A Haven for Vee

Thursday, September 2, 2010

My Boat So Small

I feel sometimes as if I have set her adrift in a vast sea all alone. (Hyperbole is another one of my talents, of course, but I truly do feel this way.)

I felt it again on Monday when I tracked her down in the dining room where she was attending a concert. Though I looked all around, I could not find one person in that room who looked like my nana. Her roommate finally pointed her out to me. There she was slumped over in her wheelchair holding one hand to her head as if she were in pain and the other was dangling out over the arm rest. She looked so small. Much too small to be floating on that big sea.

The meeting went very well yesterday. I finally feel as if I've been heard by everyone. There was some immediate action taken on a number of levels. One of my biggest concerns is that, in their enthusiasm for taking good care of her, they've actually created lots of problems. Most of these issues are about food. I don't give a royal flip what the State of Maine says that they have to put on her tray, if she is upset by it, don't do it. It's only causing her to shut down even further. This one-size-fits-all approach isn't working for us. And I don't care if she's losing weight, which sounds awful, but I do not want products used that cause such distress and stress. Enough already! So the doctor heard that and duly gave his orders. Phew!

(If any of you are in the medical community, can you tell me what it means when "they" tell me that it is very challenging to get all information across all three shifts all the time? Why aren't staff reading reports or why aren't reports being given?)

As a family, we are no longer interested in quantity of days. We are interested in quality of days. Nan smiled when I told her and said, "Amen."

Amen indeed.

Picture reposted from Little Green Boat


  1. "Amen!"

    This brought tears.
    You are such a caring Granddaughter.
    Hugs to You and Nan.

    I spent countless hours with my Father in Law when he was in skilled care. Being an advocate for the patient may not make you popular but when done with respect and genuine caring you do gain respect. Good for you!!!!

    Becky K.

    Becky K.

  2. Thank goodness for you Vee....and other patient advocates out there. It seems the one size fits all approach is standard operating procedure.

    Hugs to you and Nana...

  3. I've been backtracking thru your posts trying to catch up with all that's been going on with you my dear friend...I know it makes you quite angry when you feel that the people responsible for taking care of your Nana are not up to snuff. It got so bad with Mama that we contacted the board/over all nursing homes in our state to get them investigated! Hopefully our endevours improved things for all the clients that followed! We'll be putting your precious Nana on our prayer list!
    And yes, I'm so happy for my tea cozy!!! Made me feel quite cheerful, lol...I have a couple of cookbooks to send you, will eventually get them to the mailbox...I'm so bad...sigh...

  4. I pray that when I find myself in the same situation as your Nan that my grandchildren will love and care for me as you do for yours.

  5. I think it's a true measure of faith when you realize that quantity of days is not as important as quality. Sometimes we get that mixed up, as though this is all there is. Thank God your grandmother has a granddaughter who is watching out for her well-being.

  6. As our family members age, we become their voice! Thank goodness Nan has you to speak what she is unable. What a blessing you are for her...keep talking! Bless you today!

  7. "We are interested in quality of days."

    And "they" heard you!!!

    Well, let's say, some doctor heard you, and duly gave his orders. Now of course, there is the issue of the "challenge" to get all information, across all three shifts... Every 24 hours...

    I wish all of you, well...

  8. Oh and something I finally thought of! A few days ago, you posted a picture of your three Aunts and your Mother. I take it, all 4 of these ladies are sisters.

    If so...

    Why are you, and your Mother before you, the only ones with any responsibility to/for Nan????

  9. No, Aunt Amelia. My aunts are my father's sisters. But, my Aunt Ess and Uncle Bee have been very supportive and helpful taking my mother to many appointments and visiting often so I could devote myself to Nan's care. One aunt lives in a mid-Atlantic state and the other lives up north. Two of my aunts are well into their 80s; My Aunt Ess is the whippersnapper just nine years older than I.

  10. We had a terrible time with my aunt's nursing home and finally had to move her. We reported them to the state without much help. I feel sorry for the people in there who don't have family. You're doing what's right Dee!

  11. You did good Vee!! It must be so frustrating. Quality over quantity is how it should be.
    Hang in there. Prayers for and yours daily from me.

  12. Well done, Vee. I know what you're saying loud and clear. We are dealing with these issues, too. Thank goodness, my MIL is easy to deal with, however, just keeping the staff aware of her needs and communicating with each other is a momumental task. She runs out of Depends and doesn't know to ask. She leaves her walker in the dining room and they don't take it back to her. They can't get her to shower and they WONT go through her clothes and see what needs washing cuz she hangs them back up after wearing them.

    We go by just about every single day to check on her & try to go at random times. WE wind up doing her laundry. We are private pay and I'm about to blow my top! The administrator is very kind and so are the staff people, but communication between the nursing home, the staff, the rehab, the hospital, the primary care doctor is a NIGHTMARE!

    YOu're so right - it's all about Quality, Vee. Good job - Nan is so blessed to have you!

  13. You are such a good advocate for your Nan, Vee! She is so lucky to have you looking out for her.

    There is so many "rules and regulations" in medicine and health care, many brought about because facilities are so conscious about not being sued for malpractice. One area where there have been quite a few law suits brought against health care facilities includes negligence for not providing adequate nutrition and hydration.
    In most cases these rules and regulations are looking out for the best interest of the patient, as we all know there have been many cases of maltreatment in the past, but sadly it has also has created an atmosphere of conforming to rules and bypassing the patients desires, such as the case of your nan who probably does not want to eat the same bland, pureed, but nutritionally fortified meal 3x a day.

    When my mother-in-law was in a nursing home in the last stages of dementia we brought her meals every day and had to hand feed her. Her regular tray came as usual but we ignored it or just used the ice cream or jello from it while we gave Nonna the soft pastas and soups she enjoyed from her past. The nursing home recorded that she was being fed by family and that it was approved by the doctor.

    As far as shifts not getting the same news .... that can be easily solved by talking to the head nurse and having the patients care plan flagged in some way to draw attention to the issue. Staffing is always an issue in care facilities and very often there is a parade of outside agency workers, per diems, part time helpers, etc., as part of the staff. By having your request flagged on your Nan's individual care plan you can hope that the successive caretakers will see your wishes. It really is the responsibility of the nurse in charge for each shift to pass that info on, but again it is better to be in writing and flagged so each successive charge person will see it.

    I hope these suggestions will help! You can even make up a nice sign and place it in your Nan's room with her meal wishes written on it! Sometimes a simple thing like that will be helpful. We did that with my MIL so the staff would put her radio on the Italian channel for her and they were nice about doing it.

    Keeping Nan and your family in my prayers!

  14. A truly poignant post, Vee. And what a loving, caring granddaughter you are. Nan is blessed to have you in her life.


  15. My heart goes out to you. Stand your ground. Her days should be filled with QUALITY! I have learned to really speak my peace when caring for my mom. I had some doctors shaking in their boots. But I can say she had a beautiful life to the very end. She was peaceful and happy. So hang in there. You are wonderful.

  16. I feel for your situation and I am glad that you feel you were heard. I hope things change for the better. WHen Dad was in the nursing home, I remember Mum's infinite frustration with something all the time - glasses going missing, getting the same tomato slop he would not eat over and over again, pj pants unlabelled and missing, glasses getting broken, seatbelts on wheelchairs not working again and again (escaping), terrible diet, no alternate diet for people who don't like xyz, shifts not knowing how much he ate or when, no one giving him Ensure to drink when he didn't eat all day, no one sitting to see that he ate if Mum wasn't there, rashes nto being dealt with, unshaven at 3pm, soiled clothes, spills on shirts that are never changed hours after meal time, you name it. She was constantly advocating. From full-time caregiver to full-time advocate. I don't know how she did it and how families like you do it. I am spellbound with admiration.

    When I am old and infirm and childless, I will likely not have an advocate. Can you imagine the mess if she didn't have you?

    Hang in there. xo Terri

  17. Amen to quality of days! Bless you for being such a wonderful advocate for your Nan. We went through very similar issues with my mom, so I know exactly what you are talking about. It's beyond comprehension that ALL of the staff cannot get on the same page and just care for people like they would want their loved ones cared for.

  18. oh, i loved that "amen!"

    this post reveals as much about your
    devotion for your grandmother as i
    have ever seen anywhere.

    hopefully, her little boat will sail
    smoother and happier now.


  19. Vee, I hope I have a granddaughter like you someday.

  20. OH FOR HEAVEN SAKE. Did anyone ever think of a note to others? A bulletin board? A computer alert?

    Are we like groceries, to be shelved, then ignored 'til our due date is up?

    Speak out! That is what I did for my Mom and Grand.

    Love and keep going,


  21. Very well done Vee! What a wonderful granddaughter you are. Your nan is blessed ♥

  22. I have often wondered at how seniors at 70, 80, even 90 years of age, who have settled into a dietary and eating style all their own, have to conform to specified regulations, having to eat meals they wouldn't chose and that bring them little or no enjoyment in what years they have left. They made it this far on their choice of foods...it seems they should have a say in what is put before them.

  23. Geri-care blogs are publishing the dialogs concerning "best practices" that need revising for elderly patients (such as state required pap smears on 95 year olds with dementia fercryingoutloud.)
    My RN daughter says no one should ever be in a hospital or care setting without a family member close at hand. Yet there are so many people estranged from family or outliving their family. Might that be the next mission field for the church?


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