Needless to say it can be shocking when your loved one receives their Dementia related diagnosis. The unfortunate reality is that a lot of times there is very little guidance about how to provide appropriate care for your family member within their home or yours. I have heard similar experiences from family caregivers across the board. The lack of educational resources provided at the time of diagnosis is sorely being missed.
Here is a real life example of how denial of the diagnosis and zero educational resource support from the primary care physician almost killed a client of mine. This story was told to me by my client's son when I first became part of her care team.
It had only been a couple of weeks since L., my client, had been given the official diagnosis of early onset Dementia by her primary care physician. She had been going to this doctor for thirty something years. I remember the anger that L's son had when describing how she had been treated by this long time doctor. The only advise that he gave the family at the time of diagnosis was to take her home and feed her some chicken noodle soup. "She'll be fine," was his exact words.
Things were far from fine. L wasn't eating or sleeping, nor did she have any recollection of the diagnosis. This once vivacious and independent women hadn't relied on anyone's help for years. Her behavior had become so bizarre that most of her friends stopped coming by or calling. Her sons were busy with their own lives and kept their distance. The only person that was there was her long time companion who lived a couple of doors down inside the same condominium duplex.
At this point in time, the denial across the board about how far into the illness she was actually at was rampant for her family. So L's companion did what he normally did; he stopped by in the morning bringing her a croissant for breakfast and having coffee with her before he went to work for the day. In the evening he would stop by again for dinner and then go home. He never was able to stay for very long because L's behavior was so unpredictable and she was often times very abusive towards him and his efforts to show some care for her well being.
One night, she a moment of clarity, enough to realize that she wasn't feeling well at all. Somehow, she managed to get herself to the hospital which was only a short drive up the road from where she lived.
I am sure it was a scene when she arrived. She probably had her beloved parrot on her shoulder when she walked into the ER... Separation from him was nearly impossible, especially in the early part of her home care.
The emergency room doctors and nurses quickly understood what was wrong with her.
She was a 95-pound older woman living alone with Alzheimer's who was severely dehydrated and emaciated from lack of food, water... and an inappropriate level of care. Adult Protective Services were called and her family had a very rude awakening into what her diagnosis really meant for all of them.
24 hour care, 365 days a year. They had only two choices; provide in-home care for her or put her into a home. They opted for the in-home care route and were successful in keeping her in her home for another 4 years.
For those of who have gone through the diagnosis process with your loved one, I would love for you to share your story or comments about your experience. The more that people share, the more we can help to create better education and training for family members who choose to provide care at home.
Contact me for a free 30 minute Caregiver Support Coaching session. You'll be amazed at how just one session can immediately solve the most basic communication problems you are having with your loved one.