Getting Away From It All

We took a trip last week to my family reunion in Kentucky. I always look forward to that trip. The smell of the true southern cooking and the southern accents of welcoming relatives create a magnet effect drawing me and all other Deaton kinfolk toward the hills each August. I’d change nothing about spending time with my Dad and siblings as we share adventures at the lodge, hike the hills, enjoy the food and swim the pools.

A day together begins with early morning coffee on balconies and late night catching up parties in one another’s rooms. Inevitably we venture out- all seven cars twisting and whirling their way through hollows and around hills. It is our journey through time. Our trip back to the old homestead and surrounding points of interest has been a treasured tradition since I can remember. My dad and his siblings point out nostalgic places and tell stories of growing up in the Appalachians’. We stand by the graves of our grandparents and great aunts and uncles and others we might not exactly remember. It’s all part of what draws us there. It’s why we come- if we can.

If I can. Until the last I was never for sure that I could- that I would. But I did- we did. It was great to get away- a much needed getaway. I tried not to think too much about what was happening at home, not about Susan or anything else. I just wanted to enjoy the moment I was in, the freedom, the scenery, the activity and my family. I did!

But getting away isn’t so easy anymore. Who would care for Susan? We have learned that respite care is a touchy thing, much to my dismay. If there is no family available or able to care for a loved one than hiring one out becomes necessary. That is not as easy as it might seem. And wow, the cost is outrageous! Suppose there was no money for respite care? Would the caregiver not get any much needed time away?

My main concern in leaving Susan this time was that whoever cared for her needed to be patient and understanding with her while remaining firm and diligent. Can you hire that out? Obviously, Susan needs closer monitoring as time goes on and her disease progresses. She is likely to try to cook something and leave it forgotten on the stove or in the microwave (as she has proved three times this month). She could slip out the front door and perhaps wander off or be locked out unnoticed. She could harm herself in so many ways that I couldn’t even imagine them all. Recently, she popped a rose rock into her mouth for a between meal snack. Luckily, Kyle saw her sneak it into her mouth and made her spit it out before she broke the rest of her dentures. On another occasion she snacked on dog treats. There’s no telling what she could get into.

Jeff almost stayed behind on the trip because of the difficulty finding someone to care for his mother. I felt sad that he would take the time off of work and not go anywhere. In the end, my son and his wife took on the challenge of caring for Susan. They prepared meals and ensured Susan ate, assisted nurses and aids in their care of Susan, dressed and undressed, played night time monitors, kept her on her medication schedule, cleaned up after and washed clothes for Susan (not to mention their own selves)….. Frankly, they were glad to see us return and were admittedly ready for their own getaway!

Thanks guys.

Could you care for an Alzheimer's person?

I have been asked a seemingly simple question. Is it hard taking care of an Alzheimer’s loved one at home? My answer is this: Do you have the wisdom of Solomon, the patience of Job and the heart of Mother Theresa? You really could use all three. But then again, I don’t. Honestly, I sometimes make mistakes, I sometimes feel sorry for myself, and I often get impatient with Susan and her repetitive antics. I cry, we laugh, and as we go- I grow.

I never wanted to be tested this way; it’s just seriously not much fun. Hidden among the trials however, can be found tender human moments that I could not experience in any other way. It involves that total giving of oneself to something that has not the promise of repaid dividends’.

But I lie, there is much given back to me for my bothers. There is that inward knowledge that I did what I could for someone else, that I was an important participant in another’s well being, that her life was better because I was in it (even if I am never once told so.) It is the self-awareness that I didn’t give up even when I often wanted to. I am relearning that all my worldly possessions are just worldly possessions- things that will mean nothing at all to me when my life on earth is said and done. I take joy in knowing that she is safe with me and that I am the one who tells her that I love her when there is no one else to do so. The things I might have spent my days, my years, my life about seem dwarfed and impersonal in comparison with caring for a person so vulnerable, so childlike.

And if that all seems like a bunch of hogwash, let’s look at the lighter side. My artificial plants are always watered! My house is continually secured: windows closed, curtains drawn, shades shut and doors locked (often with me outside). There is always something to do: like, sorting the dirty dishes from the clean one, mopping up messes, scrubbing missed toilet areas, finding my latest ‘missing in action’ kitchen utensils. Searching for keys (a regular around here). Explaining bizarre behaviors to enraged strangers. And, as when my children were small, I am back to picking clothes for others to wear (now, if she would just let me help her with that make-up).

Oh, let me not forget the unexpected benefits. I will forever after be grateful for any length of uninterrupted sleep that I can find. Having a quiet morning with my feet propped while I’m sipping a hot coffee feels like a romantic getaway in a mountain resort. An oasis can be something as unexpected as my own bedroom with my door carefully closed, and me locked inside. Vacations now take on new purpose with simpler expectations and less activity involved. Regular days become games of ‘Guess how old I am today’ or ‘Find the hidden purse’. I have learned to laugh when perhaps I should cry and cry when probably I should laugh. But seriously, if you’re in it for real- this is!

Susan's New Walker

This whole idea of a walker seemed like a pretty good one in theory. I mean, Susan’s walking abilities were definitely impaired and she had fallen several times in the past month. In fact, we have found her on the floor twice just in the past week. So having an assist when she walked only seemed smart. But this smart idea has turned into a real thorn in the sides of everyone living under our roof, including Susan’s.

She has only had her “luxury” walker for three days now and I am ready to roll it and her out the front door. I know I shouldn’t say such things, but I know!- you try it! It all started as Susan’s skills obviously declined, causing her physical therapist to recommend a walker to keep her safe.

Not surprisingly, Susan insisted on having the best, the nicest one they could get her. Of course that meant more money. But more money never stopped Susan and the physical therapist must have caught a glimpse of that in their conversation about the walker. She advised me afterward that she thought the higher end model would work best for Susan because she was more likely to use it if she thought it was nice. I agreed.

No time was wasted and the walker arrived earlier this week. Susan liked it! It was red with a black leather seat and a basket to boot! Her own walker! We all sighed with relief because none of us felt comfortable with her tilted walking skills and off balanced grabbing onto things as she dragged that left foot around the house. This walker would likely prevent her from falling again and for that reason we all breathed a sigh of relief.

The physical therapist gave Susan a thorough lesson in using her walker, which is about as simple as it gets; just hold onto it and walk. Everything seemed under control until the therapist left and Susan attempted it on her own. What a relief, we all thought. And for Susan, how fun, after all it was a shiny new novelty to play with!


My first clue that this walker concept was going to be a problem was when I looked at the entry from Susan’s hallway and saw Susan sitting on the leather seat of her walker (which was facing backwards) with her hands clutching the hand brakes. She was looking at us in dismay as she whined about how this cheap crap wasn’t even working. It took my brain about two seconds to link up to hers and realize what she was thinking. “Mom, it is a walker- not a rider! You have to stand up and walk. It won’t take you anywhere!” “Why won’t it go? What am I doing wrong? Well, how
stupid is that if it doesn’t even work.” She protested.

In no time this shiny new thing became her enemy and all she wanted was a good place to park it up. This stirred up sour memories, of all the possessions Susan hoarded through the years. “This walker is for using, not parking!” I exclaimed. Funny thing is, she doesn’t want to park it in her room or in her way; she wants to park it in the hall blocking other people’s way to their rooms. She doesn’t care if they cannot exit in an emergency, or that they have to walk around it. No, as long as she can own it, see it, but never have to use it, she will be rather happy and comfortable. I see her old self in there somewhere.


Without doubt, everyone here is exhausted with explaining this whole walker concept to Susan for three days. She walks while dragging it behind her. She uses it as a chair in the kitchen. She awaits the power to charge on the motor so it will ride her into the lap of luxury. She sneaks around without it while making excuses that it is a pain in the neck and she will use it tomorrow. That one is wasted on me since I learned long ago that with Susan tomorrow never comes.

All of us are now practically qualified in walker therapy. Need help? Call us. I tried to relate her walker to something she could understand- a shopping cart. “When you go into Sam’s Club do you walk with your arms behind you dragging your cart where you cannot see what is in it?” I quizzed her. “At the Commissary does the grocery cart drive you around or do you have to push it along?” and “ Susan, this walker is foot powered- one foot in front of the other.” “Oh yeah?” She ponders the thought. But nothing seems to be working.

I fear that the physical therapist’s prediction yesterday that Susan likely may never learn how to use this simple contraption might be true. Especially since I found her limping around our house at one o’clock this morning. She had the whole house lit up like a Christmas tree on Christmas Eve and she was looking for her mother. No walker, just her and her bravado. Suppose she falls on one of her escapades and it is hours before we discover her? I know of no way to prevent it, although we are all desperately trying around here.