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"I'm so glad you're here"; the "OOHooh" when I hand her something she loves to eat and she gets a sparkle in her eyes.
The one time she suddenly wanted to go sit on the porch--an extreme rarity. It was 9 p.m. and it was windy and dark and cold, something she didn't know. When I told her of the conditions, her body language was of such abject disappointment it broke my heart. I bundled her up, and we had a grand five minutes on the porch, watching the quiet neighborhood, until she had her fill.
Years later, 2013-2016, it was my father in his late 80's. I was retired then so I could do it and wanted to. The big positive is that my father and I finally got close after many years of kind of butting heads. We were a lot alike. In caring for him over time, I realized how much I loved him and how much he loved me. That special handshake that we had every night. Wouldn't trade it for anything. Loved working with a sister that gave me a break sometimes in spite of her Fibromyalgia. Brought most of my sisters and I much closer.
On the practical side, I was proud that I handled things even though there were times when I thought I would really lose it. It made me stronger. I liked figuring out ways to do things more efficiently, ways to help him.
There had to be a routine which was good for me. I got better at cooking. I tried making my great grandma's recipes which my Dad still had. It was fun to talk about them and get his input.
I made a booklet of his WWII Navy pictures and his recounting of those days - a time that meant so much to him. He wrote things down on the back of grocery receipts - hard for him to write much - and I put it together and made the booklet. He got to review and edit it all along the way. We gave one to everyone in the family. Great experience. We talked about so many things that happened in his life. I got to know him.
I grew a little garden in the year that he was doing better and we had great food out of it. We both loved it and would check on it every day. It was a nice shared diversion.
I lost weight and got in really good shape from all the work, stairs, etc. We would exercise together with the stretchy green bands and weights.
At first I was kind of incredulous that I was in that situation. He was always so independent - it was shocking when he finally had so many health problems. At first I thought it would be temporary - his care. And then I felt like I had no life - and believe me, it was stressful. But then it became my life and I was into it. We did things together and we finally had a relationship after so many years. What could be better? He often said I saved his life. What could be better?
And then it was over. I miss Mom and Dad and would give anything to have it all back.
I bought a tape recorder and record my Mom so later on in life I can listen to my Mom and her stories as well as her singing songs (I print out the words to songs she loves).
Mom even with her dementia still has a great sense of humor and cracks me up which lessens the burden of caregiving. We have our special moments where I take my Mom to stores she enjoys going to or just car rides to look at the scenery.
Last week I took Mom to the beauty shop and she got the most wonderful hair cut which made her so happy. These are moments that I treasure... Just that look on her face.
Of course caregiving for my Mom is not all roses and sunshine, there are some very tough days but they pass and then I have a good day...
I'm happy that I'm my Mom's caregiver because I don't know how much longer I will have with her.
There ARE positives to caregiving, though the negatives are often much more prevalent in our minds, because the negatives happen every single day, while the positives are little rarer - especially in the later days of caregiving.
Positives from my experience with my mom:
- I got to hear her childhood stories and write them down. There are still holes in the story, but I got to hear stories I'd never heard before, because I was here 24/7 with her.
- I was able to provide healthy food for Mom, which meant even though she only had a few years left, she was healthier and felt better those last few years, than she had in years before, because as the decline progressed, neither she nor dad would cook - they ate junk food and fast food or ordered pizza. I was able to get her on a lower-carb way of eating with more fresh foods and fewer processed foods - she lost weight and her cholesterol dropped by a huge amount. Her doctor (who told us low-carb was not the way to go) was astounded.
- Dad was not a fan of cable and refused to have cable tv in the house. Therefore, they relied on an antenna and watched 5-7 channels. Mom LOVED old movies from her youth, but couldn't watch them unless they bought them on VHS or DVD. When I moved in, I brought my satellite service with me, and Mom was thrilled. It was a joy to me to watch her enjoying those movies, and for her face to light up when a particular movie star came on the screen. Simple pleasures.
- Mom traveled more in the last years of her life than she had in about 20 years. As the decline progressed, travel was curtailed for both mom and dad. I took mom to her favorite places, and when I decided to have the floors in the house refinished, we spent 2 weeks in a lakeside cabin so we wouldn't be in the way and exposed to fumes while the work went on. Mom loved it - she never really ventured out much but just loved sitting in the cabin and looking out the window at the lake.
- Mom's sense of humor was intact until the day she died. She could come up with some real hilarity sometimes, and I would have missed that if I wasn't here.
We went out to restaurants, we spent holidays together, she met my amazing friends who did not shy away from Alzheimer's. Mom used to be a ballroom dancer and loved music; she would dance anytime music would come on. At the mall, at daycare, etc. My 90 year old mom danced at a bar with my friends husband during a birthday party, we went to visit a Sunrise facility during an event; they had a band and she started dancing the Cha Cha. The mood changed in the room, other residents got up and danced, people started recording her on their phones (she probably on Utube somewhere). It was fun, we had fun.
So amiss the heartache, the struggles, etc. - I actually had fun with my mom. And now that she is in memory care - I miss her, I really miss her. But I am so grateful for the good times we shared.
I have shared the joy of seeing Mom playing with her 2 year old great grandson - both of them delighted in the other. Seeing that little boy accompany my mother on her daily walks up and down the street makes me wonder how many years he will choose to be her walking companion.
Mom and I used to talk about current events and books we had read. Since Mom's short term memory has mostly left her, we talk less about current stuff and more about what her life was years ago. I have heard more stories about her early life and her grandparents, parents, siblings, and cousins in the last year or so than in the previous 40. We've been going through old photographs and she identifies people and tells me about them. People post old photos of the area on a facebook group and I print them off - she recognizes almost all of them immediately and has a story or two there too. Her great-grandchildren like these stories too and will sit at the dining table asking her questions about the photos and the people. I cherish not only the stories of my relatives and hometown 70+ years back but the pleasure of sharing Mom's company.
I cannot promise Mom she will always live here. I can promise that as long as I can adequately care for her in my home (even if we need nursing or assistants to come in daily) she will remain. I can promise her that if she ever does need nursing care, we can get her into a good home and visit her daily.
When Mom is gone I will miss her greatly but there will be no guilt. I will have the satisfaction of knowing I helped her live those final years in contentment and even some joy.
When my brother said he didn't want any of his kids to have to ever take care of him, I told him to let them if they wanted to, because it is such a blessing to be a caregiver for those you love.
Making my mom laugh.
Getting her to dance all silly
Surprising her with little things that make her feel special.
Knowing that she (finally) has faith in me and trusts me completely with her care.
The fact she gets to live at home and not a care facility.
Making her feel safe
Making her feel good and not embarrassed when there are accidents.
Seeing all I have accomplished and what we have accomplished together.
Getting my mom to realize the joy in her life.
It's a rough and tumble ride but I like the feeling of having a purpose, knowing I'm doing it to the absolute best of my ability, and I will have no regrets in the end.
We are taking one day at a time.
My goal is to be creative, courageous and kind.
Luckily we are retired and he is able to use the bathroom.
Lots of deep breathing and quiet naps for me. Keeping chaos out of our home.
But it is a difficult time as you know. Thank God for this group.
But, being her caregiver has also allowed me to pursue my dream of teaching real estate. If I were working full time, I would not have the time or energy to pursue this professional dream. Teaching real estate (part-time) has given me tremendous job satisfaction, and it is a marketable skill I did not have before I became my mother's full-time caregiver.
Besides, I now appreciate a generation of actors and musicians I would have never known; cook more family recipes instead of eating frozen; and have countless memories that I cherish.