Archive for the ‘Care Facilities’ Category

“Have you thought about looking into a care facility for Ken?” asked my neighbor.  “Of course,” I answered, closing the issue and moving on to another subject.  What I wanted to say was, “Having to place my husband in a full-care facility hangs over my head  like an enormous lead weight every single day of my life, and I wait constantly for it to drop.”  Because we are friends, I didn’t feel she had overstepped her bounds by asking me, after all we have known one another since our children were young.  But I did feel the intrusion when she called a family member and told them Ken belonged in a home.   This being my fourth trip (and the most difficult)  down Lost Memory Lane, there is one thing I know for certain: no matter how demented their state of mind, people with AD and other dementia-related illnesses are happiest in their own home, surrounded by loved ones, and when and if the time comes for placement, the decision will be made by family, doctors and the guiding hand of clergy.   My most fervent prayer is that the Lord will call him home before I have to make that placement.  Keeping Ken with me for as long as possible is my goal.

If  “as long as possible” sounds vague, it’s probably because it is.  I have certain established criteria which will help me and our family reach that awful decision:  if Ken becomes violent, if he can no longer care for his personal needs, or if he becomes a danger to himself or others.  Those remain uppermost in my mind, but I know other problems may arise of which I am presently unaware, and I will cross those bridges if and when I come to them.  I also know removing him from his home will be the most difficult thing I will ever do.  “But you would have so much more freedom,” people have said.  “To do what?” I ask.  Admittedly, caring for any loved one who is terminally ill is difficult, wrenching, exhausting and depressing, but would it be less painful to visit him or her in a care facility only to have them weep at your leaving and beg to go with you.  There are no easy answers and there is no easy decision, so it is best for those who mean so well not to become part of the problem.

I find the further down the AD staircase Ken travels, the more changes take place, changes in his ability to understand, his awareness, comprehension, personal care, his physical abilities and even his willingness to cooperate, which I know is normal for the disease.  All of these changes and more will be factors in determining when and if he has to placed in a home.   However, the fascinating part of this insane journey (if I can  use the word fascinating), at least with Ken, is this fact:  his trips yoyo up and down.  There are days when his descent seems endless; speaking with little sentence structure, groping for needed words, unable to take simple directions, more anger and frustration than usual, difficulty in making the simplest of decisions and general annoyance with me the majority of time.   After a few days of this sudden and bazaar behavior, I tell myself, “Tomorrow, I’ll call the family, and we’ll talk.”  But when tomorrow comes, he’s better.

The medical community has said that once memory is gone, there is no recovery, but I wonder about that.  As I have watched him regress over the past six years, the decline is very definitely dramatic.  There is no comparing the Ken of 2003 and the Ken now.  I’ve watched and listened to him drop through the years, lose memories and his age year after year: forgetting his career, me, his children, and then dwelling for a time in the Navy, dropping down again to a time when he insisted he needed his pajamas before he could get ready for bed.  During those latter times I call him “Buddy,” the nickname his parents gave him.  Furthermore, when he’s Buddy (who is about 12)  he wonders why he hasn’t seen his mother and father, and asks about his sister, Loretta.   Loretta, I tell him, has her own home, but telling him his parents are deceased is unacceptable to him, so I tell Buddy they are on vacation.  Being just a boy Buddy tells me he is not married, never has been married, has no children — only a sister and his mother and father.  Another personality in the mix and to whom I refer is Mr. Hyde, who also owns our house, but is older and married, but not to me.

Other times, from out of nowhere, Ken will look at me and wonder, “Are you my wife?”  I assure him that I am adding, “Your wife needs a hug.”  Eagerly he obliges, and in our embrace we fit into each other’s arms as if these wretched years have never been.  Feeling the comfort he remarks, “Oh, this feels so good,” and then he rubs my back as he always did before letting me go.  Ken invites me to sit with him on the couch so we can watch TV together, asking, “Are you okay?” and he reaches for my hand.  My husband remains for several minutes before that mysterious fog wipes away the memory and he becomes one of the other personalities, dismissing me as some annoying intruder.  I’m grateful for the interlude.

Physically, Ken is in very good condition, a little on the skinny side.   How long the two of us will ride this crazy roller coaster called Alzheimer’s is an unknown factor, but we will continue riding it together until — and if — there comes a time for our ride to stop.  Meanwhile, I am the one, with my chosen council to counsel, who will determine when a change needs to be made.

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