Sometimes all you can do is trust your gut instinct!

http://www.dougwornell.com/

A great link with info about the differences in the types of care facilities that are available.

I appreciate so much his statement that ultimately you have to just trust your gut about the decision.

I agree that you can do all the research and check all the references- but it all came down to a blind faith gut decision.

One good turn....

I can't believe it has been over a month since I last posted here. Time flies I guess.

The idea of one good turn deserves another has different context when you are loving and caring for a dementia patient. Patience does help however! A dear friend gave me the book Passages in Caregiving by Gail Sheehy- if you are caring for a family member, it is definitely recommended reading.

Part of the recurring theme of the book is that just as you have something figured out and think it is working- then something happens to change it all up. As I talk to other friends who are acting as caregivers to their family member, it hits home again and again.

In the most recent scenario, a friend's mother was progressing through the passages of dementia. The previous plan needed some augmenting- more assistance was needed to help. So, the first turn was to add more help. This is not always an option- but once they got a routine established- it provided some immediate relief. But then...

Falls, progression of the dementia, not recognizing people- but safe, at home and with a great caregiver. Then the calls began, more doctor visits, a trip to the ER and finally choices about extraordinary measures. Several turns within not only days- but some within hours.

I look at this in comparision to the turns and twists that have been my path with my father. Different definitely. No two trips through this disease will ever be the same- but the empathy between caregivers and family members is universal.

Am I the only daughter to have to deal with being the one to take away her father's drivers license. Not a chance, but did I have the same experience as someone else- ABSOLUTELY NOT! Of course, I may have been the only one to utter- "If you want to come back again, one of your OTHER daughters will have to bring you!" 

Am I the only child of a parent with dementia that feels the sadness of the empty eyes that don't recognize the person they are looking at? No. Am I the only child that wonders what the next turn will be, and if the right decisions were made at the right times to deal with the turns that had to be made? No.

I leave you with- try not to work in chaos mode if possible. Have a plan- even if it needs adjusted or turned around- a basic plan to work with helps. I had started to use some caregivers as the need for assistance increased. This meant when I needed more help, a process was in place.

For my friend who had to make tough decisions- that I know may happen for me, to know that a living will and health care directives are in place and provide guidance for the family and health care professsionals.

All in all, even with the best laid plans- we just wait for what the next turn brings.

There is a person in there.

It may not be exactly the person we knew and loved, but there is a person still inside there. I saw this article come through today about pairing medical students with dementia patients. What a great reminder for medical providers.

Alzheimer's program teams up patients, med students

We have been through a roller coaster of med, changes, moves, changes and more since the beginning of the year. There are days I wondered if some of the people interacting with my dad remembered that there was a person in there. 

Just the other day- a reminder of how much of that person is in there. Tragically, an encounter between my father, Max, and his grandson became a time of sadness. There was some recognition- which continues to surprise us at it randomness. Grandpa remembered going to graduation "over there".  Moments later a look of melancholy, that can hardly be described, turned his expression to one of total sadness. Max had a personal acknowledgement of how he couldn't put all the pieces together and embrace someone who was very special to him. His entire body was immediately drained of energy, and as he put his head in his hands- just one simple phrase, "I don't feel well". 

Again the divert technique- my sister and I helped him to the car and the plans for the morning were abandoned.

I reach out, with this thought, to other caregivers, family members, grandchildren and the special people who help us care for our friends and family members- "Thank you for helping us all keep our dignity and respect as we travel this winding road."

"Today is the day I've been dreading..."

I don't seem to be the only one of my peers/friends/acquaintances with this quote. I have waited for it for years, and just saw it the other day from a dear friend. You never know when it will happen, and from my point of view you aren't really prepared for the first encounter of the blank kind. It may be talking about you personally in 3rd person, or just a look- when coming from someone so close to you only you can realize that there is a disconnect. 

According to the Alzheimer's Association- People with Alzheimer’s die an average of four to six years after diagnosis, but the duration of the disease can vary from three to 20 years. In my father's case- this disease has been progressing for almost over 5 years. I know that an emergency surgery that he had at 90 years old- 5 years ago, did not do us any favors. Although it saved his life from a ruptured appendix- the general anesthesia for a man of 90 years old was a noticeable problem. 3 weeks after the surgery, he couldn't remember how to play a game that we had played for years. We, the children, wrote that off as a "re-boot" of his brain- after all most everything was "normal" for a man of 90. He still got up every morning- got dressed, shaved, walked, made breakfast, so all was good.

Little slips were just chalked up to being tired, we did too much on visits, he was just trying to ask questions to make sure he understood what was going on. He was engaged and proactive about taking care of himself... or so we liked to believe. 

I went to a continuing education class 5-6 years ago. I concurred with so much of what was said- the first step from living alone in one's own home to independent living was a change that was better accepted when done by the person (parent) directly than the children.

That was the first turn- moving from the family home to independent living.....

More later.

 

Defining chaos

Welcome to the wandering and wonderings that are that of my life. I have had lots of titles and descriptions (some I am sure I don't know of) through my life. Little sister, friend, designer, mom- but it has been something how all of those cycles created the title I now have- caregiver of a father with dementia. 

The thesaurus has as a definition of distract- to divert attention or confuse. The opposite is to clarify or explain. The unfortunate thing I am learning as this disease progresses- there are no explanations, and explaining things only adds to the confusion or chaos. 

I intend to allow myself some personal ramblings in this blog- and still hope to provide some insight and the potential to prevent some of the stumbles that I have encountered along the way for others. 

Through all the encounters- my goals are to keep my sanity, and provide the respect and dignity that is deserved for my dad. I always end up reviewing option and trying to use my insight from dealing with people and how they live to support these goals, and make the best choices. 

More later-