Excellent points on relinquishing your practical caregiving role from Dementiachallengers -which offers advice and stories about caregivers of people with dementia (http://dementiachallengers.wordpress.com)
Family occasions that may be beyond understanding for your FTD partner. Births, deaths, accidents. All out of their scope of comprehension.
Even though they may have celebrated loud and large for many years, the time will come when they no longer recognize those red-letter days. Even their own birthday. Or yours.
Or your anniversary.
Although we had been married for 35 years, my husband continued as though it were just another day for the last 2 years of his life. The first time, he only became aware because our son gave us a card. When he realized, my husband was devastated. After 10 minutes he had moved on to something else.
Our granddaughter died of Sudden Infant Death Syndrome three months and seventeen days after she was born. When he heard the news, my husband was hysterical.
For about an hour. Then he moved on to playing with our grandson on the bedroom floor. They had met when we visited for one week when she was six weeks old. Later that evening, he looked at the photos of all our grandchildren and gestured “Which one?”. He knew something had happened but not to whom.
After that night, he never mentioned her again.
My solo journey through the catastrophe made it doubly tortuous.
I’m not sure that one can adequately prepare for these continuous virtual slaps in the face. Figuratively speaking that is. Those days that were once so precious in your memory become just that.
Your day is consumed with Adult Day Care, household chores and the continuous performance of Charades that has become your life.
Depending on the severity of your loved one’s decline, you may have other duties. Keeping him or her clean and dry will take you back to when your children (if you have them) were small. If incontinence has become an issue, you will be plunged into the world of diapers/spare underwear. Spare pair of pants. Spare tee shirt. Attending any kind of function requires the same military precision as a trip. As well as carrying supplies, you need to:
- Plan a route to and from the venue. Knowing where you are going will lessen the chance of frustration at getting lost.
- Check out the entrances and exits, the location of the restrooms.
- There may be people attending to whom you will need to explain your loved one’s condition. If social filters are severely eroded, warning people in advance can make less fraught interactions.
- Other people may be embarrassed by your FTD’ers behavior. You can take one of two routes here.
1) Consider it their problem and not yours or
2) Explain what is happening and then refer to 1).
Try and divert your loved one’s attention away from alcohol. If they have always liked to drink on social occasions, try surreptitiously substituting the non-alcoholic variety. It worked for me.
It is another one of those things that you have to learn to do alone, before you are alone.
Celebrate. Even when you don’t want to.
Continue to share happiness and warm feelings. Treasure them, remember them. Lock them away in the storage room of your mind.
A community event to raise awareness of Frontotemporal Degeneration