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It's the holiday season and if you're like many who are caring for a loved one with dementia, the season may not feel so merry.
Memories of better times may surface as reminders of what you've lost or what has changed. Often it's a time when you believe you should be happy, yet increased stress, disappointment, and sadness are the prevailing emotions.
At the same time, you may think that you should live up to expectations of family traditions and how things ought to be. As a caregiver, it isn't realistic to think that you will have the time or the energy to participate in all of the holiday activities as you once did.
And for the person with dementia, the holidays can disrupt the sanctuary of the calm and structured routine that suits them best. I have two general themes for caregivers and families to follow during the holidays:
Pick and choose which traditions are most important to you and which you can live without. Think about ways you can modify traditions that will still provide meaning to you and your family. Here are some ideas:
By adjusting your expectations and modifying some traditions you just might find the real joy in the season comes from simply being and reminiscing with the ones we love.
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Angela, thank you very much for your gentle wisdom on managing Alzheimer's and other dementias. While I appreciate the curated information from the Mayo Clinic on clinical trials and other treatments, your counsel is distinctive and I share it often.
My mother has moderate dementia, probably but not definitively AD. We have been on this journey for at least four years, probably longer. It has changed our lives in a host of ways. My mother-in-law also has deteriorating health with cognitive decline that does not appear to be AD. Fortunately, they live in the same senior community, on the same floor.
We keep holidays very simple. Music is a wonderful and simple offering that both mothers love. We have good, healthy food and endeavor to have it before dark so that the mothers can return home and settle for the evening. We have one holiday meal out and one meal in one of the apartments. Decorations are simple - no lights but a simple brass tree with a few ornaments. We have traditional, good-smelling wreaths - fragrance is welcome if not overdone. We worship at a 2:00 p.m. service - peaceful, less crowded, and in the daylight.
We also try hard to remember others in ways that are meaningful to the mothers. We give gift cards that benefit charities important to the mothers. We try to include other seniors in the community who have little family support.
So, simplify. The important things are the most basic.
This is not intended for those who spend a lot of time with their Alz affected relatives... it's for those who can afford to pay for private care, so they just don't have to do the hard stuff. Yes, it is a heartbreaking disease. Can you imagine how scared they must be? Most can feel & see their control slipping away & it's not very comforting to not have your loved ones there to help them thru it. Alz patients don't loose their IQ, they are still inside that troubled mind...they need you so much. I am a caregiver for Alz people...most of them love me & are happy to see me...but I am not one of their children, I cannot help them with memories that I didn't grow up with. My heart was so broken this Thanksgiving when one of my regulars was left with just me... no dinner, no family & when she figured out it was Thanksgiving & nobody was coming to get her, she was very hurt..but mostly for me as I couldn't be with my family for having to stay with her. She tried to get me to go home....
One of the hardest things we had to do was to decide that it was better for our mom to not take her to whichever relative was having Christmas that year, but to let her stay in the nursing home. She rec'd very good care there & both my sister & I did spend time with her on that day. More people than that was too hard for her and made her very anxious. She did love going for a ride just to look at the lights and decorations and this time each year is bittersweet for me as I realize how much pleasure I received from her childlike awe of the Christmas lights. I do miss her so much.
My mother-in-law was diagnosed this spring. Though we've only seen small changes, I'm scared and sad that this Christmas will be our last normal Christmas. My husband and brother-in-law seem to almost be in denial about it and I just don't know how to handle our "new" family. I am looking forward to being with her this year, as always. Love love love her.
I can so much relate to Robby's comment. My mom has been in a nursing home with Alzheimer's for a year and a half, although she had dementia a few years before that. We use to have big family holiday celebrations, but now the family is so fragmented. My mom is unaware of the holiday, and I sure miss her.
my mum is now 6 years in a nursing home.....and every christmas since shes been ill .....christmas has never been the same.... we always had a big family day but thats changed too....and smaller family groups have evolved ...just not the same anymore....
My Mom is in the early stages of Alzheimer's and lives next to me. We are keeping things simple for her, gifts will include a small box of her favorite chocolates, a calendar, family pictures, etc. She is comfortable with my husband and the grand and great grandchildren, so it will be a slow enjoyable day. I'm her only caregiver. Is it worth it? Yes, everyday we get to keep her is worthwhile to all of us.
When Alzheimer's is combined with severe heart disease and diabetes, and living with a caregiver, the holidays for the person is fairly easy. The really hard part for this caregiver is missing the interactions and festivities with friends and family. So much time is spent with the one at the end of life while missing the lives of the children at the opposite end of the spectrum. Balance is so hard to find. Hired caregivers are here during the day while I work, and then I take care. It's not hard, it just engulfs life. He is happy, but I wonder each year at this time if that is worth the cost.
My mom had alzheimers, she has passed away about 4 years ago. But what I use to do for Christmas was go to the nursing home & spend the day with her before Christmas. She liked being alone with me. It was too confusing for her to have alot of people visit her at the same time. She loved the one on one visits I think the best.
My 93 year old Mother has dementia, and most of the time does not notice changes around her. My brother still put up her Christmas tree, but the lights do blink.
Could be the reason for anxious days lately. We'll fix
As we did at Thanksgiving,I'll cook at my house and take enough food for Mom and her caretaker to Mom's house next door. My brother and his wife ate lunch with Mom, and my husband and I went later for leftovers and visiting which was sweet and sad.
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