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Things don't always work out the way you planned

December 17th, 2015 at 02:45 am


Come Fly Away With Me

Last night a nurse from the nursing home called me to ask permission to put an IV in my mother overnight to give her fluids. She hasn't been eating or drinking much and she was dehydrated. I said yes. She made it seem like it wasn't a big deal, that hopefully my mother would bounce back once she got some fluids in her.

Tonight I went over there after work. She is not doing well. As luck would have it, the doctor was there when I arrived. I'd wanted to meet her for a long time; I hadn't planned on liking her as it seemed to me these past few months that she relied a lot on meds to manage my mother's condition, and they don't ask you, they just give residents the meds. It was hard keeping track of them, the frequent changes in dosing, etc. You give up a lot of control when you put a parent in a nursing home, that's one thing I've learned.

I was prepared to have to fight them on my mother's care because I felt that doctors and nurses are trained to preserve life at any cost. I worried that overnight IVs might become a nightly ritual. My mother has a living will that says she doesn't want artificial means of hydration or nutrition. I went with her to draw up the papers, and this turned out to be about 6 months before she was diagnosed with AD. Anyway, these past 24 hours I've been wondering how or when to draw the line, and what would my mother want now, regardless of what she signed then.

I was so surprised that the doctor was not at all what I expected. She told me her own mother died of Alzheimer's and that she wouldn't put my mother through the IV thing again. She told me that due to not eating or drinking enough, my mother's sodium levels were already elevated. She said it was not too soon to call in hospice. I was kind of reeling. She's telling me my mother will probably hang on for a few more weeks but eventually slip into a coma and die.

They said she was curling up in a fetal position and refusing food. This is exactly what my grandmother had done before she died. I remember when I went to visit her I tried to feed her and she pushed my hand away with surprising strength. It was almost as if she decided it was time, and this is also what the doctor said about my mother tonight.

Tonight I told my mother I loved her very much, and she told me she loved me very much. I tell her this every time I see her. So part of her is still there, because she said it back. I sat with her a while and held her hand, trying to soothe her to stop her moaning, something she has done a lot of for months now. She's not in pain; it almost seems like anxiety to me.



The doctor said that dying of dehydration is a painless way to die but they will make sure she's comfortable regardless. Hospice nurse is expected to arrive on Friday.

The doctor didn't know my mother was an artist, so while I was in with my mother, the doctor and the nurse with her googled my mother's name online and were admiring her work. Then they popped their head in my mother's room and saw the smaller pieces I'd brought in for the walls. The doctor said she wanted to buy one of her larger pieces. My mother, who had been lying there moaning with her eyes closed, opened her eyes wide when the doctor said this. So she understands what's being said, she's just not really able to communicate or respond. It's really sad.

Coincidentally, I emailed the owner of a gift shop where I'd dropped off 15 or so smaller pieces right after Thanksgiving. I emailed her to say well, i haven't heard from you so I guess you haven't sold anything; if you want to lower the price by 10% or 15%, you can. She wrote back to say she'd just sold the most valuable piece I'd left there the night before. I was so happy. My mother would be psyched, if only she knew.

I feel so very sad. Everyone must die, I know, and I have to remind myself that my mother lived a rich, fulfilling and productive life. She is 81. There have been many times these past few months when I inexplicably feel I fiercely miss her, and can't wait to see her again at the nursing home, even though I just saw her a day ago. Before she had the Alzheimers, I was not this close to her, but I think I'm just trying to spend as much time with her as I can before she goes. I feel I have been grieving for her for many weeks now, in truth, and I know I will miss her very, very much when she's gone. I don't know how I will deal with that; the finality of death is what scares me. When she's gone, my life will be changed forever.

I can't help thinking about that one last little trip I'd wanted to take her on when she was still living at Maplewood last summer. I had gotten into the habit of doing little field trips with her; one week it was a museum in Westchester County, while another week she was thrilled with a trip to an eclectic garden nursery because she got to stroke a big fit cat lying on the counter in the gift shop. But the one trip I wanted to take her to, but didn't, was a small but exquisite Japanese garden, also in Westchester County. We had in fact been there once before but I knew she wouldn't remember it and it really was so beautiful. There were a few weekends that summer when it was just too humid and hot to go and so the summer wore on and now it is too late.


Out of the Woods IV

I am glad 2 of my male friends came with me to visit her there, along with her cousin from New Jersey and her faithful neighbors from her old condo. I am glad for the meals I shared with her there, and the walk we took around the new condos across the way, and the walk around the pond with the fountain she could see from her window. I am so very glad for the countless times I pushed her in her wheelchair, outside around the pond or, when the weather got too chilly, up and down the hallways, on the first floor where we could look at the fish tanks and the art on the walls, just to get away from the depressing 2nd floor.

Now I will have to fast forward the funeral plans, something I'd been procrastinating about and planning on putting off til after the holidays.


Winter Grove

This also means that, unexpectedly, my sister and I will inherit a sizable sum that I assumed would be sucked up by the nursing home in a year or so. To be perfectly honest, I would rather not inherit anything than have to give my sister half the money. She emotionally mistreated my mother for years, abandoned her when she became ill and walked out on me. We haven't talked since June and she hasn't seen my mother since March, before I had to move my mother into assisted living. For that I cannot forgive her, and I will hate like hell to have to fork over her share, but do it I will, to honor my mother's wishes. I'm honestly not even sure my sister will show up for the funeral.

I want to have calling hours so that friends of my mother's can stop in if they wish. I think that would be a comfort to me. What I'm envisioning as a brief funeral and burial will be private, family only.

But I may be the only family there if my sister doesn't go and my mother's cousin from NJ doesn't go. Maybe she would; I'm not sure as my mother's cousin just lost her husband a month ago. I think my dad, long divorced from my mother, would go to support me, but if not, I would be all by myself. That's why I want my mother's friends to show up, to support me the way my own friends, here online and elsewhere, have done. I would be lost without you. A special thank you to FrugalTexan. No matter how mundane, rambling or boring my posts are, she never fails to leave a little encouraging note, just to let me know someone is reading my thoughts. Thank you, FT. Hugs to you all.

27 Responses to “Things don't always work out the way you planned”

  1. creditcardfree Says:

    ((Hugs)) to you PS! I read ALL your posts, so know I'm listening even if I don't always respond. This life transitioning to death is a blessing, yet so painful at the same time. I'm always in awe with the pictures of your mother's work. I have an artist daughter so I know the skill and time those works of art take. Your mother definitely lived her talents, didn't she?

    I will hold you in prayer in the coming days. (((((Hugs)))))

  2. FrugalTexan75 Says:

    Oh wow Patient Saver. I am so so sorry to read this. Frown You have done so much for your mom, especially this past six months or so. I'm sure in her own way she knows this, appreciates it. It's good you have the memories of these last times together - memories of knowing you gave your best to your mom til the end. Your sister may be getting half of the estate, but she is also going to have to live with a lot of regret.

    Your posts are never boring or mundane. I'm glad though that I've been a little bit of an encouragement to you.

    {{hugs}}

  3. Laura S. Says:

    I, too always read, even if sometimes I don't respond. Your posts are so thoughtful. I am sorry about your mother. I know this has been a tough year for you. Love the artwork, especially the one in the middle with no name. Take care.

  4. Thrifty Ray Says:

    Xo dear friend. Even though we haven't met yet, I feel you are family and I am so sorry you have so much to deal with right now. Your mommas art is beautiful. Having lost both my parents, my heart is breaking for you. Take care of yourself during this difficult time. Remember what matters and let go of the rest..

  5. Joan.of.the.Arch Says:

    May your mother pass in peace. May you hold up and be held up. May your sister rot in ---no, I won't say that. I don't even mean that. My mother died in September; one of my sisters who had become estranged from her did not come for the funeral. Actually, that was okay, but I'd had years to think about how I would deal with my sister when my mom died. Sounds like it is newer for you. Also, I had my other sister, the one mom had moved in with. The two of us were with her as she died. Peace. You can get through this. You can.

  6. Kiki Says:

    I, too, always read your blog posts. I am so sorry to hear of the decline in your mother. Her art is beautiful, those woods piece are gorgeous. Such a talent the world is losing and you knew her as mom. I pray it is peaceful for you and your mother.

  7. Deb Says:

    PatientSaver, your blog is one of my favorites. You are such a good writer, able to express yourself so well with words. I wanted to let you know that my mom and dad have lived with me for 4 years. My dad is 90, has Altzheimer's, but is able to live with me because of my mother. My mom is 83 and worked as a hospice nurse until she was 77. She takes great care of my dad, and if not for her, I would have had to put my dad in a nursing home too. My main purpose in writing is to reinforce what the doctor told you, that patients have no pain when they die naturally by not eating or drinking. My mom saw it all the time. I, too, will not artificially keep my parents alive although I love them both with all of my heart. I'm thinking of you and giving you virtual hugs. You have been a great daughter! I am so impressed.

  8. MonkeyMama Says:

    ((HUGS)) All of the artwork is beautiful. I hope she passes peacefully as can be.

    These life experiences really soften and change people. I wish I could say the same for your sister, but it seems unlikely given the circumstances.

  9. ceejay74 Says:

    ((hugs)) You're amazing, and so is your mother.

  10. LuckyRobin Says:

    It is hard, indeed, to lose a parent. Harder still to lose them to a long and lingering illness of the mind. Many people cannot cope or simply do not wish to try. You could and that says a lot about your character. I hope your mother's way to death is easy and peaceful. You have done all that you could. Your sister, having done nothing, will regret it for the rest of her life, even if she can never admit it. By honoring your mother's wishes, your heart will rest easy. I wish there were people there for you during this difficult time. We all need to have someone on such a sad day. I think we will all be with you in spirit and hope that will offer you a small amount of comfort.

  11. VS_ozgirl Says:

    I'm so very sorry to hear your sad news! They do say (as they did with my nana) that it is one of the most peaceful ways to go and that it gives family a chance to say goodbye. You've been a wonderful daughter and she is so lucky to have you. My thoughts are with you x

  12. CB in the City Says:

    You will be very much in my thoughts. I lost my mother at this time of year -- Christmas Day, actually, though it certainly didn't seem like Christmas that year. I took her on little outings, too. The last one was to see the lights at the Soldier's Memorial -- she fell asleep in the car, and didn't even see them, and I thought I would have another chance... You must take solace in knowing that you have done everything you could do, and you have loved her, which is the greatest gift anyone can receive. I wouldn't even waste any energy on your sister; she must be in her own private hell (of her own making, I'm sure) to behave the way she does. I want to add that your posts are never boring; they are riveting, actually. I wish you peace and serenity in these coming difficult days.

  13. PNW Mom Says:

    You are in my thoughts and prayers Patient Saver....big hugs to you

  14. pjmama Says:

    Thoughts are with you! So sorry to hear about such a painful loss. Your mother is so very talented, and it's great that she got to see her work being appreciated at least one more time. As for your sister, everyone has a reason and no doubt she'll regret her own absence in due time. As hard as it is to say goodbye, at least you have a little comfort in the closure it provides. Take care of yourself!

  15. Ima saver Says:

    I wish I could be with you right now and at the funeral. My sister too, was an uncaring daughter. She use to say that she could not wait until the old lady died. The day after she died, my sister moved into her house and changed all the locks so that I could not have any of my mother's posessions. I can not understand why family acts like that. My husband has been going thru the same thing with his brother since his father died last month.
    We will all be thinking of you. We wish you strength and we love you.

  16. Butterscotch Says:

    I always read your posts as well and this one made me cry. I appreciate you expressing your emotions so clearly. Your pain reminds me to be more patient with my mom who is always on my nerves. Someday she wont be here anymore and I forget that. Your posts remind me to not take her for granted.

  17. laura Says:


    Love and prayers sent to you on the wings of an angel. Your mom is much talented and much loved. (hugs)

  18. SecretarySaving Says:

    I am in love with the Winter Grove painting! It absolutely beautiful. Could you still do the Japanese Garden trip and show her pictures and talk her through it?
    A fun idea would be reading Christmas books to her for right now. Maybe a book a day if you are able to visit that much. I am sorry about the Dr and your sister. When you are there are you able to feed your mom? Will she eat for you? Sitting with her and holding her hand and letting her know she is loved is the most precious gift you can give to her. You are doing an amazing job.

  19. snafu Says:

    {{Hugs}}} and prayers. We read your posts and admire your determination, planning and stamina. I hope you know we are all here to listen and offer succor.

  20. Livingalmostlarge Says:

    I am so sorry about your mother sending you hugs and prayers. I always read your posts even when I don't comment. I was hoping that you would have more time and spend down all your mom's money for her care. I know you'd rather have time than money. Know that everyone on SA will be there in spirit to support you. I cried reading your post.

    I know your mom can't respond but I know that she understands everything. I promise she does. My great grandmother passed the exact way in 2009 and she waited for me. She died through dehydration but she was told I was coming and passed the morning after. I had just enough time to visit her the evening before and morning of to talk and tell her about everything. Your mom is still with you until she's ready.

  21. Petunia 100 Says:

    Your mother's work is lovely. I especially like in "Out of the Woods IV" how the woven pieces make the pathway look like cobblestones.

    I'm so sorry that she is declining. Alzheimer's is a horrible disease.

    You have done the very best that you could do. No one can do more than that. Your mother knows that you are there and that you love her. I'm sure it is a great comfort.

    {{{{hugs}}}}

  22. NJDebbie Says:

    PatientSaver, I was really dreading the day you'd post about this. It makes me so sad that your sister, no matter what lead to having a distant relationship with your Mom, won't even honor the fact that she gave her life and took care of her. Meanwhile, keep your head up high for you've done everything possible to keep her comfortable. ((HUGS))

  23. Carol Says:

    Patient Saver, so sorry to read this time has come so soon. I hope you find that all the care you have given your mom leaves you with a good feeling after her passing.I hope hospice is as comforting to you as we found it.Sending hugs!

  24. scottish girl Says:

    You're in my thoughts. So sorry to hear.

  25. maryadavies Says:

    I'm so sorry to hear this. *hug* It's hard to see a relative who was once so active and vital just go downhill like that.

    It was hard to see my mom die, wasn't so hard with grandma but she'd alienated a lot of people before she ended up going into hospice in our house.

    All I can say is you did your best, your sister may not know it, but you did your best. Keep your head high and hang in there. *big hugs*

  26. alice4now Says:

    Sending hugs and support, I can't imagine what you are going through. It is obvious, though, that you love your mother very much, and have been taking very good care of her.

  27. Miz Pat Says:

    I am sorry for all this happening. You are so fortunate that you have this opportunity to truly say goodbye and to bond with your mom. Many of us don't. Remember that when your sister freaks out later. You had the blessing. She didn't. This is going to hurt her spiritually for a really long time.

    Dear Friend. You are in my prayers. Your mom's work is a wonderful testament to her spirit and love of beauty. Thank you for sharing those photos with us.

    I am praying you get to have the funeral you want and the support you want. God bless you, dear.

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