Mom Update April 2013: Is It Time For Hospice?

My mother, who has advanced Alzheimer’s disease, had a grand mal seizure last Thursday that left her unconscious and earned her a trip to the hospital.  She’s back home and appears to be recovered, but she’s declining rapidly and we’ve been advised to contact hospice.

It’s been suggested that my mom has less than 6 months to live.  While I’m not in denial and wouldn’t be against a quick and merciful end to this madness, how do we know when a person with dementia is ready for hospice?  How do we know my mom is nearing the end of her life?

Experts say the average duration of the disease from diagnosis to death is 8 – 10 years.  But people can succumb to the disease in 6 years and I’ve heard some hang on for 20 years, which makes predicting the end for someone with dementia an educated guess at best.  Mom is about 8 years in.

In “Mom Update: February 2013,” I shared about mom’s decline and how her caregiver thought she had about a year left.  Now I’m hearing she won’t be here beyond the summer, which is a pretty bold statement, but one I take notice of since mom’s caregiver has twenty plus years of experience watching people like my mom come and go.

When I say mom is declining rapidly, it’s difficult to describe since she’s not the typical Alzheimer’s sufferer.  (See “If It’s Not Alzheimer’s, What Is It” for more on this.)  Mom walks and “talks” and is still able to feed herself, she laughs and jokes and holds the cat . . . and yet, there’s an emptiness to her eyes and an absence from the here and now that permeates all that she does.  She’s in the room, but she’s not.  It’s as if mom is a warm vessel going through the motions of daily living and carrying out lifelong mannerisms — but the captain is gone and mom is on auto-pilot.

I’m quite often asked if my mom still knows who I am, and for the first time I can say that I don’t think she does.  And yet . . .  even as I say this, I’d like to believe there will always be something that recognizes daughter . . son . . husband.  Something that just knows this is family. . . this is love.

This is the standard hospice admission criteria from ALZonline.  Mom meets 4 of the 6.

Hospice’s admission guidelines for persons with dementia of either Alzheimer’s or multi-infarct type (irreversible) are as follows:

  1. Person has to be in the end-stages of the disease,(stage 7 or beyond).
    • Person cannot walk, dress, or bathe properly without assistance.
    • Person is incontinent.
    • Person has little or no meaningful verbal communication.
  2. Presence of medical complications that require hospitalization. Must have had one of the following in the past 12-months: aspiration pneumonia, kidney infection, septicemia, multiple ulcers, and recurrent fevers after antibiotics.
  3. Deteriorating nutritional status as evidenced by difficulty swallowing or refusal to eat and progressive weight loss, etc.
  4. The person exhibits severe cognitive impairment as evidenced by progressive confusion, anger, frustration or withdrawal, inability to recognize family or friends, loss of ability to follow directions, loss of immediate and recent memory with progressive loss of remote memory.
  5. The patient/family desires no further medical intervention and/or aggressive medical intervention is considered futile.
  6. There are other existing medical problems accelerating terminal disease such as CHD, COPD, Renal disease, Liver disease, etc.

We are meeting with hospice on Saturday to determine if mom qualifies for services.  If she does, hospice support will be provided in her home and will augment the care she’s already receiving.  If she doesn’t, we’ve had a trial run and know what to expect when the time comes.

I think it can go either way, and I’m not attached to either outcome.

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Comments

  1. Best of luck going into your hospice meeting. For what it’s worth, I think you’re doing the right thing. I lost my mom on Dec 15, 2012, and I have to say that hospice was such a godsend. I couldn’t have made it without them; the last three weeks were so difficult. I completely understand your uncertainty about knowing when “it’s time.”

    I had the same difficulty, and I think that’s common with dementia. In a way, I wish I’d brought them on sooner because I think the extra care would have been beneficial to keeping her content and comfortable. We were pretty near the end when I finally made the move.

    You and your mother will be in my prayers.
    Best,
    Ann

    • Joanne Leonardis says:

      I’m so sorry about your mom Ann, you’re just a little bit ahead of us, but we’ll soon be where you’ve already been. I’ll admit that I don’t want to witness the very end and that I hope my dear mom goes quick, before the end, so she doesn’t have to go through that. I was skeptical about the push for hospice, but my mother’s doctor agreed that it’s time to call. So we’ll see what happens. Thank you for commenting and sharing your story as well. I enjoy reading alzjourney.com and your mother sounds like she was a dear.
      I thank you for keeping us in your prayers.
      Joanne

  2. Joanne, I don’t have any wise words for you but I want you to know I am thinking of you and your family tonight and wishing the very best for all of you. Your mom has been so blessed by having you as her daughter.
    Love, Deb

    • Joanne Leonardis says:

      Deb, It’s always so nice to hear from you. We’re so far removed and yet we know each other well I think? As you say, there are no wise words — but I sure appreciate you and your kind thoughts. ~ Joanne

  3. Anonymous says:

    Joanne, It was so good to meet you last night. Your dad’s been informing me of your upcoming visits, so I’m glad I finally had the chance to meet you! I will be with you all as you travel this journey. You are not alone. ~ Cindy

    • Joanne Leonardis says:

      Hi Cindy! It was so nice to meet you as well. I wasn’t planning on going to my dad’s church on Sunday, but if you’re going, then so will I. Thank you for volunteering to be another “traveler” with me and us on this journey. Having wise “sisters” who have been down this road already is a great blessing and comfort. Thank you, Joanne

  4. Ginger says:

    Joanne.Yesterday I listened to a very insightful program on Alz. and of course thought of you & your mom.It also brought memories of a lovely woman with ALZ.who I use to massage weekly for a couple of years. You can listen to this program http://www.wmra.org/program.virginia insight. One of the guest spoke about his relationship with his mom & has written a bk. Blue Skies, White Clouds -Eliezer Sobel We should all have such a caring daughter. Many blessings of wisdom & strength in the coming months.

    • Joanne Leonardis says:

      Hi Ginger, thank you for sharing this program with me. I listen to WMRA often, but obviously missed it this week. I’m familiar with Eliezer Sobel and gave his book to my mother for Christmas last year — such a wonderful idea. I look forward to listening to the program. Thank you again! ~ Joanne

  5. Jeanne says:

    My cousin. My friend. I think going through this now has been harder for me than with Grandma. Now I know so much more after working in the healthcare industry for the amount of time that I have. My hospice nurses at my hospital are some of the best women I know. I pray everyday. I cry everyday. I talk about your mom, my beautiful Aunt Ruth, everyday. As a healthcare worker I know this is the best for her, as her niece I wish I could stop time and go back to when she was at her healthiest. I’ve never hated this disease as much as I do know. The one thing that gives me peace is knowing that they do usually go peacefully. From the celestial interventions (as I call them) that I have been witness to, they seem to almost go backwards in time from adults to teens to children to babies and end life as they began. Grandma and Grandpa will be there to take her by her hand and take her home.
    As a family we will all get through this together. I know it won’t be easy. But we will one day sit and discuss our memories with laughter, smiles, and tears. And I know we will all feel her presence.
    And she will be happy.

    • Joanne Leonardis says:

      Dear Jeanne, cousin friend ~ You have such a kind and loving heart, and I thank you for sharing your insight about mom and this disease. I also want to thank you for your continuous support, I appreciate it. xox Joanne (I like how you call them “celestial interventions.”) : )

      • Jeanne says:

        “Celestial Interventions”
        It makes it easier to deal with on a healthcare level, and as a family member level I guess. I am blessed that God chose me to be able to help my patients with this transition. Give everyone my love. So glad you are sharing pictures. I know inside, your moms heart knows we are all praying for her and that we all love her, its her mind that has gotten fuzzy.

        • Joanne Leonardis says:

          It sounds like you do good work. I like to think my mom knows on some level that she’s loved. Thank you again. J.

  6. kathy says:

    Joanne, I love you so much my sister of Grace! You are the strength of a Lion and your Spirit is of a Sufi….you are always, and will continue to be imbedded in my prayers. This life is truly a journey of Love. Stay in the Heart my dearest friend. Love Kathy

    • Joanne Leonardis says:

      Wow Kathy, you need to visit my blog more often! Those are some awesome words of encouragement that I appreciate and just love right now. Thank you dear friend. I love you too. J.

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