So Far Away

Posted on: April 8th, 2016 by
16

At the rehab center, I am shocked by the stranger in my father’s room.

It is my father.

***

My dad’s dementia has progressed so rapidly, so markedly that he is now a stranger to my family. He still knows who we are, but it’s like his very essence – that spark that makes him who he really has been throughout his life – is gone.

Oh, he’s technically still my dad and my mom’s husband. But for several years now, my mom was alone before she was physically alone.

At least they still went ballroom dancing twice a week; they were always good at dancing together. Until his hip broke in December.

Now my mom must learn to dance alone.

“How do you make a meal for one?” she asks me.

She has never before lived alone. She lived with her parents until she married young. Now that he was recently transferred to a permanent place for dementia and Alzheimer’s patients, they are apart.

“You can freeze food in one-person portions,” I say.

She is lost and cries to me on the phone. I wish I could just fly to Florida whenever she needs me. But she’s so far away. So I become a vessel for her pain.

I don’t cry with her. I don’t know why because I do cry alone. Perhaps I feel I must not fall apart when she’s falling apart.

Oddly, even though I’ve never been in my mom’s situation, I sort of understand. I know what it’s like to have my husband transform into a stranger. I’ve experienced the death of a relationship – albeit under different circumstances – and intensely grieved this death. I also had to learn to be alone.

My dad’s been on medication for dementia and for his Parkinson’s disease, but neither medication gives a rat’s ass that it has done nothing for these conditions. Neither do the doctors. He’s just one more old, frail, demented Florida patient to them. They don’t return my calls even though my mom has given them written consent to talk with me.

My mom is easily confused by medical jargon (who wouldn’t be?) and she has difficulty understanding and communicating what medical personnel tell her. So I’m her proxy, making these phone calls. I don’t mind making them.

But this is what I do mind:

The hospital social worker who deliberately doesn’t return my calls. I call her at least three times during the time my mom is in the same hospital visiting my father a few days after his third hip surgery. I call my mom and tell her to go to this social worker’s office, which she does. The social worker is in her office, admitting to my mom that she received my calls but isn’t calling me back. And don’t get me started about the rehab social worker who won’t return my calls until I call her boss and make a stink over this stinky situation.

I could go on and on about the rude, crude way my parents have been treated by the medical and social work “professionals” during a most stressful period of my parents’ lives, but I won’t.

Mini-rant over.

My dad has so many things wrong with him, the odds of his long-term survival, I think, are low.

While I sit next to him at the rehab center where he is recovering from his physical injury, he is so far away.

There he is, all hunched over in his wheelchair, staring down into space and unable or unwilling to lift his head when my grieving mom, says, “Beth is here to see you. You know Beth?”

“Yes, she’s my daughter,” says my dad blankly, with slurred speech.

“Hi dad,” I say, feigning calm.

No answer.

Then in a few minutes, he starts talking gibberish to my mom, who tells him to lift up his head and look at me. After her constant cajoling, he looks up at her and forces a smile, which disappears as quickly as it came. Then his head drops down again, where it remains for the rest of our visit.

I am losing my father. My dad is already gone.

Gone. Gone. Gone.

And my dad’s condition is only going to get worse.

Until he’s gone.

And so, as I write this during yet another sleepless night, I still know that cancer is shitty. But I’ve come to realize that dementia is right up there on the list of top shitty diseases. Dementia steals people from us, as we helplessly watch them wither away mentally, spiritually, and physically.

And I can’t help but wonder whether I will share my father’s fate. I no longer worry only about cancer. I don’t want to become smothered by dementia, and I certainly don’t want to be a burden to my daughter.

My dad and his only granddaughter

My dad and his only granddaughter

At this point, in my sleep-deprived brain, the song “So far Away” by Carole King runs rampant:

“So far away
Doesn’t anybody stay in one place anymore
It would be so fine to see your face at my door
Doesn’t help to know you’re just time away
Long ago I reached for you and there you stood
Holding you again could only do me good
Oh, how I wish I could
But you’re so far away…”

Have you known/Do you know someone with some sort of dementia?

Have you ever lost someone to this condition?

Do you have any advice on how my family and I could best cope through this?

My dad and mom

My dad and mom


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16 Responses to So Far Away

  1. Alli had this to say about that:

    This is a very difficult time and I do empathize with your family.. My mother had Aids related dementia that came on so suddenly we were all shocked She would be poking and shooing bugs away that were not there one minute then just as suddenly had moments of lucidity. One day it was like the lights all went out She no longer could recognize anyone She remained that way till her death a couple of months later. My bio-father also had dementia related to Alzheimer’s His was over a period of a year. He would sit by the window and just look out Yet he was clear about the war, He knew when he was a POW held in a German Camp his escape yet day to day he was oblivious..You have to have a ot of patience because it can wear you down. Talk with him read to him treat him the same don’t talk about him in front of others sometimes there’s that small light that he could understand. The Social Workers seem like callous imbeciles but be on top of them all the time. You are now your fathers advocate…though he may not be present mentally he’s still here physically….
    Good Luck Beth….. Seek out help contact organizations, talk to other families There is no shame in asking for help.. Unfortunately my step-dad who will be 89 in June is experiencing early onset dementia too…..He also had a hip injury was in hospital
    .
    Love Alli XX

    • Beth L. Gainer had this to say about that:

      Alli,

      Thank you so much for your kindness. I’m so sorry your mom and dad have suffered so much. I’m so sorry for all you and your family has endured.

      Interesting that your biological father was a POW. My dad escaped the Nazis, and unfortunately that was another trauma to his mind.

      I will seek out help and advocate for my dad. The social workers are “callous imbeciles,” as you put it so well. As soon as I get my energy back, I’ll be making sure they do their jobs.

  2. Lori Marx-Rubiner had this to say about that:

    Such a poignant post, Beth. We lost my father in law to Alzheimer’s, and so I share your sense of the “long goodbye” that ensues. He recognized some family until the very end, but the second generation got muddled. We were happy for him that he seemed quite content in his final months, spending much of his time watching old TV movies and sleeping. He was able to stay at home, where those close to him could oversee his live-in care.

    But there is nothing easy, ever, about being among the dying. Since my MBC diagnosis one of my most significant challenges has been to exist in the world if the living (read those who still believe they are or could be immortal) as someone who knows she’s not. I make the most of every day, I don’t lie in my deathbed waiting, but I also can’t fool myself.

    So I hope that the urgency to share experiences with him while he is still alive can be met despite the distance, and that you can focus on all you have gained from having him in your life – as well as all you have given him.

    Love and blessings to each of you and you continue down your path…

    Lori

    • Beth L. Gainer had this to say about that:

      Lori,

      Thank you for your very supportive comment. Yes, the “long goodbye” is very upsetting and scary. I’m glad your father-in-law’s final months found him content.

      Regarding your living with MBC, I wish with all my heart that you have a long, joyful life. You have a realistic view on the world, knowing you are very mortal, but going on with life.

      Thank you for the blessings and for reminding me that sharing experiences with him while he is still alive is still so very important. While there is physical distance between us, I do plan to visit him regularly and make the most of our time together.

  3. Elissa Malcohn had this to say about that:

    (((Big Hugs)))
    I’ve been a caregiver since 2001. My caree has brain damage; the word “dementia” has appeared in doctor’s notes but is not listed as an official diagnosis.

    These sites have helped me:

    http://www.caregiving.com — very active grassroots network. Holds #carechat tweet chats on alternate Sunday nights. Has podcasts, webinars, forums, groups, chats, and other resources.

    http://thecaregiverspace.org/ — another excellent grassroots network. Also has webinars, forums, etc.

    http://www.caregiver.com — more corporate than the other two but also a good source of support. Sponsors one-day Fearless Caregiver Conferences across the US, free to family caregivers. I attended one just outside Orlando in 2011.

    I am so sorry you and your parents are getting such crass treatment from the so-called “professionals.” Some of the ones treating my caree have been real doozies (others have been wonderful) — learning how to advocate for her has taught me how to advocate for myself as a cancer patient.

    I used Advo-Connection (http://advoconnection.com/) to connect a friend with a private patient advocate. These advocates work for and are paid by the patient (or patient rep), not the facility or corporation. The one working with my friend helped get him out of an awful place (I’m 1000+ miles away, but I witnessed some very unprofessional behavior over the phone and reported the nurse).

    Good luck with everything. My heart goes out to you all.

    • Beth L. Gainer had this to say about that:

      Elissa, thank you so much for all these wonderful resources. I will certainly check them out.

      The patient advocate idea seems like a great one. Folks like my parents can certainly benefit from a patient advocate.

      Good for you for reporting the unprofessional nurse and for being a caregiver. I used to be a caregiver, so I know how very difficult it is.

      Thank you for your support and the virtual hugs.

  4. Scott Johnson had this to say about that:

    Beth, really sorry to hear about your Dad. My father-in-law drifted away and it was awful to watch. This is hard to say but I think our brains disconnect from the world towards the end. Being polite or having considerations for others stops mattering. We learn social skills and then forget them as the world closes down to just ME that we are in touch with at the end.

    Your Dad’s behaviour now isn’t personal. His ability to make sense is altered and he doesn’t know how to make it right so he closes down or gets frustrated. It’s like being very, very tired. (Been through it myself young enough to come mostly back to “normal”).

    As for the social workers, it’s their JOB to care for people. If they feel put out, they can get another job. Alli is right, find some help or support. Maybe the cancer groups can direct you to a group?

    Take care of yourself too.
    Scott

    • Beth L. Gainer had this to say about that:

      Scott, thank you for your insightful comment. You are right: my dad’s behavior isn’t personal, and he cannot help it.

      It’s such a difficult thing to watch, as you know all-too-personally.

      The social workers have been less than stellar. I don’t know why people become social workers if they don’t want to care for people. Yes, they might get burned out, but that’s no reason to stop doing their job.

      And trust me, I will make sure my parents are treated with dignity or respect, or there will be consequences for whoever treats them poorly.

      Thank you so much for your comment.

  5. Kathi had this to say about that:

    Oh, Beth, my heart just aches for you. Like you, I hate cancer, but honestly, sometimes I think I hate dementia AND Parkinson’s disease even more when I see what my patients and their families go through. My mother did not have dementia, but her mental illness progressed as she got older, and that, too, felt like she was lost to me long before she died. There have been some good links posted already, and then there are organizations for Alzheimer’s & Parkinson’s that have local chapters, as well as national, which may be helpful.

    I don’t know what part of Florida your parents live in, but I have to say that my mom was also in Florida during the last five years of her life, and I found that dealing with the healthcare system there, compared to what I was used to here in southern New England, was an exercise in frustration. I, too, dealt with idiotic social workers and a total asshat of a doctor who were either rude or did not return my phone calls. That would not have happened here, I can tell you. It made me crazy. Even though I was my mother’s emergency contact & power of attorney, I remember once that my mother was hospitalized and no one even notified me. I found out because some poor clerk in the billing department called to confirm some of my mother’s details. She was horrified that no one had contacted me. I had hoped I might have gotten my mother back up here in her last few years so she could be nearby, but that didn’t happen. I remember that every single day of her last five years, I had to remind myself to hang onto to my sanity and take care of myself so I would not completely lose it. It was grueling. I got used to having to call and insist on talking to the social worker’s boss, or the Florida department of elderly affairs, or others, to get some answers.

    Sending you love, my friend. I wish I could hug you in person. xoxo, Kathi

    • Beth L. Gainer had this to say about that:

      Hi Kathi,

      I guess a cyberhug will have to do for now. I so appreciate your sending me good wishes during this so-difficult time in my family’s life.

      My parents are not far from West Palm Beach. Yes, the quality of the healthcare and social services are appalling. I totally understand your fury at these incompetant individuals.

      I sadly can believe that nobody notified you that your mom was hospitalized. Nobody notified us my dad went to rehab from the hospital. We found out when my mom called the hospital to see how he was doing before heading over to see him!

      I will be checking out all the resources; thank goodness there are so many.

      I’m sorry you and your mom had to endure such suffering, Kathi. Sending you love and hugs back.

  6. Rebecca had this to say about that:

    Beth, I am so sorry about your dad. I’ve never known someone dealing with dementia but I am aware of the difficulties associated with this illness.

    I found these two sites with helpful information. I am sure you are probably familiar with some of this information already.

    https://www.caregiver.org/caregivers-guide-understanding-dementia-behaviors

    http://www.dementia.com/coping-with.html

    I wish I can give you a big hug right now. I’ll be thinking of you and your family.
    Please know that I am here if you need to talk.xo

    • Beth L. Gainer had this to say about that:

      Rebecca,

      Thank you so much for the resources. I’m adding them to my Resources list.

      Yes, I could use a hug, and I’m so lucky that there’s a virtual community of real friends, who care so much about me. Thank you for being there for me. xoxo

  7. Lisa DeFerrari had this to say about that:

    Beth, I’m so sorry that you and your family are going through this very tough situation. I lost both my father and my stepmother to dementia. She had been diagnosed with Alzheimer’s while he had something that progressed more slowly. The medicines that were prescribed for dementia did not help either of them. When we looked into stopping medications that weren’t helping, we were told that the dementia could actually become worse if the medications were stopped. This is another area where more research and much better treatments are desperately needed.

    The biggest challenge for us I think was navigating the system and trying to ensure the best possible and most appropriate care for them. Issues around communications with medical professionals happened sometimes even when people seemed to have the best of intentions. The suggestion above about connecting with a private patient advocate sounds like a great one to look into. We also found the Alzheimer’s Association to be helpful for information about resources in our local area for patient and family support.

    Sending hugs,
    Lisa

    • Beth L. Gainer had this to say about that:

      Lisa, thank you for your support. It seems that so many of us deal with dementia in elderly parents. Yes, navigating the system is really tricky.

      A private patient advocate sounds really good to me. I’m going to check it out, as well as support resources in my parents’ area.

  8. Nancy's Point had this to say about that:

    Hi Beth,
    This post tugs at my heart, as do the comments shared here. It’s just so damn hard to be in your situation. And then to be so far away on top of it. I’m sorry you have to deal with all of these complex and highly emotional issues. To say it’s challenging is a vast understatement. Witnessing my mother’s suffering was grueling on many levels, but her mind was pretty much unaffected until the very end. Somehow when a disease or condition grabs hold of our dear one’s mind, it’s just that much more horrible. Do your best. Love your parents. Love yourself. Love your sweet Ari. Cherish all the moments because even the really tough ones can come to be treasures later on. Sending love and hugs your way, dear friend. xo

    • Beth L. Gainer had this to say about that:

      Nancy, I’m so encouraged by your caring words. I will cherish whatever moments I can with my loved ones. In December, when my dad was doing better, Arielle fed him his dinner. He was capable of eating on his own, but he enjoyed the attention, and my sweet girl enjoyed helping him. I took pictures of this and will always keep them.

      Losing a loved one is horrible under any circumstances. I’m so sorry that your mother and your family suffered so much.

      Thank you for the love and hugs.

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