Daily Kos

"I've had a nice time this evening." (Alzheimers)

Thu Jan 17, 2008 at 12:21:27 PM PDT

With all the dignity and presence of a southern lady, my MIL held her self erect, looked at me and said "I've had a very nice time this evening. And dinner was lovely. And your performance, though I'm a little ashamed to admit that I can't remember exactly what you did."

"Well, thank you!" I answered. Then I helped her finish up on the commode next to her bed, and carefully laid her down for a nap.

It was 12:45 in the afternoon. She had just finished lunch consisting of a peanut butter & jelly sandwich, Pringles, and some chopped pears. Needless to say, there had been no 'performance' by me or anyone else.

* * * * * * * * * * * * * *

"I don't know how you guys manage it," said Lisa, the hospice nurse. She had just finished her examination of my MIL, and had been going over what she saw as we talked after. She'd mentioned the option to have an aide come over to sit with my MIL while we got out for a bit.

After my wife and I exchanged glances, I (or maybe it was my wife - these details start to slip away) said that we preferred to not both be gone at the same time at this point. Why? Well, because it feels like the end. We want to make sure one of us at least is here with her.

And it's not just us. Lisa commented that my MIL had never before looked so ashen, so grey. We agreed that she would come again on Monday, unless we called her sooner.

* * * * * * * * * * * * * *

Her fever spiked about 4 degrees higher than normal last night, just as my wife and the overnight aide we have in three nights a week were getting her to bed. I was washing the dishes when my wife came into the kitchen and told me, on her way to getting a Tylenol tablet for my MIL. I dried my hands and followed her back to the bedroom. We got the extra pill into her, I checked her pulse and the color of her fingernails, had her look at me to see whether she could focus or not.

She couldn't.

I wondered whether she'd make it through the night.

She could.

* * * * * * * * * * * * * *

"My mother has passed on, but Auntie has taken over for her."

"Auntie?" asked my wife.

"Yes, Auntie. She has taken over for my mom. I was waiting for my mom to come for me, but she's passed on, so Auntie has taken over . . ." a pause, uncertain look around the room. ". . . everything."

"Well, OK." My wife looked at me. We'd been waiting for this. Together, almost simultaneously we said, "MIL, if she comes for you, you can go with her. It's OK."

"It's OK?"

"Yes, when Auntie, or your mom, or your dad - when they come for you, you can leave with them."

"I can?"

"You can indeed. Until then, we're taking care of you here."

"But if they come, I can go?"

"Yes, you can."

* * * * * * * * * * * * * *

We met with the social worker for an hour or so yesterday afternoon. She is kind, intelligent, insightful. She offered a lot of suggestions for us to consider, from a respite break (which would take my MIL to a skilled nursing floor at the local hospital for five days), to advice on how to better manage the stresses we're under.

None of it was useful.

Oh, it was, in the sense that had we not considered those things, it would have been very beneficial to bring it up. And neither my wife nor I were aware of the option for the five-day respite break.

But we've managed through these things long enough that I think, honestly, we're doing about all that can reasonably be done to handle the stresses, to give ourselves (and one another) what breaks we can.

And right now we're not willing to see my MIL off to the five-day break. Not right now. If she rallies again, and seems stable, then we'll consider it. But not when things are so shaky with her health. After all we have been through, after all we have done, to let her slip away now in the care of someone else in a strange environment would be just too painful, would feel very much like we had failed to see the thing through to the end.

Neither of us wants that.

* * * * * * * * * * * * * *

As I got the safety rails and straps on the bed in place, my MIL looked up at me, concerned.

"Something wrong? Something bothering you?"

"Well, like I said, I have had a very nice time tonight."

"Yes, thank you. It is kind of you to say so."

"But I think I should be going soon. My mother and father have been on a trip, and they are looking for me."

"And when they come, you can go with them."

"But if I am sleeping," she said, that worried look on her face again, "how will I know?"

"If they come looking for you, I will be sure to tell them where you are. I promise."

And I keep my promises.

* * * * * * * * * * * * * *

Jim Downey

(Cross posted to Communion of Dreams.)

Tags: Alzheimer's, caregiving, death, fear, grief, hospice, Personal, Ethical (all tags) :: Previous Tag Versions

Permalink | 56 comments

  •  Tip jar. (52+ / 0-)

    This is another in an occasional series about being a full-time care provider for someone with Alzheimer's who is now in hospice care here at home, offered as an insight into what millions of people are trying to cope with daily.  Others in the series available in my profile or on my blog.

    Read or *listen to* my SF novel for free. (-7.13/-7.33)

    by Shadan7 on Thu Jan 17, 2008 at 12:21:45 PM PDT

  •  Thank you for this (13+ / 0-)

    my 83 y/o grandmother has it.  She is losing sequencing and judgement.  She has not eaten in 6 days and last night came to stay with me for awhile.  She had been living alone and can't do it anymore.  I am exhausted and feel like I took on another kid last night.  I will read your series as soon as I can.  I am hotlisting this.

    •  Get help. (8+ / 0-)

      Seriously - contact your local Alzheimer's Assn chapter (find them at alz.org), and get all the help and information you can.  We've been at this five years - trust me when I say you will want the help and comfort of others who understand.

      And good luck.

      Read or *listen to* my SF novel for free. (-7.13/-7.33)

      by Shadan7 on Thu Jan 17, 2008 at 12:28:04 PM PDT

      [ Parent ]

      •  We have tried our local (5+ / 0-)

        county aging and they have offered in home aides or day care.  Meals on Wheels has been available but she has been combative and acting like a 5 y/o who got her way.  We have had to change her meds and try a different tack because she was slowly killing herself.

        To date she has refused all assistance.

        •  Lie - (3+ / 0-)

          Recommended by:
          Shadan7, demkat620, GreyHawk

          Lie gently, if necessary.
          Do it lovingly and with awareness of your motives.
          But sometimes it is necessary to change the parameters of what is real and what is not when dealing with a person with advancing Alzheimer's.

          I remember when I flew with my Mom out to Wyoming - two plane changes and just me. Mom started getting antsy on the plane saying that it wasn't moving.  Well, she really wouldn't have understood that at 35,000 feet motion is not readily apparent.  So, instead, I said that there was a train stopped on the tracks in front of us and that as soon as it started moving we'd be on our way again.

          Mom said, "Oh! Well, why didn't you tell me that in the first place."  The woman sitting next to me was very kind and gave me a big smile.  The businessman in the seat in front looked back at me with the look people give to crazy people.

          Decide what is important and what is not.
          Then do the best you can to get a few key things done.
          And don't - absolutely don't beat yourself up.

          •  That was brilliant (4+ / 0-)

            Recommended by:
            Shadan7, johnnygunn, demkat620, GreyHawk

            So, instead, I said that there was a train stopped on the tracks in front of us and that as soon as it started moving we'd be on our way again.

            That was a brilliant ad lib.  It is hard to think that fast, and you handled it very well.  Congratulations.

            •  This, by the way, (3+ / 0-)

              Recommended by:
              johnnygunn, demkat620, GreyHawk

              is my good lady wife, everyone.  She knows of where she speaks.

              Read or *listen to* my SF novel for free. (-7.13/-7.33)

              by Shadan7 on Thu Jan 17, 2008 at 02:50:12 PM PDT

              [ Parent ]

            •  CB - (3+ / 0-)

              Recommended by:
              Shadan7, demkat620, GreyHawk

              I'm sure you know, quite well, that you think in new and amazing ways.  I wasn't sure what I would do when I took on the care of my Mom in her last two years - as a single guy.  The lady from senior services actually went to my minister and said that it would be "too much" for me.  Hah!

              In fact, it was a blessing as you so often share with us here.  No cakewalk, but a blessing.  It allowed me to shed some of my worst conceits - about how the world should be mine for the thinking - that intellect was the be-all and end-all of humanity.  

              It's not.  The human condition is so much more than mere intellect.  And for that I am grateful.

              My prayers are with you, your spouse, and your Mom.

  •  I have to go make dinner now. (4+ / 0-)

    Recommended by:
    cotterperson, Shadan7, GreyHawk, drchelo

    I look forward to reading and am grateful that I now know someone with a brain to pick on this.

    Thanks.

  •  More {{{{{{HUGS}}}}}} (5+ / 0-)

    Love and peace to you and your wife and MIL.  My thoughts are with you, always.  

    Join us at Bookflurries: Bookchat on Wednesday nights 8:00 PM EST

    by cfk on Thu Jan 17, 2008 at 12:29:40 PM PDT

  •  We're Behind You Several Years (10+ / 0-)

    but mom's getting to the point where she's starting to feel disoriented or lost even watching TV or sitting around the house.

    Mostly (possibly because there's a vascular element to it) her spirits have been good, she's not been agitated, fearful, combative or angry in the least, but now she's starting to go emotionally flat for periods.

    We're finishing up a few last details of her estate that require her to personally act on and then with everything in a trust we can manage for her, it'll be a matter of arranging for occasional increasing visiting nurse etc.

    We've said goodbye to most of the mom we ever knew by now. I've begun to miss her some time ago. Nobody knows how long she might live or exist; we could see where it could go for years.

    We are called to speak for the weak, for the voiceless, for victims of our nation and for those it calls enemy.... --ML King "Beyond Vietnam"

    by Gooserock on Thu Jan 17, 2008 at 12:31:48 PM PDT

  •  You have such a gentle voice ... (6+ / 0-)

    ... when writing.  Thank you for sharing this slice of your life.

    Wrapping you all in a big bubble of love.

    Lisa

    "The force is really rather strong with you, Luke" - Eddie Izzard (I miss you, La 3/5/06)

    by Bexley Lane on Thu Jan 17, 2008 at 12:34:36 PM PDT

  •  It brings back memories... (7+ / 0-)

    not always the most pleasant but memories of someone I dearly loved. She passed at 89 a few months after her husband of 65 years.

    The day before she was almost comatose. The morning of her passing, she awakened to the sun streaming in from her bedroom window and said, "What a lovely day!". She sat up for a bit then fell asleep. She passed at 10pm that night.

    The week before, the nurse had told me, "She's staying alive because she doesn't want to leave you." I spoke to her that day and let her know, I was okay with her passing. I told her I loved her and that it was okay because she could be with her husband. "He came to visit me last night, you know," she said. He laid on the bed with me and we talked."

    I miss them terribly but I'm glad she's with him now.

    Thanks for the diary and the memories.

    "What a peaceful world it would be if Barbara had aborted!"

    by DevonTexas on Thu Jan 17, 2008 at 12:35:10 PM PDT

    •  I'm glad to read these stories. (3+ / 0-)

      Recommended by:
      exNYinTX, Shadan7, GreyHawk

      My mother's aunt had always been very generous to our family.  When a recurrence of breast cancer came, I managed to visit her once when she was ill but quite alert.  The second time and last time I saw her was in the hospice.

      A little background.  My aunt's one sister had died of a major stroke in her fifties.  Her only child was a senior in high school.  His father became depressed after his wife's death although he hid it.  Several months after his wife passed, he shot and killed himself at home.  No one had seen it coming.

      I went to the hospice to say goodbye.  She was was gaunt, wasted and conscious although I had no idea how alert she was.  I told her I loved her.  I said my goodbyes.  And I told her that it was okay for her to go, that her husband and children(adults) would be taken care of and that they would be okay.  She told me she loved me, and that was all.  I have no idea if she knew who I was - but it was important to me to do those three things - Tell her I loved her, Tell her goodbye and Reassure her that her family would be taken care of when she left.

      At the time, I thought my compulsions were odd.  But I find now it isn't such an odd ritual.

      Proud member of the Cult of Issues and Substance!

      by Fabian on Thu Jan 17, 2008 at 01:25:36 PM PDT

      [ Parent ]

      •  Not odd at all, Fabian. (2+ / 0-)

        Recommended by:
        Fabian, GreyHawk

        And thank you for telling that intensely personal story.  It helps.

        Read or *listen to* my SF novel for free. (-7.13/-7.33)

        by Shadan7 on Thu Jan 17, 2008 at 01:29:22 PM PDT

        [ Parent ]

      •  Absolutely the right thing! (3+ / 0-)

        Recommended by:
        Shadan7, Fabian, GreyHawk

        I used to think that being silent was better but after a number of encounters with death I came to see it as a step in life, not a terrible event. Simply we all must die; it's inevitable.

        Making sure what needs to be said and taking the initiative to do so is SO important. The one passing needs it as much as those left behind. They need reassurance that all the earthly issues and concerns will be taken care of so they can complete the process of dying in peace.

        The one's I worry about are those who don't say anything or when death comes without notice and the opportunity is lost.

        You did all the right things, I believe. You followed your heart.

        "What a peaceful world it would be if Barbara had aborted!"

        by DevonTexas on Thu Jan 17, 2008 at 02:00:29 PM PDT

        [ Parent ]

        •  I passed up an opportunity (2+ / 0-)

          Recommended by:
          Shadan7, GreyHawk

          to see a friend dying of AIDS.  It wasn't the disease, it was the death.  I was uncomfortable simply with the idea of death, especially since he was near my own age.  Mortality in general, I suppose.  I knew he was very ill, unlikely to recover and I didn't go.

          So when my great aunt was ill and dying, I thought of my previous decision with great regret.  It wasn't because it would have been such a comfort to him, because he never did regain consciousness.  It was because I felt I had reneged on an obligation that I had.  Because I was a big fat coward.  :(

          Proud member of the Cult of Issues and Substance!

          by Fabian on Thu Jan 17, 2008 at 02:57:59 PM PDT

          [ Parent ]

  •  Have you heard about this study? (5+ / 0-)

    Just out in the past couple of weeks:

    Reversal Of Alzheimer's Symptoms Within Minutes In Human Study

    An extraordinary new scientific study, which for the first time documents marked improvement in Alzheimer’s disease within minutes of administration of a therapeutic molecule, has just been published in the Journal of Neuroinflammation.

  •  I feel for you (8+ / 0-)

    My mom is 82 and is living with me now for a few years. I have watched her decline and am now getting worried. She has sometimes forgoten how to shut the water off after a shower. It is very scary. I am afraid to leave the house for the fact I might not know what I will find upon returning. I realize reading your series that I don't know that I can be as strong as  you. I only hope that I can.
    You are doing a very wonderful thing for your MIL.
    May you be blessed

    Don't worry about the world coming to an end today. It's already tomorrow in Australia " (Charles Schultz

    by woodtick on Thu Jan 17, 2008 at 12:37:18 PM PDT

  •  Thank you for this post! (4+ / 0-)

    Recommended by:
    cotterperson, Shadan7, ebbinflo, GreyHawk

    My mother works at an "adult daycare" for people who have Alzheimer's or other forms of dementia so their family members/care givers can get a break for a few hours during the day.

    I am constantly moved by her stories of selfless caregivers who have sacrificed so much to care for their loved ones.

    •  In my mind . . . (1+ / 0-)

      Recommended by:
      GreyHawk

      ...those who provide care for others who are not family are the ones to be considered selfless.  Thanks to your mom, and to you for your comment.

      Read or *listen to* my SF novel for free. (-7.13/-7.33)

      by Shadan7 on Thu Jan 17, 2008 at 12:51:09 PM PDT

      [ Parent ]

      •  Caregivers (3+ / 0-)

        Recommended by:
        exNYinTX, Shadan7, GreyHawk

        who are not family have indeed tended to be selfless.
        My father who passed 3 weeks ago was in a home in AZ.
        Altho he got to the point of not being there, his caregivers were always there for him. They would call me weekly to update me and I could hear in their voices true concern.
        What wonderful people they are.

        Don't worry about the world coming to an end today. It's already tomorrow in Australia " (Charles Schultz

        by woodtick on Thu Jan 17, 2008 at 01:08:49 PM PDT

        [ Parent ]

  •  Please know you are in our thoughts (2+ / 0-)

    Recommended by:
    Shadan7, GreyHawk

     Thanks for sharing you story and not sure if you might have seen the story the story that appeared in last weekends Chicago Tribune and it was about a writer at the Trib that has both parents with Alzheimers..  Just thought you might be interested and please take care...

    Timid men prefer the calm of despotism to the tempestuous sea of liberty. Thomas Jefferson Go Cubs!

    by ebbinflo on Thu Jan 17, 2008 at 12:40:41 PM PDT

  •  mom has it, I had a sm. stroke yesterday (6+ / 0-)

    My mom is starting to lose words with 73 right around the corner. Yesterday I had a TIA - a small stroke that passed relatively quickly. I'm just forty and I've come home to help get the farm ready for sale ... but the pain in my back since last summer has proven to be something more serious than a troubled joint.

    The other day I found her puzzling over her bank statement. There was a warning about ATM charges on it. "Is this about your ATM card? I don't have an ATM card!" This went on for several minutes. Today she is off on a road trip, forty miles to visit her even more confused older sister, who just had a hip replacement. I think its OK, as its the same roads she learned to drive on in the 1950s, and not much has changed here.

    This aging business is for the birds - wouldn't wish it on someone I don't like. My mom is lucky, here in small town Iowa. Around fifty the younger folks start "visiting" the older people every few days. Several of my cousins and one neighbor stop on a regular basis to see her. I have a younger brother who is in good health but he is three hundred miles away. I'm sure he'd come back or she'd go there if it came to that.

     I wonder how the elderly handle it when they don't have younger relatives or neighbors handy ... must be frightful.

    •  Take care of yourself - (2+ / 0-)

      Recommended by:
      GreyHawk, Stranded Wind

      SW.  No kidding about this - do everything you can.  You're no good to your mom if you kill yourself in trying to help her.  That was a difficult lesson for me to learn a couple of years into this.  

      Best of luck to you!

      Read or *listen to* my SF novel for free. (-7.13/-7.33)

      by Shadan7 on Thu Jan 17, 2008 at 12:56:44 PM PDT

      [ Parent ]

    •  Does your mom have (2+ / 0-)

      Recommended by:
      Shadan7, GreyHawk

      a cell phone?

      We gave my dad one right after my mother died.  He loved to travel by train, but he scared the hell out of us as his short-term memory got spottier and spottier.

      So we got him the cell for Christmas, programmed everybody's number in it, and paid the bills.  He loved it -- he could call long-distance to anyone he wanted without worrying -- like a typical Depression kid -- about the cost (he'd tell everybody that "those calls are free!").  We knew that if anything happened to him and he wasn't able to communicate, he'd have the cell strapped to him and whoever was with him would be able to contact family members.

      He loved that cell phone so much, we buried it with him!

      The time for action is past. Now is the time for senseless bickering -- My T-Shirt

      by Frankenoid on Thu Jan 17, 2008 at 02:57:34 PM PDT

      [ Parent ]

      •  she has a car phone (1+ / 0-)

        Recommended by:
        Shadan7

        She has a cell phone purchased many years ago - a big brick that lives in her car. I don't think she has called on it in a couple of years so a test is in order. Its so old it doesn't have the ability to store numbers(!)

        Mom is already a bit confused once she gets outside of the places she knew growing up. We live five miles from her childhood home, this is a very rural place, and luckily she doesn't wander far.

  •  thank you. (4+ / 0-)

    Recommended by:
    Shadan7, Sychotic1, ebbinflo, GreyHawk

    this is a marvelously done and very valuable series. much appreciated. and all the best to you, your wife, and your mother in law.

    It's called the american dream because you have to be asleep to believe it. - G. Carlin

    by RabidNation on Thu Jan 17, 2008 at 01:06:21 PM PDT

  •  Towards the End - (4+ / 0-)

    Recommended by:
    Shadan7, GreyHawk, Ekaterin, woodtick

    My Mom would get real upset and say that she had to get home because her mother would be worried to death where she was.  I had a wonderful caregiver who worked with me so closely and treated my mother with gentleness and respect.

    When my mother was a little girl, her mother, a professional artist, would leave my Mom with an aunt and go to New York City for coursework.  So we would say to her, "Your Mama is up in New York at the art institute.  She took the train yesterday and wants you to stay here with us until she gets back."

    Then Mom would ask, "When is she getting back?" And we would say, "About two weeks,"  Which would always cause some concern, but the broader issue would be resolved.  We would ask, "Do you like staying with us?"  And Mom's politeness would always return, "Of course!  You have a very nice house."

    How do you respond when a person is desperate to see her mother and cannot understand that her mother died twenty years ago?  Alzheimer's taught me so much about how to treat another person.  Regardless of that person's mental or physical abilities - there is always the element of human dignity and a need for gentleness.

    My prayers are with you - - J

  •  Bless you, Shadan (2+ / 0-)

    Recommended by:
    Shadan7, GreyHawk

    for the loving care that you and your wife are providing.  May your MIL slip away peacefully to be with those who are calling her.

    Hugs and strength to you all. Your writing is beautifully compassionate.

    "Never" forget 8-6-08: the glorious day edscan "made" the Rec List.

    by Ekaterin on Thu Jan 17, 2008 at 01:40:36 PM PDT

  •  beautiful (2+ / 0-)

    Recommended by:
    Shadan7, GreyHawk

    Thank you so much for your diaries. They remind me of my grandmother's struggle with Alzheimers. She lived with my parents for seven years until her physical condition deteriorated to a point that she needed more care than they could give. Her last months at a nursing home were hard, she no longer recognized any of us was unable to get out of bed. It always surprised me when a bit of her personality would come to the surface though, still spunky and irreverent. The last time I saw her she was having a good day and her eyes lit up when we came in. I introduced her to my fiance, she looked at her, and with a twinkle in her eye, looked at me and said "I guess you'll be keeping warm tonight!" It made us both laugh which made Granny happy. Two weeks later she passed away quietly in her sleep.

    Unfortunately, caring for her broke my father's health and he passed away only a couple of years later. I hope you and your wife will do what it takes to care for yourselves and each other. You'll be in my prayers.

    Richmond Flowers is my hero!

    by ALliberal on Thu Jan 17, 2008 at 01:52:23 PM PDT

  •  Blessings to you and your family (2+ / 0-)

    Recommended by:
    Shadan7, GreyHawk

    May you and your family continue to find strength and the support of others.

    Thank you for a incredibly moving diary.

    "It's not enough to be right. You still have to use your nice voice." -said by my then six-year-old daughter; "Love binds us all."-willb48

    by be the change you seek on Thu Jan 17, 2008 at 02:12:08 PM PDT

  •  Thank you, for sharing this. (1+ / 0-)

    Recommended by:
    Shadan7

    Peace.

    Never, never brave me, nor my fury tempt:
      Downy wings, but wroth they beat;
    Tempest even in reason's seat.

    by GreyHawk on Thu Jan 17, 2008 at 03:37:07 PM PDT

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