Sunday, March 23, 2014

Dementia & Caretaking ~ My Journey Comes To An End

Well if you don't keep an eye on our Facebook page you are probably wondering what happened to me for the last week! 

 For the last five years of my life I dedicated to taking care of my Grandmother. The dementia took her long ago and there had been a lot more bad days the last few years than good but I was carrying out her wishes all the way to the end. 

My Grandmother took me in after we lost my Mother and my younger Sister when I was only 11. My Great-Grandmother came into our house when I was probably 16 with the beginning stages of dementia so I had first hand knowledge of what it does to someone. Too young to fully understand but will be the first to admit that a lot of the little quirky things that people do with dementia were funny to me then but when they were happening to me I was beyond mad. 

Gram came to live with me at the age of 74 at the beginning of her dementia diagnosis and after breaking her hip. She was well enough to be on her own during the day for the next year and a half before things turned and she needed more full time care. At that time I left my job that I had been for 7 years...a scary decision at the time when I was already a single Mother...but the couponing and cutting back the year prior I knew that we would be able to manage. 

It was shortly after this that I began to feel like I was losing my best friend. The feeding tube came shortly after this and it created so much more hatred in her than I had ever seen before. I can't imagine that it was easy but I tried to do the best that I could with making her happy and not having her hurt herself everyday. Getting out of the house was a huge fight. I had a little help during the 4th year when she was able to attend an adult daycare twice a week. I at least knew that I would be able to get out of the house those days and either go shopping or get my running around done. 

And after Christmas everything changed. After years of asking why it wasn't her time her body started failing. No more pushing her to try to do things. No more doctors trying to figure out what was wrong. I started asking what happens when she starts to bleed out from the internal bleeding that they couldn't find and would come and go...and knew that she was done fighting. Three trips to the ER resulting in three times being admitted into the hospital, scope tests, transfusions, and a trip to rehab where she stayed sick, I started to ask questions about bringing her home where she wanted to be. I am thankful I was able to push for Hospice to come into the house to help me out. Had they not been coming in and preparing me for what was going to happen I don't think I would have been able to do it. 

She didn't have a last good day that you often hear about. Hers was about a week before where she called me by name for the last time and told me she didn't want to do it anymore and that she didn't want me to do it anymore. I reassured her that I wasn't going anywhere and that she wanted to be home so that's where she would be. The next week was a lot of moaning and grunting and she wasn't quite there.

I waited a long time to have the conversation with my daughter about her Nana being sick and that she wasn't going to be getting better. I definitely waited longer than what people thought I should but going through family deaths when I was young I knew what would need to be done at the time. I had the conversation with her two days before Gram passed. The night before i had gotten only 1 hour of sleep so Friday night I had the computer off and was ready to head to bed around 11pm...very very rare for me to go before Midnight. And something caught my eye...I ended up staying up and around Midnight Gram's breathing changed. I went in and pushed her morphine and started reading through the paperwork as I knew we were approaching the day/hours stages of hospice and completely broke down. And last Friday around 2am Gram had taken her last breath. Beyond happy that whatever it was that was pushing me to do these things and stay up happened. Happy that my friends that I called on that night to be here with me came. And happy that Gram was no longer in pain and struggling. 

The last week has been hard. Looking at an empty bed in her room has been the hardest. And now having to figure out going back to work and where do I go from here is scary. Kind of like for the first time I have to be an adult again. And even having my friends around I still feel so very alone especially in my house.  

I am proud that I ended my caretaking journey so much stronger than I ever thought I would be. Playing nurse wasn't something that I imagined when she came to live with me but overcame as there was not many people who were here to help. I know that it's hard to see your loved one and what they are going through. I had many times where she called me names and things and I would just break down. I would not take one thing back in these last five years. 

If you are a caretaker I would love to give you a hug. You have to show so much strength on a daily basis and you probably don't get appreciation, pay, help or the thanks that you deserve. But knowing that the person you are doing it for is all that matters. If you know someone who is a caretaker, ask them if they need some help. A day off. A few hours off. Even someone to come over and talk. Make a weekly date to bring them coffee or something. Adult conversation wasn't something that I had very often the last few years that wasn't on the phone or on a computer. The last year I was really only out of my house for maybe 8 hours a week. How many times all I wanted was a few hours to take my daughter to a movie. And we know that it's not something that everyone can "handle" as it's very tough to go through some things, but stepping in just a little to give even a tiny break would be refreshing. After while I just becomes tough having to ask for help and you pick and choose when to ask. Trust me it will be welcoming and helpful in more ways than you probably imagine! 

As for me and the blog...we aren't going anywhere. I started this while I was working and was able to put so much focus into learning new things in the last 3 years while I wasn't working. We are going to focus on bringing you more deals and goodies on a daily basis and moving forward from here :)

Leah Shumack is the voice behind Clair's Freebies. Born and raised in ski country Western NY where I still live today with my beautiful 8 year old daughter. When I'm not tending to her or out scoping deals I enjoy entering giveaways and trying out new things in the kitchen!


  1. Dear Clair, I am sorry for your loss. And I know words won't heal the wounds or dry the tears, I know that sorry's don't fill the emptiness. I also know that you are strong, and many people (including myself) Could never imagine a care-taking roll, and that you have a beautiful heart! Heal in your own time and we will be here for you if you need us....

  2. This is a beautiful post, Clair. I know how difficult this journey has been for you and I've told you before that your strength and perseverance amazed me. I don't know that I could have handled it, but you did and I'm sure your grandmother appreciated it.

    Continue to spread the awareness of how important it is to have help. I hope it makes a difference in someone's life. I'm just sorry that very few were there for you when you and your gram needed them the most.