a crisis and a decision

I perched on the edge of my seat next to my father’s bed, ready to quickly move out of the way for the next nurse or patient care assistant that needed to get where I was. So far there had been three, and each time, I stood and moved to the other side of the bed, or generally just got out of the way. I felt out of place, in the way.

The first was a stern-faced woman, her hair pulled back in a tight bun and wearing turquoise scrubs. She brought my father a lunch tray – green beans, cornbread, macaroni and cheese, and a cup of brown tea with no ice – and, later, she checked his blood pressure and noted his vitals on a scrap of paper. She didn’t smile. The second and third wore red scrubs. They worked as a team to help my father stand, wobbly and listing to the right. With their assistance, he pivoted with shuffling steps and plopped into the chair that was also a digital scale. After getting his weight, they changed his gown. The sweat-soaked one he was wearing was removed, and almost simultaneously, a clean, pale-blue gown was draped over him, then tied in the back.

He was charming with each of them, even the one who would not smile. He joked that his weight was due to his incredible muscle strength (it’s not). He asked one if she was married (she isn’t). He flirted, and they humored him or ignored him, whichever was most appropriate.

But now we were alone. I sat in the chair beside his bed, holding his right hand for some time, letting go when it got too damp, holding it again. He watched the activity outside his door — other residents rolling by in their wheelchairs, nursing home staff in their colored scrubs pushing medication carts or bins of linens. And we talked.

“Why am I here?” he asked.

I did my best to answer that question, and my chest tightened with each word I spoke. My heart hurt.

You’re here because Mom can’t take care of you alone anymore, because none of us can. You’re here because you get confused, and when you get confused, you often get angry or mean. It’s too much for any of us. You’re here because we need help, and because this is for the best. You’re here because you need full care, more than we can safely do without some support. You’re here because Mom needs a break, and if she doesn’t get a break, she’ll die.

My father has dementia, and until now, we’ve mostly kept it quiet.

My father has dementia, and even though it is breaking our hearts, we made the decision to put him in a nursing home this weekend. Everything came so suddenly, after an evening of crisis. None of us were ready for it. But then again, I’m not sure we ever would be ready. I hope this current placement is temporary, a bandage, until we can figure out a long-term solution. I fear that it will become permanent.

I came home and baked yesterday. I baked a key lime cheesecake, one of Sam’s favorites. I grated limes, measured juice, whisked lime curd, blended cream cheese and sugar. The routine of the process calmed my mind as the sweet aromas of cheesecake filled the house.

The baking helped for a time. It helped until today, when Dad told me he wanted to go home, told me he wanted to die if he couldn’t.

sunset

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49 Responses to “a crisis and a decision”

  1. Denise — March 17, 2013 @ 6:27 pm

    Oh Merry-Jennifer, I am so sorry to hear this news. We keep having the “parent” conversations as ours are nearing that time when conversations need to be in place. In place or a plan, just in case. I have a heavy heart for you. Be strong, you know what is going to be best. xo

  2. Kathryn — March 17, 2013 @ 6:35 pm

    My heart goes out to you and your family. We went through something similar with my grandparents (and your father sounds uncannily like my grandfather, flirting with the nurses). Dementia is a terrible, terrible thing and I hate the way it steals the essence of a person. Thinking of you all xxx

  3. Brian @ A Thought For Food — March 17, 2013 @ 6:37 pm

    MJ,

    I can’t imagine how hard it was to open up and share this with us. And to have to witness this is something I can’t even fathom. But thank you for your honesty and for putting this down on your blog… Life is often ugly and difficult and we all have to find ways of getting through it. Even a key lime cheesecake offers such comfort.

    Sending hugs your way…

    Brian

  4. Carol Sacks — March 17, 2013 @ 6:42 pm

    A poignant, powerful post. My thoughts are with you and yours.

  5. Leigh — March 17, 2013 @ 6:43 pm

    I’m so sorry. I wish I had some advice or really anything that could make this easier or better for you, but I don’t. I’ve watched loved ones slip down this same slope, and it’s so heartbreaking. Know that we’re here if you need us, and if all you need is a cup of coffee and someone to talk to I’m here for that as well.

  6. Deb — March 17, 2013 @ 6:45 pm

    My heart aches for you. My father had dementia. My mother cared for him until he could no longer stand or walk without help. There are no easy answers, as it is an awful disease.
    I cherish my memories; some are from his time in the nursing home.

  7. Stacey — March 17, 2013 @ 6:45 pm

    Hurt me to read this. Toward the end of his life, around 92 years old, my grandpa also suffered with dementia and we had to also make the choice to get him into a nursing home. I also relate to the comfort you find in baking. Stay strong – sending positive thoughts your way all the way from Toronto, Ontario, Canada.

  8. Kim Foster — March 17, 2013 @ 7:03 pm

    MJ –

    I love that you wrote this and so eloquently. And it helped me.

    When I was in grad school, my grandmother who had Alzheimers and had always lived with my parents, got considerably worse. My folks went on vacation and without them knowing, I took her to the ER and abandoned her there, which was the only way she could get admitted to a facility that would care for her appropriately (because she had no money.) She thought she was just staying at the hospital. She didn’t feel abandoned that night, which helped. My parents came back from vacation and to be honest, were relieved. They couldn’t have done it, too much guilt, but they had been going crazy with it all for years.

    So doing that for your mom is a gift. Being strong for her is a gift. I can’t imagine how much she hates doing this, and how incredible it is to have you there. I’ve heard those words about wanting to die, being left to die, wanting to go home, and it just stays with you. I can still hear her begging to come live with me. It sticks to you. I can feel in your words how hard it is.

    That said, I see my mom sliding now at 82, as my grandmother did. She’s so negative and mean and depressed and kinda delusional at times. I know I’ll have to do the same thing as with my grandmother. I’ve been feeling a little alone about it all, like I’m the only kid looking at her mother wasting away and all that it means. Thank you for sharing your heart-breaking story. I guess we are all in it together.

    Love ya, honey. xoxo

  9. Eva — March 17, 2013 @ 7:03 pm

    I am so sorry……..as much as we hear about this, I don’t think our hearts are ever quite prepared when it happens to our parents. Thank you for being so open as I know it helps those struggling with similar issues. Prayers to your family.

  10. Jessica — March 17, 2013 @ 7:05 pm

    hugs. this is something, if maybe the only thing, i fear the most. thinking of you and your family. xoxo

  11. Heather in SF — March 17, 2013 @ 7:09 pm

    As I started reading your beautiful post my eyes welled up and I’m still dabbing at tears. You’ve described my parents too and yet my mom won’t make this decision. I’m scared I’m going to lose them both. Wish I could give you a hug.

  12. Brooke — March 17, 2013 @ 7:23 pm

    I’m so sorry, Merry-Jennifer! My grandmother moved in with us when I was teenager when her dementia meant she needed full-time care. Let’s just say that was not the easiest time of our lives. I don’t know how my parents got through it. But they did. Your parents are so lucky to have you. So so lucky. A big hug to you.

  13. Winnie — March 17, 2013 @ 7:46 pm

    Hugs.

  14. Tracey — March 17, 2013 @ 8:09 pm

    I’m so sorry.

  15. DessertForTwo — March 17, 2013 @ 8:38 pm

    MJ,
    I can imagine the pain and heavy heart you have. You are in my thoughts and prayers.
    We faced this difficult decision with my grandparents, one by one. We were so worried about Grandpa taking care of Grandma. Grandpa’s biggest fear was that something would happen to Grandma ‘on his watch.’ He took her to the hospital one night, and she passed away the following day. Though her passing was a knife in the heart to him (and all of us), he said he was comforted greatly by the fact that she was in a hospital when it happened—where she had any help she needed. So yes, I’m telling you that asking for help with the care of a loved one is a good thing. For your family, for grandma, even for grandpa.
    I’m so sorry your heart is being pulled like this.
    I’ll be thinking about you.
    xo,
    Christina

  16. Jo-Anne — March 17, 2013 @ 8:58 pm

    Thinking of you as you and your family work through this stage of your fathers life. I pray that you have serenity and are guided to a peaceful existence. My prayers are you with. ~Jo-Anne

  17. Jessica L. — March 17, 2013 @ 9:29 pm

    I always love your words, but today, I hate the reasons that you had to write them. My thoughts are with you and your family. Hang in there, I can’t imagine how tough the next few days and weeks will be, but I know you’ll make it through.

  18. Macaroni Mama — March 17, 2013 @ 9:33 pm

    Oh, my dear daughter. How eloquently you put this. I am so guilt ridden that I cannot put into words how this has devastated me. You do not need this burden. Thank you and I also have to thank your brother, Clay. He’s been such a big help. Dementia is worse than cancer, I believe. Thank you so much for supporting me. Your mother…Macaroni Mama.

  19. Alice Martin — March 17, 2013 @ 9:47 pm

    I’ve known you since you were are little girl and your dad has always been a pillar of strength to me. Dementia has robbed me a giant of a friend and also robbed me of my very best friend, my mom. Mom is in a wonderful place in Gainesville where she has found a comfortable place to spend each day. Their support of me and kindness to Mom helps me deal with the quilt I took on myself. No one can imagine how difficult all of this is.

  20. Maria Raynal — March 17, 2013 @ 10:28 pm

    Huge hugs to you, my friend. I wish for peace for you and your family. These decisions have got to be among the most difficult – I can only imagine how painful it must be. Xoxo.

  21. Cookin Canuck — March 17, 2013 @ 10:32 pm

    I am so sorry that you and your family are going through this. You wrote about it beautifully, honoring your dad and probably helping many readers with similar situations that they’re contending with.

  22. Kiran @ KiranTarun.com — March 18, 2013 @ 12:16 am

    I’m so sorry my friend. You all are very brave to go through a very tough decision like that. It made me cry. And I pray that you find solace in all of this. Soon. You are definitely in our thoughts and prayers. Hugs.

  23. Lana — March 18, 2013 @ 12:37 am

    MJ,

    I could feel your pain in the post you wrote. My heart aches for you, your dad and your family. The last sentence made me cry. I so hope everything works put in some way for all of you! Sending you hugs from SoCal with lots of sunshine!

  24. Rachel Winter — March 18, 2013 @ 5:41 am

    MJ
    I am so sorry to hear that you are going through this. I can only imagine how hard this is for you. Thinking of you, Sam, your mom and Clay and Maddie and Oliver.
    XO Rachel

  25. tami — March 18, 2013 @ 7:48 am

    tearing up this morning reading your post – i’m so sorry your family is going through this. so much love sent to you – and all of you – there today. xoxoxo

  26. Lisa @ Garnish with Lemon — March 18, 2013 @ 8:15 am

    This was beautifully written and such a heart wrenching experience. Watching our parents age and need help is humbling and difficult. Thinking of you as you and your family go through this.

  27. cherie — March 18, 2013 @ 10:54 am

    I am so sorry for your unhappiness, but remember that the dementia isn’t your father, and as hard as it is to hear it all it’s just his illness talking.
    It’s such a hard place for you all to be – you have my prayers for comfort and peace

  28. Windy P. — March 18, 2013 @ 11:21 am

    I’m so sorry to find that your family is going through this. My paternal grandmother suffered from Alzheimer’s and it’s just an unfair and heart wrenching situation all the way around. Hoping for it to get easier would be silly…I know it likely won’t. So I won’t hope for that, but I will fervently hope that you can make peace and do the best you can every day. That’s really all that anybody ever can. My heart and thoughts are with you.

  29. Ashley — March 18, 2013 @ 11:54 am

    I’m so so sorry to hear this. We went through something very similar with my grandmother recently. It’s a terrible and hard thing to go through. Thinking of you and your family.

  30. Di — March 18, 2013 @ 12:03 pm

    Bearing witness to our parents’ aging is heart-breaking. The only comforting thought I had regarding the process, was that it’s the natural of order of things….if the tables were turned and your dad had to usher you out of this world it would break his heart even more. Thoughts and prayers are with you.

  31. jennifer — March 18, 2013 @ 12:08 pm

    My heart and prayers go out to you. We faced the same issue with my wonderful mom. It turned into a very hard, very long, very sad goodbye. Keep your chin up (which is what my mom would always tells me as a kid) and know that there is lots of love for you and your family.

  32. Linda — March 18, 2013 @ 12:19 pm

    I have been in your shoes. Only for me, it was my mother, not my father. And, for me, it was more than dementia…it was Alzheimer’s…and I chose to care for her in our home. It was my decision, but it was a wrenching 3 years. It was exhauting, frustrating, tragic and I never felt I was doing all that I could, even though I know now that I was. After her death, I needed another 3 years to get over it. I got every germ that walked by…shingles, pneumonia AND depression; it took a huge toll on me physically and spiritually.

    What your family has chosen to do is a terribly difficult decision, but a good one. It’s good to put your mother first…she is among the living. You need to support her and care for her since she will respond to your attentions and heal. Your dad is being cared for, and you are spending lots of time with him which is difficult but good. But, at the end of the day, you are able to go home and BAKE to keep you sane.

    Don’t feel guilty; you are doing the best for everyone concerned. Dementia is a family affair; it affects every member of that family and each person must be cared for and loved at this most difficult time.

    I send you love and peace.

  33. Amy @ The Nifty Foodie — March 18, 2013 @ 1:44 pm

    Oh, I’m so sorry to hear. We recently faced this in our family, and my grandmother was devastated when she realized that she would no longer live with her children (they used to take shifts…monthly). It was just too much to care for her, and she gets visited quite often from her kids/grandkids now. Sending prayers your way…I’m so sorry!

  34. I am very sorry Merry that your family is going through such a rough time, its very difficult to see parents grow old.. We all do our best to take care of your parents but at one point- it is best for everyone to put them at nursing home in order for them get proper care. I hope the nursing staff at the facility takes good care of them.. its hard, extremely hard decision but I hope your father gets good care over there. Take Care

  35. Cheryl Arkison — March 18, 2013 @ 11:49 pm

    Damn, that really sucks. I want to swear more than that for you. For your family, for your Dad. Quell any guilt, continue to hold his hand. Continue to bake and nurture yourself and encourage your family to do this same. He is loved. You are loved.

  36. Di — March 19, 2013 @ 12:11 pm

    I read this line and thought of you and your family.
    “Strength is not measured by how long you hold on….sometimes more strength is used in letting go..,.”
    Keeping you in my thoughts and prayers.

  37. I am so sorry to hear this. I work with a company that does in home care for seniors and our specialty is working with seniors with dementia. We have a DVD available for families coping with this disease. It is so hard to watch the children and the spouses go through this. If you would like a copy of the DVD, please reach out to me. It discusses the stages of the disease and may prepare you for what your dad will go through. We work with a renowned Dementia expert, Teepa Snow. I wish you the best.

  38. thefoodpoet — March 19, 2013 @ 4:32 pm

    I think of the statement “Do no harm” and how this statement ripples out in how it affects the patient… and the family. The longer I have considered this statement, the more difficult it’s been to realize what that must look like for doctors, especially to figure out not only how to do no harm, but do less harm if that is the option presented. My uncle had early onset dementia. I saw the changes happen in him and it is incredibly hard to make the best decisions like the one you and your family made- to Do No Harm. Can I suggest to you also a wonderful poetry book by poet Carol Frost called “Honeycomb” – her mother had dementia and this book chronicles that well. Hang in there MJ. Sending hugs to you and your family.

  39. Elizabeth — March 19, 2013 @ 5:12 pm

    Know that you are not alone, many of us have you and your family in our thoughts and prayers. There is no right or wrong here. You will feel the guilt, no matter what you decide. Hope that knowing you are not alone will help to ease that feeling for you. Say your prayers and know HIS guidance through this process.

  40. Flavia — March 19, 2013 @ 8:48 pm

    Hi Merry, You are all in my prayers, especially your mom and dad. Sending love and healing thoughts your way. xo

  41. Lisa | With Style and Grace — March 20, 2013 @ 1:15 am

    Oh I am truly sorry to hear this, MJ. This is just heartbreaking as I can’t help but put myself in your shoes. I’m sending my love and lots of hugs your way.

  42. Betsy — March 20, 2013 @ 8:36 pm

    Merry, I think it’s not a coincidence that I stumbled across your site today as I was following a trail of food blogs and saw this blog recommended. I expected to find some yummy recipe, but instead started reading your post that felt so eerily familiar. Although it’s my mom for me, the circumstances are very, very much the same. My sister and I, too, have kept it really pretty private. I guess in a way to honor my mom, but also in a way to not talk about it. I’m not sure if that’s been the healthiest, but it’s been how it’s been. 🙂 So, I really appreciated seeing your openness and vulnerability. I hope baking will continue to be a calming refuge for you. I will enjoy checking out your recipes and your writing. Praying for peace for you and your family.

  43. jehanne@thecookingdoctor — March 22, 2013 @ 2:24 am

    I’m so glad to come across another doctor-foodie on the blog. My heart goes out to you, I’m sure it is a difficult phase, especially to be on the other side of the consult! My prayers for you and family.

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  45. Aggie — April 11, 2013 @ 12:05 pm

    I’m hugging you from my couch. I know it’s been a tough month (longer), I know I can’t comfort you more than anyone else, I know your heart hurt. Just know I’m sending you a hug…xoxo

  46. Sue Savage — April 13, 2013 @ 8:45 am

    God be with you and your family, it must be the hardest thing to watch the person you love slip away while they are still alive..Having had the experience of losing someone who was young..you come to appreciate what you have and draw strength from that loss. BE and DO from you heart and dont let others tell you how to deal with this. You are the one living it, and remember its OK to fall apart.. ACCEPT .xx

  47. victoria — April 30, 2013 @ 6:02 am

    I’m not a regular visit to your site, so this post whilst not from this month is a surprise to me. I’m so sorry for the challenges you’re facing, I can only imagine the heartache in dealing with his illness and now the issues surrounded with getting him the help you all need. Taking care of family includes taking care of yourself in the process, ensuring you are all around and well enough to care, but I’m sure that offers you little enough comfort. Sending you all the virtual hugs and support that can fit in one comment.

  48. Ken Smith — April 22, 2014 @ 7:17 pm

    I called your Mom last night and she told me about Truett. I was very sorry to hear the news. He was a great guy and we always enjoyed their company. Somehow Ryan found your blog site. How do you find time?
    Your Mom sounded a bit stressed and seemed to be having a tough time adjusting and caring for her Mom and Clay.
    Please know your family is in our hearths and prayers and I am sorry I did not know to attend the funeral.
    We have fond memories of being with your family and going to the UK alumni derby parties with them for many years.
    Ken & Lorraine

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