Jun 4, 2015

A very personal story from Carole Larkin

Only twice in my ten years of consulting with families with a member who has one of the dementias have I cried over one of my clients. The second time happened 2 weeks ago. Here is her story.

A very personal story from Carole Larkin

It’s very, very important for me to maintain my professional “distance” from my clients so that I can provide the families with clear, independent, unbiased answers and advice.

I’ll call her Ann. It’s not her real name, but I do this for family privacy. A little over two years ago one of the neurologists in Dallas who refers patients to me told the family about me. The daughter that lives in Dallas called me and I started working with the family.

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Carole Larkin MA, CMC, CAEd, DCP, QDCS, EICS is an expert in Alzheimer’s and related Dementia care. She is a Certified Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementia issues. Carole can consults with families via telephone nationwide on problems related to dementia. Her company, ThirdAge Services LLC, is located in Dallas, TX.

By Carole Larkin
Alzheimer's Reading Room

Dad had been caring for mom in New York. Apparently there had been an “incident” between them that caused their 3 daughters, who where spread around the country, to bring Ann to Dallas to stay with her daughter for awhile. This was not a totally unknown occurrence.

There was a family history of Ann escaping to one of her daughters houses when things between her and her husband got too heated. Let’s just say that it was a pattern.

This time though, Ann’s dementia was far enough along that the girls knew that it had crossed the line of dad’s being able to care for her without further anger, frustration and continuing incidents. The girls decided that Ann would stay in Dallas, and got their father’s consent for that plan. Ann’s daughter in Dallas, a single woman who had to work for her living could not keep her in her home. The cost was too high both in terms of money and in terms of stress for her. I came on to help find a memory care community for Ann.

When I met Ann we bonded right away. I grew up in her home town and we knew many of the same people and places. I introduced her to Starbucks skinny caramel frappicino’s and we were friends. I found the right memory care for her, and worked with the family to get her in.

I remember that it was a white knuckle day, the day we took her there. She was a flight risk, and we knew it, as it was a pattern with her. On top of that she was an angry and highly agitated woman, mostly in regard to her husband. 

We warned the community that she would try to “elope”, and boy did she ever. This was a high rise building and the memory care unit was on the 4th floor with all doors on a keypad for entry and exit. Nevertheless, she was found in the parking lot twice and in the first floor lobby once. She was very clever at finding ways to get by the keypad system. It took her 6 months to “settle in”, but she finally did.

Once “settled in” and finally feeling safe and secure she lost her need to flee. Her attitude and really her whole personality changed. She was warm and calm.

She actually became the unit’s “greeter” and showed the new residents around and helped them get adjusted. The transformation was astounding. She was happy and at peace. Her daughters were happy and at peace. Even her husband felt good about her being there because he knew that she was happy and at peace.

In a strange and unusual way she was happier than she had ever been in her life, the daughters told me.

The dementia was a blessing, they said.

Two years passed with her dementia progressing rapidly in that time span. I would always visit her when I was in that community for my other clients. I was called to be her advocate when she was taken to the emergency room. She’d would always say when she saw me in the ER, “What are you doing here?” I’d always answer; I’m here to help you take on those darn doctors. We’d laugh, and go on about the business of getting her well. She always recognized me, although she didn’t remember my name.

I watched her progress through her disease. A couple of months ago when I was called to the hospital for her, it immediately became clear that this hospitalization was different. She had been losing weight for the past couple of months, and it was thought that she had a gastro intestinal infection. The hospital found no sign of an infection though. I asked them to have the speech therapist do a swallow test, and that was it. She had begun to not be able to swallow. That’s why she had been losing weight so rapidly.

The daughters and I met. I laid it out to them what was happening and what it meant - she was now in the “end stages” of her disease. What course to take? We discussed hospice rather than aggressive action ( a feeding tube). I asked what Ann’s wishes were. The girls said that their mother had always told them that she did not want any life extending measures taken. We consulted Ann’s advance directive. There is was in black and white. The course was clear.

The memory care community where Ann was living had been sold within the last six months and there was great staff turnover there. We discussed, and the girl decided that instead of sending her back to that community, when she was released from the hospital, that she would go to a small residential care house that specialized in dementia, and that she would spend her last days in a home setting with a higher level of care than was available at the original community. It was the right choice.

We brought in one of the best hospices in Dallas and she spent her last two months on earth comfortable and well cared for. Her daughter told me on the day of her death (I was there at her bedside that day) that our choice allowed Ann to live two months longer than she would have otherwise. I believe that was right.

I was amazed that she lived that long, having had little or nothing to eat that whole two months. But as her daughter from Dallas told me again and again, Mom’s a scrapper. She’s going to go on her own schedule, not on anybody else’s schedule. It also gave the rest of the family time to get to Dallas and to say their goodbyes. Even her husband came down to say goodbye.

Sometimes, and for some people maybe the peace that dementia brings to their lives isn’t always a totally bad thing. Yes, it’s terrible for the rest of us, but at least in this case, her daughter’s and I agree, it was a blessing to her.

I miss her greatly. It took two weeks for me to be able to write this.

What can I say? I like ‘em “feisty”. Via con Dios, my friend.


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If you are seeking advice, help or insight you can read Carole Larkin at ThirdAge Services

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