No announcement yet.

Caring for the Caregiver?

  • Filter
  • Time
  • Show
Clear All
new posts

  • Caring for the Caregiver?

    This post is about me but the thread is for anyone in a caregiving role.

    For the past 2+ years I've been Primal, with varying degrees of adherence. It's really changed my health for the better and I'm quite the proselytizer to friends, family and patients. My mother was my best convert. She was 100 percent Primal as of August 2011. She became super fit and had great energy.

    But early this summer she started dropping a lot of weight and became quite weak. She was still teaching, as well as taking care of my stepfather, who has advanced Parkinson's with dementia. She was under so much stress. Her friends thought she had an eating disorder, because she'd been so pleased to lose weight in the fall, and her eating habits seemed weird to them. I thought she was just under a lot of stress. I didn't see her for about 6 weeks because she taught at night and I worked during the day. When I saw her, on the day she was diagnosed with Lung Cancer, I was shocked at her appearance. She was a skeleton.

    I've taken a leave of absence from work and am staying with Mom part time to take care of her (aides take care of my stepfather). My sister, who lives in another country, has spent the last 6 weeks in the house with Mom, which allowed me to spend most nights at my apartment. My sister is leaving this week, which means I'll need to move in, which I'm dreading. Mom has Stage IV lung cancer with metastasize to the brain and spine. She has had total brain and lung radiation in the past month. There is a small possibility that she'll have some additional brain radiation. She has just been enrolled in hospice. She already has a significant amount of brain injury; it's not clear if it's from the brain mets or the radiation.

    I'm really struggling to maintain a healthy lifestyle. For the first few weeks, my friend and I made all of Mom's food. Everything was organic, and largely Primal. And then suddenly her tastes and personality changed, and now she only wants sweets and baked goods. The hospice nurse says let her have whatever she wants, which I agree with. We are not trying to prolong her life at this point, just keep her comfortable and safe. Now, even if I offer her a choice of formerly favorite meals, she typically will reject them and send me out for various baked goods, frozen yogurt (multiple times a day)...I consider it a triumph when she'll eat something like pizza now because it will actually fill her up for more than an hour. (Otherwise, she summons me to bring her various snacks at all hours of the day. Oh, the fun of steroids.)

    I'm finding it hard not to frozen yogurt and bites of her food. Part of it is being trapped in this house for hours or days on end. I keep healthy things around but when I'm running upstairs with "treats" 15+ times per day, it's hard not to have a nibble. Additionally, we have a very weird kitchen situation (too complicated to go into) but I don't have much in the way of cooking equipment or storage space.

    As I wrote this email, my mother 1) ordered me to bring her some key lime pie and 2) advised me that I would feel amazing if I gave up sugar 100 percent for one month.

    So this is my primal challenge for the next 21 days. Be 100 percent Primal while surrounded by non-Primal food and maintain my sanity while watching my favorite person in the world disappear.

    I know I'm not the only person on this forum struggling to take care of an aging parent or an ill spouse or child. I welcome any advice you have or just to hear about your experiences. More than help with the food I'd appreciate any help with how you maintain your spirits. I'm trying to get into a group for friends and family of cancer patients, and I'm hoping that meeting some other people in the same boat will be helpful. I already lost my father to cancer many years ago, but at that time my mother was his primary caregiver.
    Il faut vivre et non pas seulement exister.

  • #2
    Gosh I am so sorry to hear about your situation. I'm not sure I have much useful to offer in the way of advice, but my strategy would probably be to stock up on whatever your primal "comfort foods" are. For me that might be paté and thick/creamy soups and eggs. For you it might be totally different things -- but the idea is to have them on hand when the nibble urge hits.

    If you are in an okay financial situation I would think you could buy stuff that could be refrigerated and nuked, if the kitchen situation doesn't allow a lot of fresh food preparation. Better to nibble on something that might not be super best than something terrible.

    And/or think of it as a travel situation: sardines/mustard, macadamia nuts or some kind of nut butter, hard cheeses if you do dairy.

    Body weight exercise or convict conditioning are good for filling in chopped up free time with something besides nervous (or anxious or bored or take-my-mind-off-what's-going-on) eating. Keep your mind on staying in top condition so you can be the daughter you need to be through this tough time.

    Good luck with the caregiving. It is hard but you will never regret the time you spend taking care of your mom.
    "If man made it, don't eat it." ..Jack LaLanne
    "It doesn't matter how beautiful your theory is, it doesn't matter how smart you are.
    If it doesn't agree with experiment, it's wrong." ..Richard Feynman

    beachrat's new primal journal


    • #3
      So sorry to hear about your mom. Beachrat above has some great ideas to help you stay on track with primal eating.

      As hard as it is, you're fortunate to be able to take the time from work and give mom your time and loving care, rather than have to relegate that to home care. She's in good hands. Make sure you make some time each day for yourself, as a respite for you, to keep yourself balanced. Even half an hour, if you can. Didn't you used to keep a sledgehammer in your apartment? Bring it over to Mom's house.

      I've not been in your situation, but my mom cared for her husband through stage IV lung cancer with brain and adrenal mets as well, which fortunately (yes, that sounds sort of wrong, but the opposite can be worse, as you know) progressed rather quickly before he became completely dependent. It wore her out, as she didn't take time for her own self care along the way.

      Not sure I have much to offer, but my thoughts are with you, and know that your mom is lucky to have you there.
      My musings

      The old stuff


      • #4
        Thank you both for your reply. Luckily, there are plenty of grocery stores around here where I can get Primalish food. I just have to stay away from all of her treats!

        My main stress is not actually my mother but the fact that she is in my stepfather's house. She pays for everything, including his 24-hour care, but his daughters can't wait for her to die so that they can move in (it's a townhouse)...but they don't want her to stop paying too soon! They are not happy that my sister and I have been staying in the house to take care of her. I long to be in my apartment with my cat. I actually can't sleep while I'm here, which is why I'm up right now. I just realized tonight that while my mother is able to walk to the bathroom without assistance, I'm going to sleep at home 5 nights per week in order to get some rest. It's because I'm so stressed about the situation with the stepfamily more than my fears about my mother. I wish I could take her to my little apartment to care for her but it would break her heart to leave my stepfather. And as she's on the top floor of this house, pretty soon she's going to literally be trapped in this house. We'll see; when her mind finally goes I may spirit her away to my apartment. Hospice is concerned about her being in a house with so many stairs.

        I was 100 percent on the eating front today. I wish I could also focus on weight loss by eliminating all fruit, but I think that's a bit much for me to take on right now. Tomorrow I'm going to work out. No sledgehammer anymore, alas! I would love to get some stress out. But this house is so narrow there's no way I could swing it without hitting all the walls in one go! I'm also going to meet someone at a support organization for people with cancer and their friends/family to see about joining a support group. And I'm going to start accepting invitations from friends to meet up for drinks in the area...maybe I can convert them to walks instead of drinks. I've been turning down most of my friends because I feel guilty being away from Mom, but I think I'll go nuts if this is my entire life.
        Il faut vivre et non pas seulement exister.


        • #5
          I'm really sticking to the 21 day challenge, although I am having some rice, which I never would have done in years past. And I'm not trying to eliminate dairy this time. I want this to be something that helps sustain me rather than that adds additional stress to my life as I don't feel like I have extra reserves today.

          I went to the gym today, thanks to one of Mom's gym friends who paid for a two-month-membership at the fancy gym in their neighborhood. I did intervals on the treadmill, kettlebell swings and worked on assisted pull-ups. I'm going to try to go there any day that the nurse's aide from hospice visiting nurse service comes. (Can I tell you how much I love hospice? They are so reassuring and compassionate.) I just need to be out among people.

          My big news is that I called HR at work to find out about going back to work three days a week. I have a lot of mixed feelings about this obviously. I need the income and it's an also an excuse to be out of this house.
          Il faut vivre et non pas seulement exister.