A Letter to Those Businesses And Professionals Who Make Dementia Even More Agonizing

Dear hospice and nursing home (names of providers removed because I have enough problems, frankly),

Thank you for making late/end stage dementia even more awful by not coordinating your care of my mom, by failing to communicate with me, by making me feel like I’m making poor decisions on her behalf, by one day telling me, no, she can’t feel hunger (hospice) and the next day, telling me, well, she could feel hungry (home)Thank you hospice and nursing home for your conflicting care and for not informing your staff of little changes. Thank you nursing home for ignoring me month after month when I begged you to lower the dosage of her psych medications……………………. it was good to see that you finally took action after she fell flat on her face because she was so zonked out. Thank you for the confusion, thank you for making me feel like the bad guy. Thank you for making me re-tell the story of how we’ve been treated over the last several years by psychiatrists who would dope up my mom to keep her from screaming (yes, this is how we treat our demented elderly, folks). Thank you for reminding me that I am alone in this. Thank you for making it clear that this — dementia and long term care — is a business and a lucrative one at that (especially if you go the private pay-only route).

Thank you knocking me down yesterday……………….. because now I’m back up on my feet. Slightly bloodied (nice kick to the heart, by the way), and ready to get the shit kicked out of me yet again, because I am right and you are wrong.

I know my mother.

One more thing: Thank you for reminding me that part of my duty is to one day help government work toward and eventually craft death with dignity legislation………………… we are so quick to fight for life, but we lack the courage to face death and say ENOUGH.

To slowly die sitting in your own feces, unable to eat, speak, walk or do anything that makes us human, does not guarantee you a place in heaven. It simply serves as a reminder that we are still living in dark ages.

I expect to be burned at the stake for that.

Sincerely,

The daughter who asks too many questions, the daughter who fights and pushes so she can get her mom the right care, the daughter who has endured the stares and the whispers, the daughter who diagnosed her own mom when the doctors failed to, the daughter who has lost a lot ( A LOT) of sleep over the past 8 years, the daughter who visits her mom almost daily, the daughter who holds her mom’s hand, the daughter who makes the really hard decisions no one ever wants to make, the daughter who is more often than not dismissed by medical professionals, the daughter who has to fight so her mother can have just a drop of dignity.

18 Comments

  1. How do I choose the adequate words to convey my sympathy and understanding for your situation? The key word in your post, for me, was Dignity. Each day that I rise and sleep, that is one of my primary goals ~ dignity. Keep pushing, keep caring. You are a generous soul.

  2. To the Daughter who will be remembered for all of her love and sacrifice, to the Daughter who will, because of her experience, will make a difference in the area of death and dying, to the Daughter who, when her Mom does finally cross, will feel the arms of her Mother surrounding her and saying, “Thank you.” You are helping not only your Mother, but those who are also walking in your shoes, and those who will. God Bless You.

  3. “we are so quick to fight for life, but we lack the courage to face death and say ENOUGH.”

    So true and so well put. Thanks for speaking out for those who cannot.

  4. Hi Kathy,
    Thanks so much for sharing your blog. I love it & I totally relate to it… I have experienced & written about similar frustrating situations with Nursing Facilities, Doctors, & the bureaucratic BS.
    Your blog also looks really good, I’m a visual person… so it makes it easier for me to drawn into your stories.
    Check out my blog, I think you’ll enjoy it. I try to add some humor whule showing the reality & coping of being a Caregiver. http://www.dementia-mama-drama.com/
    Vin

  5. I sincerely hope you and your Mom will be at peace soon. My mom is at a private pay corporate memory care unit. Placing her there is a mistake. I wish I knew then what I know now. Fancy decor and a private apartment mean nothing to a person with advancing vascular dementia. Quality trained staff and compassion are priceless…unfortunately $6K a month has not come close to meeting her needs at this facility. I feel hopeless, helpless and angry.

  6. Yes..Im too in the same Spot in Life…My Dear Mother can no longer speak…I see her stuggle in her Pretty Eye’s….It’s a Killler….But they the Hospice have my my Mother On Oxgen.and Morphine..and her Bill’s keep going up higher….I know that My Mother Wanted to die…many Year’s ago….but now Im seeing a Lawyer…My Mother Keep’s pulling the Tube’s away…so yep Seein her Attorney this week…xx

  7. My mother in law was in a home for our “respite”. She is on hospice, end stage. When she has been at a nursing home ( the last one) in North Texas
    the hospice nurse ordered several drugs for her of which we did not approve and do not give her at home. Sleeping pills and mood stabilizers around the clock that she did not need. She sleeps through the night anyway most nights and has gotten past agitation. It rarely happens now.
    But the drugs knocked her in the dirt. When we picked her up she was a zombie. She slept for 2 days and it took days to get her back to at least a better stage of end stage. I think they give them the drugs so they do not have to deal with them. Its easier. But I wanted to kick the nurses ass. Why do they think they know so much more than those of us who are the caregivers 24/7 I so appreciate your blog here.

  8. I am sorry you and your Mum are going through this. You are a good daughter. I’m behind you in this journey and afraid of the future.
    Thinking of both of you – if it’s OK with you, I will pray.
    Blessings
    Jenny, Australia

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