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A lonely path through a darkening land

This blog is a chronicle of my father’s path through that dark land of gradual loss and dimming light. But there is much more to this story than sadness, though there is plenty of that.  It is mostly a story of the profound depth of human feeling and the unbreakable bonds formed when facing shared challenges with the people you care about. I hope you will find that reading this chronicle is worthy of the time you spend.  After all, may I remind you, time is short for all of us.

We will begin soon.

Note: This post is sticky. Following, the most recent is first.

Evan M.

Dementia Village in Netherlands

Here’s a new idea for community care. Definitely worth a read. Could be a great benefit to many.

http://www.cnn.com/2013/07/11/world/europe/wus-holland-dementia-village/index.html?hpt=hp_c3

Picking up the torch

My father passed away on March 5. I am grateful for the bond we developed over the last 5 years as I cared for him. The end was sad, perhaps harder than it should have been.  I wish I had done more for him. More on his passing another time.

Now the focus has shifted to Mom. I had hoped that after Dad’s passing there would be a period of relative calm, but in an abrupt shift of circumstances at the end of May Mom suffered a sudden complete heart block while at home and was rushed by ambulance to the hospital ER. She received a pacemaker shortly thereafter and returned home after a week.

Her short term memory has dropped off a cliff since her hospitalization. Her energy is very low and her mood has become irritable and oppositional. She has been experiencing extreme restlessness after bedtime. In short, she seems to have lept past the threshold to Alzheimer’s. She started Resperidal a couple of nights ago and that seems to have helped calm her a bit, though she is more agitated tonight than last night. I hope she’ll get some relief and feel better soon.

In any case, I feel the need to record some of our experiences here, for my own sake.

More later.

 

Never let go

Several years ago, at the start of the mid-stage of Dad’s illness, he was talking with me a bit after I had gotten him into bed. His thoughts were becoming confused but he still showed some insight into his developing problems. While I was still at the side of his bed, he sighed and looked at me.

With anxiety and bewilderment, he said, ‘I really don’t know what has happened to me.”  It was both a confession and a plea for help. He could feel that something about his perception of the world was getting beyond the reach of his cognitive abilities.

And then he added,”Or to you for that matter.”

I was a bit shocked by his insight, the absence of any veil or artifice between the two of us. I didn’t know what to say. I guessed he was puzzled by why I was around so much, a big change from many years of my brief hit-and-run visits home. His message was heartbreaking; I don’t know if I had ever seen him more vulnerable. There was a tone of desperation in his voice, a plea for an explanation that eluded the remnants of his reason.

“Things will be okay Dad, we’ll get through it, you don’t need to worry.”

There is a Tom Waits song, I’m not sure of the title, but I think it is Never Let Go. In any case, the refrain is “I’ll never let go of your hand.” It popped into my mind at that moment. Dad was reaching out to me, perhaps the last time in our lives that he could reach out.

He held his hand out to me, and I reached out to him,  held his hand in a firm, hopefully reassuring grasp.

Dad, you may have let go of my hand that night, but I have never let go of yours, even if you never know it.

 

Mom

Mom’s tests were negative, so that is a cause for relief. Nevertheless, she is quite miserable and debilitated by a variety of symptoms, mostly related to osteoporosis. She is spending large portions of some days in bed or napping on the sofa, trying to avoid the nagging discomforts. Her mood is depressed and irritable, and lapses of memory are more frequent.

I am hoping she is not developing the aggression and meanness of some Alzheimer’s cases. Her gratitude has often kept me going through the difficult times.  Without that, and instead, constant irascibility, I really can’t imagine how hard life could become for me here. I hope her demeanor will improve if we can remedy some of her physical maladies. This is a big deal.

Remember to go forward

Glad to report that Dad has been doing pretty well. No recurrence of the odd “episodes.” I’m still at a loss as to their cause. I’ve reduced his salt intake and that may have helped his heart a bit. There have been no signs of congestive heart failure or pneumonia since he was released from the hospital. Overall, he is pretty stable and his mood has been fairly good.

Yesterday, after I had gotten him settled and comfortable in his recliner for an afternoon nap, he looked at me and said, “Thank you sweetheart.” He has grown more silent over the last several months, so I was gladdened  to hear him speak so clearly and directly, and with genuine warmth. Of course I gave him a big hug and told him how proud of him I am.

But, Mom’s problems are quickly increasing. She had a CAT scan of her abdomen last week, and we see her Dr. Monday for the results. Fingers crossed. Her mood is depressed and the burden of worsening osteoporosis is making her a bit irritable. Can’t blame her.

Pressures on me are increasing–after 4 years without an income my finances are rather bruised. Need to find a way to continue helping Mom and Dad while avoiding penury. Spending 70 hours a week helping Dad is pretty tough. I have to remind myself to keep going forward.

 

Feeding

Feeding Dad dominates every day. It is the single most time-consuming activity in my life, except sleep–well, may be even including sleep. His hospitalizations have caused me to focus on preventing aspiration pneumonia to the extent I can. So far, we’ve been doing pretty well.

Sometimes I worry that I am being overly cautious–he enjoys eating, especially desserts, and I hate depriving him of the different textures he knows and loves. But, even so, I puree just about everything and always use a thickening agent for liquids.

I recall an incident from several months ago. I was giving him a drink of plain tea from a glass or  a spoon–I don’t remember which. He got a bit strangled by an attempted swallow, and though he never seemed in danger, it was clear he was scared by it (as was I) and felt rather serious discomfort–coughing and trying to talk but gurgling–it was painful to watch and try to comfort him as he attempted to clear his throat and right himself. After some time, he did.

Once all that had passed, I gave him several minutes of feeling  normal and calm, then offered him another sip.

“Daddy,” he said,”I can’t do that anymore.”

Nothing could have been more clear.

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