Vicissitudes

I thought I’d have a good block of time to finally write a post, but I can’t get more than a few minutes at a time away from Mary, so this will be written in little pieces and may be a bit disjointed. With the amount of medication I gave her yesterday, I thought I’d have a totally somnolent Mary all day.

But no. She has basically been sundowning for a couple of weeks straight, and we are working on finding the right combination of meds to make her comfortable. Hasn’t happened yet – or the meds work for a couple of days and then Mary changes her MO and the meds no longer touch that restlessness and anxiety. The upshot is that I can never leave her unattended for more than a couple of minutes at a time. She can no longer walk on her own, so I have to be there to assist her every time she wants to move, which is every 10 minutes or so.

I have recently returned from cardiac rehab following open-heart surgery. While my weight restrictions (lifting no more than 5 lbs in each hand) have been eased a bit, lifting a 105-pound woman is not recommended at this point. But I have to lift her numerous times a day. Sometimes she can help, other times she is dead weight. While I was in the hospital and rehab, Mary was in respite at the local nursing home. When she returned home, she showed a marked decline in functioning, including an inability to walk independently safely.

Before she went to the nursing home, she had stopped eating any food except breakfast, and this continues. The amount of food she eats at breakfast is smaller – now only one egg and a piece of bacon or 1/2 piece of toast – and we are encouraged that she has, at least subconsciously, decided that she has had ENOUGH. Seven years of this suffering seems enough to us. Mary is finally beginning to talk about end-of-life matters, which is bizarre, because she is so disoriented all of the time that she cannot carry on a conversation. But this will break through the fog: “This disease makes me feel like my life is just a waste.”

This from a woman who has never, in her whole life, expressed her feelings to anybody (we don’t know if she talked to her husband). Yesterday, during her most restless period, we had a l-o-n-g conversation about her condition, her feelings, and her views about death. Unfortunately, because I never had a minute to myself, I could not write her comments down before I forgot them. And I am so weary that my brain has not retained them. It was pretty interesting stuff from a woman who is known for her rigid refusal to talk of anything more personal than the weather. I can only assume that this is one more inhibition that is being broken down by scrambled neurons, plaques and Lewy Bodies.

Hospice picked Mary up as a client again just before she went into respite, and we had hoped they would support us in our treatment of Mary, which is based on the premise that when she is telling us, through refusal to eat, that she is ready to go, we need to respect that and not force food on her. Au contraire, they seem to feel that we are starving her and that all we need to do is to keep putting luscious meals in front of her and she will decide she wants to eat. Been there, done that for three months before I got sick of throwing away meal after meal. So now I just ask Mary throughout the day if she would like tea, crackers, a sandwich or whatever, and she always says no. I do give her plenty of water, which she drinks. Everyone’s situation with his/her Alzheimer caree is different, and we (the daughters and I) are just pushing ahead based on our knowledge of Mary and her previously-stated wishes that she would never like to live like this.

But I have to admit that I feel very uncomfortable with folks thinking that I am starving her or in any other way trying to hasten her death.

We had two aides who would come in to help, but one has disappeared off the face of the earth and the other is very expensive. We have an aide from Hospice, but she comes just after Mary has had breakfast. undergone the difficult and exhausting process of getting changed and dressed and is fast asleep. I am pretty much up to the challenge now of single-handedly doing the transfers, bed baths and colostomy changes on a person who cannot stand up. It is a little wearing having to watch her every minute of the day because she might try to get up and will fall (why hasn’t someone invented an adult playpen?). Also not being able to go to bed until she is really sound asleep, which could be as late as 1 a.m. is tiring. Overall, though, it is just one more change in a constantly-changing scenario. We keep adapting, and some of the ways in which we have to change are not so comfortable, but soon everything will change again, and this period will look like a piece of cake.

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9 thoughts on “Vicissitudes

  1. Avatar of DeniseDenise

    Oh, Kristin! I’m so sorry about your surgery. I’ve been thinking about you and had been hoping all was okay. Oh, my heavens, it wasn’t!! What happened?

    I’m also so sorry about Hospice’s respond to Mary’s wish. I’m a bit surprised, too, because this is something that they would encounter regularly.

    I completely, absolutely support your decision. It’s Mary’s wish and you are so right to respect it. The term when someone stops eating (and often taking in fluids) is voluntarily stop eating and drinking (VSED). I wrote about this and aired a talk show to discuss last September; you can read and listen here: http://www.caregiving.com/2011/09/im-ready-will-you-help-me/

    You actually are providing Mary with a very comfortable end of life. If only her dementia would cooperate and let you both have some rest.

    I have a feeling your conversation with Mary will remain with you for a long time. When you have time, the details will come back to you. And, you’ll be ready with paper and pen.

    I’ve so missed you. I so hope you are feeling better.

    Reply
    • Avatar of KristinKristin Post author

      Thanks, Denise – I really am much better, healing fast and slowly gaining strength. It was a triple bypass, btw. I was in pretty rough shape for a while before the surgery but am ready to roll now.
      Thanks for your support of what we are doing here. It’s odd about Hospice, because they told one of the daughters that they usually encounter the opposite situation – families are pushing their carees to eat – but when they find one that isn’t they are skeptical. Oh well, we just have to do what we think is right no matter what others think.

      Reply
  2. Trish

    Kristin, I’ve missed you too and was concerned when we hadn’t heard from you in a long while. I’m so sorry about your surgery! I’m really surprised by Hospice’s response, too. I remember Shandi had trouble with one of the Hospice nurses (or aides) and had to switch people. I wonder if you can have another nurse assigned to your case so you have someone more in your corner and helping you with Mary?

    You have such strength and stamina to be able to get through all of this. It is quite amazing that Mary’s feelings are breaking through her tough shell and that you are there to listen to them.

    I’m sending you positive, healthy vibes and hope your own recovery stays on track. Take care, Kristin.

    Reply
    • Avatar of KristinKristin Post author

      Thank you very much, Trish!
      We are actually on our second nurse, as the other was reassigned to a different area. I think eventually this one will come around, but think it her stance is odd, coming from someone dealing with end-of-life issues.

      I also think what I am hearing from Mary is amazing. I have always gotten a lot out of being with people as they are dying because of the things they told me (I worked for years as a night-shift aide in a hospital, and sat with many pts as they passed). Moment-of-truth time, I guess. Mary isn’t at the end yet, but is getting close enough for it to be real for her.

      My best to you and the family.

      Reply
  3. Avatar of Bette

    Hi Kristin,

    I think of you often and am so sorry to hear what the last month plus has brought for you. I’m glad you are healing and hopefully you are feeling stronger too.

    I understand about the “time away” – it brings stress Kristin and I hope you are able to have some help – to look forward to.

    Sooo nice to see you! Hoping for good health for you and a feeling of rest whenever you can grab on to it.

    I’m so grateful for this update.

    Reply
    • kristin

      Thanks, Bette! A little rest is coming – I am looking forward now to 10 days in CA with my sister and her family. This is my yearly scheduled break, when Mary’s oldest daughter stays with Mary. I will get some rest then, although my sister’s husband has Alzheimer’s and one of my goals of the trip is to give her a break and some time away to see friends she has not seen for 6 months. She has a tough situation and is one not to ask for help.

      Hello and hugs to you and your family. Sounds like things are just a little more interesting at home than you would wish!

      Reply
  4. Avatar of KathyKathy

    Kristin,

    It’s good to “see ” you but my goodness, what a time you’ve had.
    How are you doing with your own recovery?

    I can only echo what everyone else has said here and am also shocked at the Hospice attitude.

    I think it was amazing that Mary spent some quality time with you discussing end of life issues so clearly.
    She obviously missed you and feels safe with you, in her own way.

    Continuing to keep you in my prayers. :)

    Reply
  5. kristin

    Hi, Kathy – I think you’re right: Mary does feel safe with me in spite of the fact that she berates me regularly. Of course, I am the only face that she sees on a daily basis and her well-being is in my hands. Maybe it’s just the Stockholm Syndrome. I am looking forward to more of the windows into her soul.

    I am doing very well, actually. The docs say I am way ahead of schedule in my recovery. Just need to catch up on stamina and muscle (re)develpment.

    I have been catching up on your life and know life hasn’t been easy for you lately. I pray for you and Hubby.

    Reply
  6. Avatar of ejourneysejourneys

    Kristin, thank goodness your recovery is going well and that you are taking care of yourself. You are keeping an extraordinary balance with it all.

    What a blessing that Mary is opening up to you and that she feels safe with you. (I had to laugh at “Stockholm Syndrome.”) Thank you for your listening ear, in addition to everything else that you are doing.

    I record conversations with my partner (and also MD appointments). I use a digital recorder (the price on those has been coming down), along with transcription freeware. NCH has some wonderful products: http://www.nchsoftware.com/index.html — they have programs for recording through your computer, and I use their Express Scribe for transcribing.

    I hope you find someone at Hospice who is supportive of you and Mary. They need to listen to both of you and to your needs. I agree with Denise that you are providing Mary with a very comfortable EOL, and it is the job of Hospice to respect that.

    Reply

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