Living with a disappearing person

alsheimers Statistics tell us that more than 35 million people are afflicted with Alzheimers disease.  Practically every family is touched by this cruel illness that robs people of their loved ones long before death takes them away.

My own family is dealing with Alzheimers on several fronts. My cousin, Edna, from Maui and I spent several days together last week discussing how she is coping with her mother’s illness. Edna left her career and her beloved Memphis last year to return to the islands to care for her mother, my aunt.

Suddenly, I am faced with similar circumstances and Edna’s philosophy on dealing with the disease was invaluable and endearing.  It has given me hope and an unique insight on the healthiest, least stressful means of treating an afflicted loved one with dignity, patience and love.

“It all comes down to openness, honesty, and LOTS of humor!,” she exclaimed.  “Rather than be secretive and hide the truth of her condition we decided to be open with all. This has resulted in the delightful display of watching Mom accept her departing memory with laughter and love.”

“It’s both amazing and infuriating to see how lots of folks react to our treatment of Mom with the disease–they appear disgusted as if we are harming her in some way because we don’t feel shame. Such is the horror derived out of fear which sustains the engine of denial fueling the inability to embrace acceptance,” she explained.  “This is not our Path to follow–our Journey is one of deepest compassion. Thus we simply live and let live.”

“Others’ fears are their own lessons to learn in this lifetime. We don’t have time to fret over their drivel and drool–time is of the essence, especially when one is living with Alzheimer’s (as you know all too well). This is certainly not an easy road to travel, I have had my share of battles I’ve waged on behalf of Mom. There have been many who have denigrated my name and questioned my choices made. I understand their concerns, but again–I have no time to devote to their fears.”

She concluded: “I have grieved the loss of my Mother as I had always known her–the woman who was my friend and confidante has left. We can no longer communicate with stimulating, meaningful dialogue. Now I care for the Mother who has cared for me, making sure that she receives the best of love and nurturance. She is all I have left of who she once was. There are fleeting moments of memory–but they slip away almost as quickly as they dart in. This is an insidious disease, to say the least. There is anger and frustration, but where do such emotions get placed? The confusion of the disease can impact loved ones’ emotions as well–they can be misplaced just as objects are.

I think Edna is one of the wisest people I know, and our time of sharing was uplifting which helped calm my own fears of the disease.Perhaps her thought s might help someone else out there.

3 thoughts on “Living with a disappearing person

  1. When my Dad had his stroke it took his mind too. Sometimes he was living in the present other times he was fighting in WW11. No matter where he was, we were there with him. I actually got to know a lot more about my Dad because then I listened and enjoyed him more.

    Until you go through something like this you just can’t understand. You have to go in their world and grasp every second. We have some funny stories to remember him by now and oh how I miss him and Mother but I know I stayed in their world and grew to know how to have a better understand and love for people.

  2. Carolyn, thank you. I am learning this and the power of living in the moment – that’s really all we have.
    . Are you coming to the reunion of the Torguays? We must get together.

  3. Carolyn and Emily,

    I know just what Carolyn is talking about. I do the same thing with my mother. The dementia that sometimes occurs with long term Parkinsons Disease is a bit different from some of the other dementias, but Mother can say the most charming things to her “little friends” whom she thinks are real visitors. Sometimes when it’s really quiet at night, I can clearly make out every word she says in her soft little voice — sounds like her old jolly, friendly self.

    What is most interesting is the things she chooses to tell her “new friends.
    I figure these are some of the things she thinks of as defining her — her full name, her husband’s name and often times, she’ll say that he IS a Navy pilot (must be going back to WWII). Other times, she’ll tell them where she goes to church. Guess it all depends on what she thinks her fantasy world scenario calls for at the time.

    Mother has a funny habit of saying she’s 103 years old, but it varies alot. Seldom is it anywhere near as young as her real age of 88, for some reason. In the same conversation with us, she might say something that would indicate a time frame more consistent with when she was much younger, so none of it really makes sense chronologically. She won’t mention anything about being 103 or so for the longest time, and then, all of a sudden one day, she’ll start saying that again — who knows why, but it always catches us off guard, so we can’t help but smile inside when it pops up again. She is so cute!

    We’ve been getting her up with the use of a Hoyer hydrolic lift for about three years now, but just a few weeks ago, one day while she was swinging freely in the sling in a sitting position, attached to the lift as we had her in mid-air going from bed to chair, she broke out in a big smile, and said, “Wee, this is fun!” I had really expected her to say that a long time ago, so it kind of caught me by surprise that it took her this long to think of it as fun. She must’ve been particularly alert that day.

    At any rate, I’m glad that most of her hallucinations now are not frightening — they mostly seem rather pleasant, and provide her some companionship. She always did seem to enjoy meeting new people, and making them feel welcome, so this is right up her alley.

    By the way, today I was able to replace Mother’s gastric tube myself for the first time. It’s a three year old stoma into her stomach through her skin, and it was a planned procedure, so the stoma (hole) didn’t have time to close off much, as happens when one comes out without warning.

    Sooo…now I’ve got another skill. Actually, replacing a urinary catheter takes much more coordination due to the length of the tubing and other items that must remain sterile, and I’ve done many of those over the years. I was just afraid I might meet with resistance pushing the tube in as my sister did when the stoma had gotten so much smaller when we were caught by surprise a couple of times before.

    I just can’t stand to do any activity or procedure that causes her pain — even to watch. Guess that’s why we have to have medical professionals outside the family to take care of us.

    The tube replacement she hardly awoke from her nap for, so I now know I can do that anytime it comes out, as I know it won’t hurt. She still eats some things by mouth, but just needs that tube for supplementation if we can’t get enough down her by mouth during the day when she’s sitting up.
    We soon cancelled her OT who was doing therapy on her hands and arms — it was just too much for her and us as well. We just do a little mild stretching that she tolerates pretty well, and she gets the bigger doses of botox by the neurology specialist for the muscles that work her arms and hands, and that seems to keep them from drawing up so much. We do that about every four months or so, and it works beautifully.

    The blessing part of Mother’s condition is that, the way her memory works, she doesn’t remember that her arms and legs are pretty much useless, and have been for around three years. She does have a tiny bit of ability to move a limb here and there. She can occasionally wipe her mouth or scratch her nose, etc. Sooo…memory loss isn’t always a bad thing.

    She still always seems to know my sister and I as well as my brother-in-law, so that makes us all feel good — even calls our names fairly frequently.

    We don’t get her up early, but rather, wait til early afternoon most days, so that she doesn’t tire out before the family comes home from work.

    That way, she has the more normal experience of sitting around the den with the whole family, watching sporting events, dance competitions, or games like Spin the Wheel, etc., that don’t require the ability to hear (she’s not been able to hear much of anything for years now).

    I do have to be careful that pictures of big fires or floods, or violence aren’t on the screen or she thinks those things are going on here. She thinks the talking heads, even on the sports and weather programs, are talking directly to her, and sometimes she used to think they were telling her scary or important things — I mean directly to her. That seems to have subsided a bit now, thankfully. I’ll save some of the stories about that for another epistle. Ha!


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