My mom has dementia.
Last week I was able to spend some really nice time with my mom and it was just what I needed. I also think it was what she needed.
I have shared with my readers previously that my mom is in a memory care unit at a facility in Ohio. Her diagnosis of dementia was made several years ago and we have watched the progression as she moved from independent living to assisted living to her current memory care unit apartment.
Dementia is gradually taking my mom away from me but I am determined to hold onto her as long as I possibly can.
Two of my siblings, my brother in law and one of my nieces came one afternoon to visit and to have a pizza party with her. She seemed to enjoy the pizza but anytime there are more than a couple of people around she retreats into herself and becomes quiet. I have noticed this becoming increasingly the case over time and I think she gets lost in all of the conversation which is kind of understandable. We can be kind of overwhelming when we are together. In a good way but still. To someone who is struggling it must be just a bit too much.
The day after the pizza party I went back to see her late in the afternoon. Yes, I had told her I was coming and yet she had forgotten. When I left I repeated that I was coming back to spend the entire day with her the next day and she was thrilled.
When I arrived the next morning she was laying sideways on her bed. The staff had warned me that she was sad when they got her up in the morning and crying so I was prepared when I entered her room. But maybe not prepared enough.
Sometimes you just have to do what feels right so I just laid down on the bed next to her and started talking to her. I have to admit it was really hard to see her looking so frail and distant but after she realized it was me (and yes that is a gift) she told me she was sad because she didn’t think she was going to see me again. I assured her I was there all day and she couldn’t get rid of me.
Her air conditioner unit was not working correctly and the maintenance man came to repair it and so I repositioned her on the bed and laid down beside her. We spent an hour that way and I just continued to talk to her and we had a really nice visit.
Dementia is such a weird thing. It slowly robs the individual. The official definition is as follows:
Dementia is not a specific disease. It’s an overall term that describes a group of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person’s ability to perform everyday activities. (www.alz.org)
I have learned a great deal during this journey with my mom and am still learning. Every conversation is new, every day brings a new challenge and I have learned to accept the changes a little bit better each time. Here are a few tips if you have someone you love who is on the dementia journey.
- Just be present for them. They may not remember the next day or even the next hour that you were there but I truly believe it makes a difference in the moment.
- Try to refrain from saying “remember” . This is a tough one because it is a natural part of our vocabulary. Sometimes when I share with my mom I talk about things that I remember from my childhood with her and she enjoys hearing those stories even if they are new stories to her.
- Touch is so important and I never miss the chance to hold her hand or just have a hand on her arm when we are together.
- Sharing pictures of what I have been doing or of the family always perks her up. I am making a Helen’s Family scrapbook with simple pictures of the family with names so that she can have that on her coffee table to pick up and look at when she can’t remember who is who.
- Even if the story that she is relating sounds off the wall and impossible don’t disagree and indicate that it didn’t happen. Just go along with it and affirm that the story is real to the person. It does no good to disagree and usually only aggravates the situation. It is very real to the person and just listening to them relate it time and time again is what is important. I do try to redirect the conversation as quickly as possible if the subject is upsetting to her.
- Talk to the staff. They are trained to know what to expect and what is best for your loved one. They are a valuable asset and it is important for your loved one to have staff that is engaged and who know that the family is engaged as well.
I am not an expert by any means but I do know that so many are on the same journey that we are on with my mom. It’s not easy but I am blessed with each phone call and visit. I still have her and I still need her. Our roles have changed a little bit but she is still my mom and I love her. I miss the way she used to be but I am embracing and loving the new version just the same.