This blog is mostly dedicated to sewing, but from time to time, I will be talking about dementia because I am on that journey with my mom right now. Unfortunately, for the past few years, I have had to watch my mother decline due to dementia. When we first started this journey, I thought that dementia simply meant memory loss, but I soon learned that is not the case at all. It is so much more complicated than that.
My mom has dementia. I’m not really sure what type; one doctor said that she has Alzheimer’s, but there are over 70 different causes of dementia. Personally, I think my mom has vascular dementia, or perhaps a mixed bag of Alzheimer’s and vascular dementia, although her symptoms lead me to believe it’s the latter.
In my mom’s particular case, she has behavioral issues that surfaced one year ago this past December. She woke up in her wonderful assisted living facility and didn’t recognize her own room, her own belongings or any of the staff members. Ironically, she did recognize me when I arrived to visit. She had been residing there for fourteen months at that point so this was highly unusual. At first we thought it was a medical issue, and that was partially true. However, it soon became clear that my mom had progressed to another stage of dementia. At that point, it became clear that we had to move her to a locked facility, which we did, and shortly after she adjusted, she fell and fractured her pelvis. Thankfully, re-entry into the locked facility went well after hospitalization and rehab, and we had a period of relative stability. Until this past December….
My mom had started refusing to get out of bed, refusing her meds, and often refusing food as well. Because we knew she had an ongoing UTI (urinary tract infection), and three antibiotics had not cured it, the decision was made to put her on Hospice in early December, 2011. Since that time, she has had many behavioral issues–biting, hitting, scratching, refusing to get out of bed, refusing to allow the hospice aide to shower her, refusing food, and usually refusing her medicines. This behavior isn’t every day or all the time, but each new day is truly a new day regarding her behavior. Some days, she is pleasant and smiling, giving out hugs and kisses; other days, she exhibits the undesirable behaviors. Thankfully, hospice has provided a topical gel that helps calm her down. Due to her symptoms, I now have to call the facility before I visit to see what kind of mood she is in, and if it is a bad day, I can’t go visit. These days, I am lucky to actually see my mom twenty minutes a week. I try to go visit twice a week, and about ten minutes is all she can handle. If you have ever walked in these shoes, then you know how painful and heart wrenching it is to watch a loved one go through this horrible disease. Sometimes I think the disease is harder on the family members than it is on the one who actually has dementia.
Because this journey through dementia is so difficult on family members, I would like to encourage those of you who are fortunate enough to be spared to find a way to encourage someone you know who may be traveling on this same journey. The caregivers are the ones who will need the most encouragement. If you think about someone who is a caregiver for a dementia patient, give them a call, or offer to do something for them. Sometimes, all we caregivers need is a hug, or someone to listen to our sorrow and pain; we don’t really need anyone to do anything necessarily, but just being there is a great gift.
If you know a caregiver for a dementia patient, whether or not the dementia sufferer, is placed, please take the time to give the gift of just being there for the caregiver.