my salads, artisan bread for the slow cooker dinner I was making, etc. Matter of fact, I was annoyed with myself that I didn’t remember to pick these things up on Saturday when I normally do my food shopping. No matter, I get to the supermarket, park the car, go in and gather everything that I need, then scan the front of the store to see what register had the shortest line so that I could make a quick retreat.

I spotted the last register with only one older man who appeared to be checked out, so I got onto this line. I figured, wow, this will be fast, I got lucky today. So, with that, I put all my groceries onto the belt but nothing is happening, nobody is moving. The cashier is just standing there staring off into space as if she were bored stiff and the older man was struggling with his 10 plus bags on the end of the belt. I’m thinking…. what’s happening here, why is the cashier just standing there looking absolutely useless? I thought maybe there was a problem because literally, nobody was doing much of anything. After standing there for a few minutes and evaluating the situation, I realized that this poor man was standing at the counter, wearing red plaid flannel pajama bottoms, a winter coat, looking very pale and appeared to be winded. He tried to lift one of the bags and appeared to not have the physical strength to lift or put them in the cart. I look at the cashier and she’s just standing there uninterested and not in any way prepared to help him. He looked up at me and said I’m so sorry. By then, I understood exactly what was happening.

helping-handsAt that point, I stepped up and said, here, let me help you. He appeared relieved and moved over as I took charge. I noticed that the cashier had put everything in single plastic bags. Some of the items were heavy with pointed edges and there was no way he would be able to get them safely to his car without them ripping open spilling onto the ground. I looked at the obviously unconcerned cashier and told her with a stern voice to start double bagging all of his bags while I load them into his cart. She looked shocked that I would actually have the gall to instruct her to help but finally began moving at a snail’s pace, but it was very obvious that if I hadn’t stepped in, she was going to continue doing nothing. I finally got his bags into the cart, and I asked him, are you here by yourself? Do you want me to help you load these bags into your car? He said no…no, that’s okay, I’ll manage. Not wanting to further force myself onto him, I said okay and he thanked me for helping him. As he walks away, I see that he is walking very slowly and in my heart of hearts, I knew that he was struggling. But again, I didn’t want to push myself on him, so I stayed put.

Photos: Top: (1) silhouette of mom, Eleanor Van Meter, (2) Public domain image, (3) Mom at 86 years old, weeks before she passed.

Meanwhile, I get myself checked out feeling really disgusted with this cashier, wondering if I should see the manager about it, but decided to let it go…for now. Got to my car and put my bags into the back when I realized that I had forgotten a few things…so I locked the car and went back into the store. Upon checking out for the second time and getting back to my car, I was still thinking about the man. Surely, he didn’t load all of those bags into his car himself, but I didn’t see him in the parking lot. Perhaps someone helped him? After quickly scanning the lot, I didn’t see him, so I got into my car and started to leave the parking lot. When I approached the last aisle before exiting the lot, there he was in the closest parking space still trying to load his car. I had been in and out of this store twice and he was still not even halfway finished loading the bags into the back of his car.

Well, you know by now, that I had to stop my car, I wouldn’t sleep that night if I kept going…so I double parked…got out and again said, here, let me help you. I softly said to him, that he should think about coming to the supermarket with someone to help him and that it’s dangerous for him to come alone. He replied, I know, my wife usually comes with me but she is at home cooking right now. She wanted to come this time but I told her no. He volunteered the information that he had a triple bypass 3 months earlier and that he gets extremely tired when doing anything physical. It made total sense now. He then said, I can’t just sit like a vegetable and feel useless…I have to do something. It was then that I saw something in his eye, he was afraid of losing his independence, something that no older person should ever have to go through. It’s a matter of dignity. I finished loading his bags into the car, and he was repeatedly grateful for the help. He said God Bless you and Happy Holidays. I had hoped that he could get back to his place safely and rest himself.

A last minute errand for myself had turned into something that left me feeling both sad and happy. Sad because of his situation and in his realization that he’s not the man that he used to be and has become a man that is in line for losing his independence…and happy because I was there to help him. It was the first time since my mother passed away that I felt like I did something meaningful for someone else.

Now, what to do about this cashier? Should I let it go, should I speak with her manager or should I just say something directly to her next time I see her? What would you do? Seems to me that when I was a kid and working as a cashier in a supermarket, we were required to not only bag all of the items and put them in their little grocery cart, but also actually make change. These kids today are absolutely clueless about making change without the computer telling them what to do and what change to give the customer. What’s wrong with our world that a 16 or 17 year old girl couldn’t feel the compassion to move her behind to help this man?  I really don’t get it…do you? Is that where our world is going?

Eleanor Van MeterNow that the baby boomers are retiring and aging in astonishing numbers, we are going to see more and more of this lack of concern from a portion of our youth. Alzheimer’s disease, dementia and other diseases are plaguing our elderly, leaving their children and family members to be their caretakers. My mother was lucky, she had me, but what about the ones who have nobody to take care of them? What about the ones who are struggling by themselves? What’s going to happen to them if something as simple as helping them load bags of groceries into a cart is too much trouble? Will there be a helping hand reaching out to them if needed? I know for a fact that there are many young people that would have stood up to the plate in a situation like this but sadly there are just as many who wouldn’t have. It was a discouraging thing to see but it’s the reality of today’s world.

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Mom’s Supplies Go on to Help Others with Dementia and Alzheimer’s

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After bouncing off of a great weekend, I’m still basking in the rays of the good feeling in knowing that I was able to help a few people. I didn’t realize that there were so many people out there that need a helping hand while taking care of a parent with Alzheimer’s and dementia. This weekend was very enlightening for me seeing Mom’s unused supplies go on to help others with dementia and Alzheimer’s.

While I was care taking my mother, also with dementia and Alzheimer’s, we found the need to use the adult pull-ups for her. It wasn’t easy at first to get her to agree to use them, but after awhile, she accepted them and put up no fuss, except of course, the effort it took to put them on. During the years, we seemed to get monthly deliveries, which filled my basement with cartons of pull-ups, leaving little room to walk around. Of course she didn’t use them all, as no person in the world could have used the quantity that was delivered to her. When she passed away last September, my basement housed 28 cartons of adult pull-ups containing 4 packages of 20 totaling 80 pull-ups per carton. Now, that’s a lot of pull-ups.

pullups3 From the get go, my intention was to bring the supplies to the local nursing homes to help some other elderly people. Apparently, after calling around to the homes, I learned that they are restricted and must buy from whichever source they normally order their supplies from and are not allowed to accept donations of that manner. Someone suggested that I call the local thrift stores, but I didn’t want anyone to make money from them…I wanted them to help other people like my mother, as a donation…free.

Finally, this past weekend, I decided to post them on Craigslist for Free. To my amazement, my phone started ringing immediately after posting. My phone didn’t stop ringing all day. I was stunned at how many people are in the very situation that I was in with my mother. They all seemed to have the same urgency in their voice. I knew that I couldn’t help everyone, so out of fairness, I took the first 2 callers, who had their own story to tell.

Photos: above, (1) Mom, during the first week of home hospice, still smiling. right, (2) the infamous pull-ups, below, (3) Mom in bathing suit looking pretty snazzy…happy as a lark.

The first caller, Ed, a truck driver told me that he just recently remarried and that his mother had moved in with them because she had Alzheimer’s. His new wife was care taking his mother, which in itself I thought was incredible, but also a huge stress on the new marriage. He told me that he was having the same toileting  issues that all of us caretakers have when taking care of anyone with Alzheimer’s or dementia. Incontinence is not a pretty or pleasant sight and it’s definitely intolerable when finding yourself in the middle of this situation with an elderly parent. Plus buying the adult pull-ups on a regular basis isn’t affordable for everyone either, so it’s a tough situation all around. Ed was so grateful to get half of my offerings which would hold him over for quite sometime, that he gave me a huge hug…he had no words.

The second caller Steve, lives about 40 minutes from my location, originally from Boston, as I could hear in his accent. He also sounded desperate to be able to benefit from the free pull-ups. His mother with Alzheimer’s also needed the pull-ups, who broke her hip and was getting out of rehab the next day. She lives with his sister, who is the caretaker for her. They live in Boston, so he would drive the cartons up to Boston right away for her to use. He was an older man on a fixed budget, who was trying to help his mother and sister in any way that he could. Steve told me how much he appreciated getting the cartons and that he would be going to deliver them to Boston the next day.

For the rest of the day, I spoke with many other people who all had the same urgency in their voice, all caretakers to a family member, all needing the help, all having their own stories and struggles. I was truly amazed and touched at how many caretakers there really are out there, all having the same issues when dealing with this disease. When care taking a parent at home, the people who aren’t lucky enough to get their parent onto a state program to help with aides and supplies, suffer the most. They have no break, no relief and many times must quit their jobs in order to care for the parent. I truly believe that there should be an outlet for some sort of help, physical and monetary, while they are able to go to work to support the household. What will become of the caretakers who don’t have a spouse or family member to help out? What happens if they must stay home without employment? It’s huge problem in this country, and it needs to be addressed. The baby boomers aren’t getting any younger and as we all age, there will be more cases of Alzheimer’s and dementia than ever before.

mom-carSomething to think about…but for today, I will bask in the wonderful feeling that I was left with in helping Ed and Steve with their struggles. Mom would be happy about helping others like herself.

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Can Pet Therapy Be An Asset In Dementia Care?

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Tonya_window  Mom

Should caregivers consider having a pet in the house for their loved one suffering from Alzheimer’s or dementia? I would guess that many factors figure into the answer to that question, such as does the caregiver like animals, does the patient like animals, can their house accommodate a pet, will they have enough time to devote to the pet? So many things to consider when making this decision because taking on a pet is basically bringing in another family member. They will need to be fed, cleaned, possibly walked. They will need shots and vet care periodically and of course lots of attention. It’s a big decision for anyone and compounded with dementia care.

In the case of my mother, Eleanor, she was never a huge animal lover, although she had a daughter, myself, who absolutely loved animals. I’ve wanted a dog since the first time I had ever laid eyes on one. It wasn’t to be as I was growing up but I was able to have parakeets and turtles…things that could be in a cage. Needless to say, when I left home, the first thing that I did was get a dog, first a Great Dane named Hannibal, a year later a 3 lb. Chihuahua named Tinker-belle aka Stinky…and then later, another Great Dane named Kwincy. You can read about Hannibal, Kwincy and Stinky here: http://lynnwho.hubpages.com/hub/chihuahua-toy-dogs

stinky Hannibal 1It was probably the happiest time of my life as I remember it. Of course the kids had lots of other animals over the years, but our house always had a dog. As the years went on, they of course passed away…when the last one, the Chihuahua named Stinky finally passed, I was so crushed that the family talked me into taking on 2 new Chihuahua puppies, Daisy and Peanut. Not sure I was ready to start over, but I did it anyway and it turned out to be a very wise decision. They were with me for many years, through thick and thin, with one still alive by the time my mother finally came to live with me.

When Mom came, she was already in the throws of dementia, although I didn’t realize it right away. After awhile however, it was very apparent, although she was at the beginning of the disease and was able to stay at home during the day when I went to work. She was not a danger to herself at that point. She functioned well, although was recuperating from a broken hip and was a little paranoid and forgetful. When I left for work, I was usually gone from the house for 12 hour stretches, having 2 hours of commuting time. It was a long day for Mom and for myself. Daisy was there with her during the day and they formed a close bond. Daisy was very respectful about not invading her space, which was a relief. They were 2 old girls being respectful of each other and coming to depend on each other at the same time. My mother enjoyed her company and didn’t feel alone in the house, and Daisy looked forward to the little treats that Mom would give her during the day…and also being let out back at mid-day. It was a really perfect situation, in that they helped to solve issues on both sides.

Hanni_kwincy Photos: Top: (1) Tonya laying in the sun on her chair in the window, (2) Mom looking happy and healthy, (3) Hannibal looking very regal, (4) Stinky the Chihuahua at 14 years old, Right: (5) Hannibal and Kwincy lounging outside, (6) Mom and Tonya

Finally, Daisy passed away at home, at 14 years old. My mother didn’t realize it since she was in bed, still sleeping when I woke up that morning. Of course, I had to tell her…and she was crushed. She made a sound that I will never forget, a sound of complete hurt and loss. She started to cry and was sad for a long time afterwards. I framed a nice big picture of Daisy and put it in her room to remember her by. It helped to keep Daisy alive in her mind. About a year, maybe a year and a half later, I bought a few parakeets to bring some sound and life into the house…and that it did. Parakeets are very noisy little birds and fascinating to watch. I kept them in the kitchen, which is where my mother loved to hang out during the day. I can remember that she would spend hours in front of the cage just whistling at them trying to get them to chirp back, which they would accommodate. I could tell that their presence changed Mom’s behavior, in that she perked up from the void that Daisy had left in the house.

About two years after that, I ran into a rescue truck at the local pet store and fell in love with a terrier mix that American Airlines had flown in from California. Her name was Tonya and before I knew it, I had brought home a little girl who needed rescuing. I wasn’t sure at all how this would work out because Tonya wasn’t used to us yet and if the door was opened, she would dart out running as fast as a Greyhound. That in itself made me a little nervous, but in the long run, it all worked out. After while, Tonya became very close with Mom since they were home together all day long. Just as with Daisy, Mom would give her little treats during the day and they would become inseparable. It wasn’t too long after that when Mom started to decline in her dementia, needing a home health aide. Once Cardine, her aide came aboard, Tonya got attached to her also, but would forever be Mom’s protector with anyone new who came into the house.

Mom_Tonya1Tonya knew when Mom was declining and protected her even more so, laying by her bed all day, sleeping under her bed. After about a year, when hospice came in, Tonya knew exactly what was happening at the moment of her death. Dogs are very aware and in tune with things like that. She cried when it was actually happening. From then on, she slept alone in her room for weeks. I didn’t know until later how lonely my mother was, until I found some journals that she had written after Daisy died. She wrote a draft letter to her best friend Noreen about how lonely she was after Daisy died but felt better when the birds came, because it brought life into the house and we all knew that she loved Tonya as well.

Bottom line for my situation is that having pets in the house was a great thing for my mother. There was no debating about me going to work every day…we needed a paycheck. So, having pets helped to fill the void in her day and gave her someone to look after, giving her a purpose. I think everyone’s situation is unique and different, so a decision should be made on that basis. But in the end, I’m a fan of having pets in the house when caring for a dementia or Alzheimer’s patient.

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