The Long Good-Bye

My mother, Ethel, left this world on Octo­ber 13, 2005, but she left her fam­ily long before that. She left us grad­u­ally, slowly inch­ing fur­ther and fur­ther away until she finally retreated into her own lit­tle uni­verse — a lit­tle cor­ner of her own mind where we could no longer con­nect or inter­act with her. And even­tu­ally, I did some­thing I never would have believed I could do: I wished that she would die.

For the last two years and three months of her life, my sis­ter and I vis­ited her every week. We always went together because hav­ing a com­pan­ion made it a bit eas­ier. We had each other to talk to about things as we sat at her bed­side. Most of the time, though, we didn’t talk when it came time to leave. We would drive home in silence, both think­ing and feel­ing the same things, none of which really needed to be ver­bal­ized because we had said every­thing there was to say on numer­ous pre­vi­ous occasions.

After every visit, I wished and prayed that it would be the last. Then I would feel guilty for wish­ing that, even though I knew that my mother was liv­ing out her worst night­mare on a daily basis and I was pow­er­less to help her escape it. Think­ing about it that way, I would reaf­firm my hope for her death to come about, and so the cycle repeated itself over and over.

When I came home fol­low­ing each visit, I would tell myself that I just needed a few min­utes to regroup as I strode toward my bed­room (which used to be my par­ents’ bed­room and then, after my father’s death, her bed­room). Set­tling down in front of the t.v., I would wake up two or three hours later with the real­iza­tion that my visit with her had once again worn me out to the point that I had col­lapsed. Big­Bob and the kids learned to just leave me alone because “Mom just got back from vis­it­ing Nana” and they knew rest was what I needed.

The kids vis­ited her reg­u­larly when she lived in this house and for the year that she resided in an assisted liv­ing facil­ity. At that point, she was still ambu­la­tory and con­ver­sant. Although her mem­ory was fad­ing and she was def­i­nitely becom­ing more frail, she could walk to the din­ing room for her meals, par­tic­i­pate in activ­i­ties, and visit with the other res­i­dents. Every Sun­day, the boys and I took her out for lunch. She enjoyed get­ting out and eat­ing food that was dif­fer­ent than that served at the facil­ity. It was the boys’ job to help her in and out of the car. They each took one of her arms, walk­ing slowly with her to make sure that if she started to lose her foot­ing, they could intervene.

“Most of all the other beau­ti­ful things in life come by twos and threes by dozens and hun­dreds. Plenty of roses, stars, sun­sets, rain­bows, broth­ers, and sis­ters, aunts and cousins, but only one mother in the whole world.“
~ Kate Dou­glas Wiggin ~

While she was still liv­ing here in her own home, her eye­sight wors­ened, due to mac­u­lar degen­er­a­tion, to the point that she could not see well enough to dial the phone, so we pro­grammed the num­bers for her and she mem­o­rized the asso­ci­ated prompt. We thought, when she moved to assisted liv­ing, that tak­ing the same phone with the same pro­grammed num­bers would mean she would still be able to make calls. Unfor­tu­nately, the act of mov­ing the phone and change in her sur­round­ings appar­ently caused her to lose the abil­ity to use it. So she was never again able to call us. I remem­ber dis­tinctly the day that real­iza­tion really “hit” me. I was at the office and I called her. When I hung up, I noted how long it had been since she had called me and then had to come to grips with the fact that I would never again pick up my phone and hear her voice at the other end.

The loss of sim­ple lit­tle things that we take for granted are fre­quently the most dev­as­tat­ing side effect of goodbyes.

Some­times, we had to laugh or we would never have been able to cope. For instance, we went to the assisted liv­ing facil­ity for her eight-sixth birth­day cel­e­bra­tion. It was fun! They played records and a lot of folks even danced. At that junc­ture, she was habit­u­ally reliv­ing my father’s death and how hard it had been to say good­bye to him. It was a strange phe­nom­e­non … she talked inces­santly about it as though it had just hap­pened, say­ing, “I lost my hus­band, you know.”

On this par­tic­u­lar day, she was sit­ting between my sis­ter and I. She turned to me and said, “I lost my hus­band and it was so ter­ri­ble.” I responded, “I know, Mother. He was our father.” With­out miss­ing a beat, she exclaimed rather loudly, “No! He wasn’t your father!” Sev­eral peo­ple, includ­ing our friends who had accom­pa­nied us for the party, heard her and burst out laugh­ing. I said, “Mom, is there some­thing you need to tell me? Is there a fam­ily secret you want to reveal after all these years?” and that made them laugh more. What else could we do?

Another time, she pointed to their fifti­eth wed­ding anniver­sary photo on her dresser and said, “That’s the guy I was dat­ing!” Again, my sis­ter and I said, “Yes, Mom, you mar­ried him. He was our father.” She spun around to my sis­ter and said emphat­i­cally, “We never had any chil­dren!” So we just changed the sub­ject. Folks with demen­tia or Alzheimer’s dis­ease say and do all sorts of inap­pro­pri­ate things. You learn to be ready for the unex­pected and take what­ever they say in stride.

When she could no longer walk and quit eat­ing, we had to place her in a facil­ity that would pro­vide total care. My whole life she had said, “I hate those places. Peo­ple just sit there wait­ing to die. I never, ever want to end up in one of those places.” So you can imag­ine how much like Bene­dict Arnold I felt sit­ting in the office sign­ing the admis­sion forms.

What choice did we have? Nei­ther my sis­ter nor I had the train­ing, equip­ment or finan­cial resources to quit our jobs and take care of her in one of our homes. She would never have wanted that, any­way. She had des­per­ately feared becom­ing “a bur­den” in her wan­ing years and would be furi­ous at the thought of dis­rupt­ing our lives or careers. After all, she was the one who wanted a col­lege edu­ca­tion more than any­thing in life, but it eluded her because she grad­u­ated from high school in 1934 at the height of the Great Depres­sion. Thus, she instilled in us the notion that a fail­ure to com­plete our edu­ca­tion was a life failure.

I reluc­tantly got her set­tled into what would be her final residence.

For awhile, she still remem­bered us and the boys, so they vis­ited, too. But I always gave them the choice. Both came to the con­clu­sion, in their own time, that they no longer wanted to see her in her debil­i­tated state. Both expressed a desire to live with their mem­o­ries of her in bet­ter days and I hon­ored their request, telling them, “That’s fine because that’s the way Nana would want you to think of her.” My sis­ter and I could not make that choice, though. We had to con­tinue vis­it­ing her long after she had no idea who we were.

When she finally died, I didn’t have a lot of tears to shed. When I wrote my ini­tial post four months later, I noted “that made me feel guilty, too. And still does.”

A year passed and those tears never came … I have now resigned myself to the fact that they never will.

A long, slow death from Alzheimer’s or demen­tia is among the cru­elest for the patient’s fam­ily mem­bers. Ronald Rea­gan, in his 1994 let­ter announc­ing his diag­no­sis, acknowl­edged what lay ahead for his beloved Nancy, who called it “the long goodbye.”

The patient doesn’t suf­fer, for the most part. My mother’s physi­cian repeat­edly assured us that she lost the men­tal capac­ity to appre­ci­ate her cir­cum­stances. She was in a men­tal time warp where she and her two older broth­ers (pic­tured here with her when she was five years old … see a resem­blance in my pro­file photo taken when I was four?) were walk­ing to Sun­day School across the South Dakota prairie. Once, when my sis­ter and I arrived to visit, she told us that her mother, who died on April 29, 1971, had just vis­ited her. And for quite awhile, after she fin­ished reliv­ing his death, she talked about our father as though they were young. She’d tell us that he had just left and would be back soon. My sis­ter and I would just look at each other and say, “Don’t we wish?”

She talked inces­santly, but we could not piece the words together into coher­ent form and, even if we tried, by the time we responded to her she had moved on to another jum­bled thought.

For a long time, after she could no longer rec­og­nize us and say our names with­out prompt­ing, she would get very excited when we told her who we were. She’d look at me with a brief flash of recog­ni­tion, say­ing, “Are you Janie?” I’d remind her that I was her daugh­ter, but within a few sec­onds she would for­get again.

Intel­lec­tu­ally, it is hard to become too dis­traught about the death of a per­son who has spent nearly 89 years on this planet, after all. It isn’t the same as when a young child dies trag­i­cally or a middle-aged per­son is diag­nosed with a ter­ri­ble form of can­cer and dies quickly, leav­ing behind chil­dren and a spouse. After all, this is the way the cycle is sup­posed to work, right? We are sup­posed to bury our par­ents and, in turn, our chil­dren are sup­posed to care for us in our final days, and so on and so on …

So I guess that I really shouldn’t have been sur­prised to find that, when she died peace­fully after hear­ing the Scrip­tures and words of com­fort, I didn’t have a lot of mourn­ing left to do. She lived a long, pur­pose­ful, mean­ing­ful life doing a lot of things that brought joy to her and her fam­ily. She lived inde­pen­dently until she was 85 and a half years old.

I was happy when she was finally released from the steady debil­i­ta­tion that punc­tu­ated her last cou­ple of years. I don’t lose any sleep at night won­der­ing where she is now. She is reunited with our father and the rest of her fam­ily. I’ll see them all again.

What I came to real­ize is that it truly was a “long good­bye.” By Octo­ber 13, 2005, the day her shrunken lit­tle body finally sur­ren­dered and fol­lowed her mind into eter­nity, there just wasn’t any mourn­ing left to do because I had grieved her leav­ing in the same way that she left, i.e., a lit­tle bit at a time, slowly, grad­u­ally, inch by inch.

It was a very dif­fer­ent expe­ri­ence than los­ing my father, who was sick for many years, but had long peri­ods of good health between bouts. And he never looked or acted his age, never became senile at all, remain­ing per­fectly lucid until the very moment he died as I stood at his bed­side talk­ing to and reas­sur­ing him.

And that’s why I felt so dis­con­nected and guilty about it … won­der­ing when my mother’s death was going to “hit” me, so that I could go through those five stages of grief that Eliz­a­beth Kubler-Ross edu­cated us about.

Finally, I under­stood that I went through those stages at such a slow pace, so grad­u­ally, that I didn’t even real­ize I was doing it. I just put one foot in front of the other, deal­ing with the sit­u­a­tion as best I could. In real­ity, I was say­ing my good­byes to my mother but didn’t com­pre­hend that I was doing it. There was no final emo­tional cathar­sis. Peggy Lee asked musi­cally, “Is that all there is?” and the psy­cho­log­i­cally dis­con­cert­ing answer is “yes.” That was it. That’s how it works.

Per­haps that’s the ulti­mate “punch in the gut” that Alzheimer’s deliv­ers to the patient’s fam­ily mem­bers: Not only does it rob you of your loved one, it also robs you of the chance to grieve in what soci­ety gen­er­ally per­ceives as a nor­mal, healthy man­ner. It robs you of the chance to say “good­bye” in the way we have come to expect under other circumstances.

Instead, you expe­ri­ence both the loss of your loved one and your grief about that … in slow motion.

On this Mother’s Day, if you are lucky enough to still have your mother with you, go call or visit her. Take her some flow­ers. Take her to lunch. Enjoy her com­pany and con­ver­sa­tion while you can. Give her a hug and a kiss. Thank her for all she’s done for you over the years because “[a] mother is she who can take the place of all oth­ers but whose place no one else can take.”

Inspired by the Sun­day Scrib­blings Prompt: Sec­ond Chance which pro­vided me with a sec­ond chance to share this arti­cle in honor of Mother’s Day.
Included in: Car­ni­val of Fam­ily Life, Mother’s Day Edi­tion at Be a Good Dad.

Tech­no­rati Tags: Alzheimer’s, Car­ni­val of Fam­ily Life, Ezine Arti­cles Expert, Mother’s Day, Sun­day Scrib­blings, The Spin Cycle

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