By: Revanche

Dementia in the Family: The long road to nowhere

January 31, 2010

She changes by the hour. When she’s industrious, bustling around the kitchen, it might be in the guise of a young housewife eager to learn.  Sometimes she’s the seasoned veteran barking at my dad for hovering nearby anxiously in case she should slip, trip or burn herself.  Then she turns around and she’s confused and angry. Why has he been keeping her at home?  She needs to go grocery shopping. She needs to buy things, anything, right now.  Why won’t he take her?  They didn’t just go that morning, she would remember if they had!  He’s just trying to keep her prisoner. He’s just trying to hide money from her.  Fine. Fine! Don’t take me, I hate you!

She sulks.

Then, slyly, she sneaks out the front door, racing for freedom.  *pat pat pat pat* Her slippers slap the concrete and she makes good the escape and exults in tricking her captor.  She stops to talk to the neighbor.  Nonsense and gibberish pour out, the neighbor nods understandingly and pats her shoulder. As soon as Mom heads to exit the cul-de-sac, the neighbor knocks on the door: “She’s out again!”

Another weary race to hunt her down. This time she’s in a grocery store trying to sneak a toy past the cashier, that time she wandered into a strange neighborhood and couldn’t remember where she wanted to go.  Still others she’s trying to find a park where she can play with the other kids.

“She’s getting worse,” my dad admits. “I’m struggling to keep track of her, I’m hardly sleeping, she can’t be left alone and everything causes a fight. Your mom’s getting worse.” 
Her personality has morphed from a no-nonsense, hard-working go-getter to a fractured, broken soul.  The fire that once burned in her, driving her from a dirt-poor childhood to leave her country, build a life from the ground up, raising two children and supporting an entrepreneurial husband’s morale and carrying more burdens than any single right-hand woman should have to … that fire’s still there.  But it flares and sputters through a shattered prism of reality. 
For the past three years, my family’s been struggling with the reality of living with a family member developing dementia.  It’s the latest in a series of health problems, beginning with diabetes that went undiagnosed for years which led to a number of complications including high blood pressure, strokes, damaged eyesight, impaired nerve function. She also developed kidney problems, an inability to sleep, and neurological problems (constant vertigo, impaired judgment, short and long term memory loss).  Congruent with my dad’s inability to hold a job and her guilt over my supporting the family, we added anxiety and depression to an already volatile mix.

Every day is a new struggle.  It’s not just Sisyphean, trying to keep the boulder moving forward from day to day without letting it slip and crush us all; it’s also a Promethean epic of facing a rotating set of behaviors that range from destructive, to adolescent, to vehement worrying. She’s still a mother at heart, that instinct still lives but it lashes out destructively, pathetically, wishfully.

The woman I live with is my mom, but not really.  This isn’t the person who raised me.  But she’ll always be my mother so I’ll always provide for her.

__________________________________

My dad’s suffering just as much from the depression and anxieties of being a full time caretaker as she is from being the patient.

He’s had to turn down job offers with a decent salary but no benefits because according to the Social Security folks, if he earns as much as $600 a month, she will lose all her disability benefits AND her medical care.  The latter is critical because as much as I would prefer to purchase independent health insurance for her, no insurance company will touch her.  Even if I could afford upwards of $1500/month, which I can’t right now, she wouldn’t be covered for any of her existing conditions.

Family members have counseled him to consider divorcing her so that he can separate his finances from hers and maybe start to dig himself out of this hole without causing her to lose all her care.  He can’t wrap his mind around the thought; I can’t believe that my family has come to that.

Until I find a job that pays enough to make more permanent arrangements, it’s inevitable she’ll eventually need more than my dad’s care, I’m researching respite care options to give him a break.

Through the California Caregivers Resource Centers, I’m looking for respite care options. I’m willing to pay reasonable rates for the assistance – I don’t expect a free ride – but given how cash-strapped California is, I’m not sure that they’re even still offering services at any price.

For those in the Los Angeles area, the Los Angeles Caregiver Resource Center came very highly recommended by a local psychologist.  They provide some excellent free services to caregivers of  “adults with brain impairing conditions, such as Alzheimer’s disease, stroke, Parkinson’s and traumatic brain injury.”

Karen was kind enough to send me this link to this Help Guide for Understanding Respite Care. From there I found the Family Caregiver Alliance (FCA): National Center on Caregiving.

The FCA page provides links to the Area Agencies on Aging (AAA) which service the state on a county level.  They’ve also got links to a number of other resources:
     General Information & Assistance
     Services for Family Caregivers
     Services for Care Receivers Living at Home
     Resources on Living Arrangements for Care Recipients
     Government Health & Disability Programs
     Legal Help & Advocacy
     Disease-Specific Organizations
     Family Caregiver Organizations

I’ve got the phone numbers for our local county, and will call to see what services are provided in this area.

As riddled with error, delay and obfuscation the county health system has been, I’m foolish to hope for better from the caregiving resources that are also state-funded, but that’s all I’ve got left right now.  Just a little bit of hope.

That’s all I can do on this front for now, wish me luck tomorrow.

27 Responses to “Dementia in the Family: The long road to nowhere”

  1. eemusings says:

    Oh I’m so sorry to hear that. I don’t know what to say.

    I’m so glad that you’re there, that you’re around to do what you can.

    Good luck with tomorrow.

  2. I’m so sorry for what you are going through.

    For my grandmother, the solution was a religious nursing home, that was not really a nursing home. Don’t underestimate what clergy can do and who they know. They might have your solution.

  3. Danielle says:

    Thinking of you during this difficult time. Such a hard situation.

  4. L.A. Daze says:

    *Big hug*. If you ever want to get out and take a breather, let me know. I think you can tell by my blog that i’m not some psycho/weirdo stalker person. Sometimes you just need to get away from it, even if it’s only for a couple of hours.

  5. Ugh. This is all so hard. I sympathize. You are smart to reach out and see what caregiver and respite care resources are available to you. My mom and I did it all on our own, with me taking days and her taking nights, and I don’t recommend that route. The bizarre legal maneuvers you and your dad are being told to consider are a testimony to the absurdity of the situation, but they’re also no comfort, no fun, and, ultimately, an imperfect solution. Keep writing, if it helps. I feel for you.

  6. I can only imagine how hard this is on you and your dad. I wish you much luck.

  7. Sense says:

    I’m sorry mostly that your mom is in the state she is in…but I’m also sorry that divorce could be considered a good option for your dad to take care of his family! Two separate but related tragedies.

    It must be hard for your mom, but even harder for you and your dad (and brother, too) to go through this with her.

    What a nightmare. Good on you for keeping up the hope. Hugs and love and even more hope from NZ.

  8. Frudoc says:

    Hi, I read your blog frequently, and have only now realized that you’re in LA, and struggling with these family situations. I’m sorry. I don’t have personal experience, but a few resources that I’ve recommended to others:
    http://www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias/dp/0801885094/ref=sr_1_6?ie=UTF8&s=books&qid=1265002039&sr=8-6
    (Great book for caregivers)

    And Rancho Los Amigos has a dementia clinic run by neurologists. The main downtown Los Angeles County Hospital also has a good general neurology clinic with a few staff attendings with dementia/neurodegenerative subspecialty training, but unfortunately we do not have dedicated dementia clinic. The private hospital USC University Hospital does, but obviously it will take additional fees.
    Geriatric Neurobehavior and Alzheimer Center
    Rancho Los Amigos National Rehabilitation Center
    7601 E. Imperial Hwy
    Downey, CA 90242
    562-401-8130
    http://geroweb.usc.edu/adrc/locations/

    I hope this helps!

  9. I’m sorry that this has happened to her. There is not enough attention paid to mental health challenges and dementia, it takes such a toll and is often more invisible to the naked eye. I too care for someone in my family and it is very very hard work. (((hugs)))

  10. This is terrible.

    You know…now, I know this sounds dreadful, but it might be worth considering: A friend whose father suffered from Parkinson’s and dementia faced a similar problem. To avoid pauperizing the mother (who was VERY far from wealthy to begin with!), my friend persuaded his mother to divorce his father. The result was that she was no longer responsible for his bills, and so he became eligible for VA care. She did not, of course, actually leave him: she simply became legally no longer his wife.

    A strategy along these lines might allow your dad to get a job while keeping her on SS and disability.

    It’s hideously cruel for people to be forced to such extremes by our third-rate medical system. However, whatever works, works… It could be worth discussing with a lawyer.

  11. 444 says:

    I’m sorry to hear of this difficult situation. I hope some relief will be found soon so that everyone can cope more effectively with these challenges.

  12. I can’t offer any solid financial advice, but I recognize that this is a truly difficult situation. One of my co-workers is currently struggling with her mother’s worsening MS. As I told her, you must remain strong for both of you.

  13. Grace. says:

    Sad. Hard. And no good answers in sight.

    I am surprised folks are advocating divorce when a Legal Separation might be a better financial course without the social stigma of a divorce. I think you and your father should get ahold of an elderlaw attorney (if you haven’t already) to better understand the options when it comes to paying for your mother’s care.

  14. Karen says:

    I hope it went well today. *hugs*

  15. Anonymous says:

    Sweet girl, you’re carrying a heavy load. Make sure you go slowly, focus on the day and not on the horizon. 🙂

  16. This is an amazing blog post — thank you so much for sharing this.

    I wish I had something more useful to say. This is so hard and unfair, but you hold it all together like it is just a part of life. And it is, I guess, but an awfully hard part.

  17. I think about you daily. Sending you and your family massive hugs, prayers and healing vibes. Please, please let me know if I can do anything for you.

  18. Revanche says:

    @eemusings, Princess of everything, Danielle, RainyDaySaver, 444, Investing Newbie, Anonymous 10:18, everyone: Thank you very much for your outpouring of love and support. It’s appreciated more than you know.

    @Dog: appreciate the suggestion. I know another part of the family had relied on clergy for their son who suffers from bipolar disorder, that might be a lead as well.

    @L.A.Daze: 🙂 You’re a funny girl, of course I know you’re not a stalker! Thank you for the offer, I may well take you up on that.

    @Dogfood Provider: Writing helps me get past the tears. Through them, but then past them. And you’re very right, the suggested maneuvers are more painful to consider than comforting.

    @Sense: Re: two separate tragedies: Agreed, 100%. Can’t even tell you what hurts me more. I’m a horrid person that in all of this, I’m so angry at my brother. He’s not contributed to this household in months and months, and he’s not helping at all. It’s yet another layer of frustration.

    @Frudoc: Thank you very much for the resource links, I’ve saved them for my further research. And thank you for chiming in, I don’t hear from you often.

    @notesfromthefrugaltrenches: Among all the other things you take care of, I had no idea you were also responsible in a similar situation. (((hugs))

    @Funnyaboutmoney: I’ve got a bit of a thing where I can understand that other people may have to do this but it’s hideously upsetting to consider on a personal level. My gut reaction is that no matter what, I WILL FIND A WAY. Impractical, but I’ve made it this far with them, hard to imagine “giving up” now.

    Having said that, I also worry that in her state of mind, she might (though I think she has suggested this avenue herself before and been summarily dismissed) actually believe that he was leaving her for greener pastures and deteriorate further. The blame mechanism plays a significant role in her behaviors, much of which centers on him.
    *sigh* Maybe it’s an answer. I just .. don’t know.

    @Grace: No good answers anywhere except the one where I pick up and keep on keeping on to make sure they’re provided for. I’m still able. As for legal separation, see above. :}

    @Karen: thank you. Updates to come when we know more.

    @stackingpennies: I .. thank you. I didn’t think I was holding it together at ALL but I appreciate your thinking I am. :}

    @Rina: ((((hugs))) Y’all are there. That’s priceless.

  19. Red says:

    Revanche, I’m so sorry for what you’re going through. My thoughts are with you and your family.

  20. Oh I hope things get better for you. My grandma had Dementia as well, such a terrible disease. You and your dad are doing great!! Keep it up and I really hope that your brother starts to help out as well.

  21. Wow. I cannot imagine what you must be going through. But you must be an incredibly strong person.

    My thoughts are with you and your family.

    Thank you for sharing this with us.

  22. Sunflowers says:

    I’m a little late in responding to this, and I’m basically echoing what everyone else said… but I just wanted you to know my thoughts are with you… and I’m so sorry. 🙁

  23. Revanche says:

    @Red: Truly appreciated.

    @Girl Makes Cents: I’m sorry you went through this as well… thanks for the support.

    @Frugal Dreamer: We just do the best we can with what we have. Thank you.

    @Sunflowers: Thank you, very much.

  24. Shtinkykat says:

    Thank you so much for your kind words and support. Although your mom and my dad have the same condition, it does seem like your mom’s condition is further advanced. As weird as this may sound, your parents are very lucky. Not many parents have such a good-hearted, generous, kind and compassionate daughter like you. And as you have offered to me, if there’s any help or support that I can offer, please let me know as well. *hugs*

  25. […] We never got around to planning the reception. Life and grief and work and everything got in the way. I still can’t really bring myself to want to plan one, yet.  I had the worst times thinking about planning it while Mom was struggling with losing her very self. […]

  26. […] decade ago, dementia stole my mother’s body, and gave it to a stranger. We buried her years later, but on this anniversary of Mom’s passing, the loss feels as fresh […]

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