Jan 2, 2013

Home for the Holdiays? Hmmmm

Is the trip for the patient to have a good time, or is the visit to release a feeling of guilt from the family?

By Ann Romick
Alzheimer's Reading Room

Home for the Holdiays?
Nothing sounds better. Or does it?

Years ago – way before Ken had Alzheimer’s – and his mom and dad first showed signs of being “odd” we insisted they come to our home for Christmas.

This was before the scores of brain disorders were gathered together and placed under the Dementia Umbrella, when older people who behaved in a peculiar manner were defined as being a bit senile, or they were going through a second childhood.

A time when my husband and I believed we knew what was best for his aging parents.

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As a middle-aged couple with married offspring and some still at home the Holidays meant that everyone, who could, came to our house to be together celebrating not only the birth of Jesus Christ, but to renew our love and devotion to one another by gathering en mass under one roof: a new baby, a few children, their parents, our teens and young adults.

What could possibly make it better: Having Grandma and Grandpa join the fun?

Reluctantly, Ken’s dad explained that he no longer felt like driving the distance. “Then we’ll come and get you,” Ken insisted. “We just couldn’t do Christmas without you and mom.”

Within an hour Ken was back: Rose and Nick in tow. They smiled, took a seat, we fixed each one a plate of snacks and the party continued. Soon Nick approached me asking, “Can you take me home.” “But Dad, you just got here,” I replied.

Rose didn’t touch her snacks and worried all evening about her purse adding equal worry about the possibility of lost keys. Nick continued circling the room asking anyone and everyone if they could take him home.

Finally, I said to Ken, “This was a mistake. They want their peace and quiet, please take them home.” He did.

When older people kindly refuse an invitation, take their word for it. It isn’t that they don’t love family; they just want that experience in small doses at their convenience.

I hadn’t thought about our experience with Rose and Nick for many years until Crizaldo came to work the day after Christmas. When he isn’t working the two days caring for Ken he works in a care facility as a full-time caregiver. The holiday had been a long, hard day for him. “People shouldn’t take their loved ones home for a holiday,” he protested, “unless they plan to care for and watch the patient.”

Further explaining he said that when the family member leaves with his loved one for the day, we give them instructions about medication which needs to be given at certain hours, and we can’t emphasize enough the importance that the patient has no alcohol.

“Many come back to the facility angry and intoxicated, he continued. What makes it even worse is that the alcohol has been mixed with the patient’s medications, and they are combative and/or violent.”

I was shocked asking, “You mean they disregard your instructions?”

Crizaldo explained that the drink usually isn’t given intentionally, but guests are careless. Someone puts a beverage down on a table, and the patient picks it up and drinks it. We have no idea how much alcohol has been consumed. Often the mixture causes the patient to have an extreme personality change causing the family to return their loved one as soon as problems begin. That return is very difficult for us.

“The family has good intentions, although I wonder about their motives: Is the trip for the patient to have a good time, or is the visit to release a feeling of guilt from the family?

Whatever the reason, they don’t watch their loved one as they should. Patients are like little children, and when they bring them back to the facility, intoxicated, they complain that the patient has ruined their party by being drunk and out-of-control.”

When our family came for Christmas Eve this year we gathered in the living room while someone stayed with Ken in the family room, which is now his room containing everything he needs or could want for his comfort.

Once the children were settled, greetings exchanged and the noisy part of company had subsided we brought Ken in to join the group. We talked, caught up on the latest news, sang a few Christmas songs, Sean read the scriptures from Luke, and then we opened presents.

After that most everyone drifted away to daughter Julie’s house for the rest of the evening. Ken smiled having experienced a lovely, but brief holiday and then we put him in bed.

With older people and folks with Alzheimer’s there can, at times, be too much of a good thing, especially when they are taken away from what is familiar. Sometimes, even good things are better when there is just enough.

Ann Romick is a writer and caregiver. She also writes on the Alzheimer's 24-7 blog. Ann cares for her husband Ken who was diagnosed with Alzheimer’s in 2004, and who is now in the mid-severe stage. Ken's mother, father, and older sister all lived with Alzheimer's.

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