We lost ALTCS………………… Arizona’s version of Medicaid. You see, no one who is actually Middle Class (that means you) can afford quality nursing home care when the time comes…………….
A good nursing home can run around $3,000-$4,000 a month. That’s a lot of green. Frankly, I don’t know how people do it without aid from the state. Anyway, avoiding the gory details, we lost our insurance and had to reapply for ALTCS again. The process is long, tedious, detailed and incredible stressful. So needless-to-say, when I found out we were dropped, I went home, sat on my sofa and cried. I contemplated leaping out my window…………….. I didn’t want to go through this process again. I didn’t want to have to deal with this……………… yet again.
How could this have happened? I know how it happened. I don’t want to get into details. It only stresses me out.
I will say, that situation was the beginning of my end…………… I’m over it.
September is World Alzheimer’s Awareness Month, and the entire month is dedicated to awareness. Awareness of this horrible disease………………. or at least one aspect of it: Alzheimer’s disease (in small print: and other related dementias).
I struggled to do my part this year. I tweeted. I wrote Six Word Memoirs about her disease. I turned the My Demented Mom Facebook page purple.
Clearly, I didn’t do that much. Nothing especially worth while. I didn’t skydive like some advocates. I struggled to churn out my story in six words………………..
I mean, why bother?
I’m well aware of the effects of this disease…………….. or rather, frontotemporal dementia a.k.a, “the other related dementia”………….. and let’s face it, if you don’t have a parent, friend or spouse with the disease, you probably don’t care that much about it…………… Sure, you’ll pay it lip service because that’s what nice people do. But it’t not top of mind for you……………. you don’t write emails to politicians pleading with them to do something about this disease that likely WILL affect someone you know and love…………. in 10-20 years. It’s OK. I understand. Truly. Do you think Sjorgren’s Syndrome is top of mind for me? Do you think I own a T-shirt? The answer is no.
So, here I am telling people my story. I have been since 2007 I think. But it’s getting harder and harder to write about it. I’m tired of fighting it. I’m tried of trying to make YOU care about me.
It’s funny how people forget about you……………… about HER. My mom’s been sleeping a lot so we’ve missed Mass these past few weeks……………. no phone calls. No visits to the house. No one seems too worried.
She could have died and no one would even know.
And don’t think attending her funeral will absolve you of years of absence.
So, yes. I’m angry. Tired. Frustrated. Frazzled. Irritable. Stressed out.
I’m sick of this disease. I’m tired of seeing it rape my mother’s mind………….. and the worst part is, she’s physically healthy. I have to watch this thing eat away at her gray matter………. but it won’t take her out.
Her dementia is gnawing away at her, and will continue to do so until she’s a listless mass of human flesh with a heartbeat. What will God do with her soul then?
So here we are……… playing a waiting game with the state. Hoping things will work out because, well, they have to. She has to go to a nursing home. It’s time.
This disease has cheated my mom out of her life. It has robbed my dad of his life………….. and peace of mind. It has forced me, more than once, to make sacrifices and hard choices. I started life over in 2009 with little money, no job and two cats so I could be here with my family, to participate in this grotesque life experience.
Now guess what?
I’m over it.
Oh Kathy. Thanks for writing your feelings again girl. I’m here for you and know you will find the strength to go on, you always do, you have to. You are a strong daughter and please keep writing it all out. We need you. Everyone loves you and I pray for you, your Mom and your family.
I understand your pain…destroyed lives; absent church ‘friends’; financial fear; people who don’t really care; watching those who do care hurting; inability to cope any more; the pain that never, never goes away…
I don’t know you, but I follow your blog, and I care.
I reached the stage you are at in the Spring of this year. Dad is now in a dementia home. My heart is broken. Mum’s heart is broken. Dad’s heart would be broken if he knew about it…and I’m sure is broken on some level. His spirit broke in hospital…
My Mum is still at home with dementia, but needing increasing care. No insurance, no annuity, no state help…no other family around. Mum & Dad’s hard-earned life savings pouring away at a breathtaking rate and their house at risk…
We will get through it, somehow. Changed forever, and maybe in pain forever, but in their honour we’ll get through it.
And we’ll keep talking about dementia…
My only advice is to take any offer of help available and keep the rest of your life occupied with people and things you love…and keep writing when you feel able.
With warmest wishes,
There aren’t words, really.
I just found your blog and want to thank you for it. My mother was diagnosed with frontal lobe dementia at age 55 in 2006. I was pregnant with my second child. My mother’s brain had been changing for several years before the diagnosis but I didn’t want to believe it could be dementia in her early 50s. I tried everything, switching some of her meds, getting her on supplements, constantly scouring the internet for cures, until I finally, years later accepted her fate (and mine as her daughter). I have one sibling who is not present in my mother’s life and has not been for decades so I feel like my stepdad and I are in this alone. It’s true that no one really understands unless this happens to one of their very close loved ones. I have had very little sympathy from people although I consider her dementia far worse than any cancer diagnosis could have been. It is the longest goodbye, and it is torture.
She has progressed to somewhere around stage 6b perhaps. Severe dementia, needs help doing everything. I have OCD about germs so the hygiene/poo issues have been tough on me. Bless my stepfather’s heart, he has taken good care of her and is very patient with her. What I used to find so annoying about him (his boringness and love of a dull, repetitive life) have now become attributes as he cares for my mother with much patience and acceptance. I have two little ones so it’s been hard for me to help out as much as I feel I should. I feel my stepfather should have a break. My marriage is dissolving and he feels I should move in with them but I have reservations about subjecting my 4 and 7 years olds to living with a severely demented woman. She gets agitated many times, has called them terrible names, and even struck my youngest once. She also used to love cats and I had to bring my cat to live with them when I moved and she now pushes him off of her and is simply annoyed with his presence. On the other hand we still do see her heart of gold shine sometimes and are reminded that she is still the loving, sensitive woman she always has been. One day I decided to brave it and take her out to a restaurant for lunch. I ordered her lentil soup, and old favorite of hers, and thought it would be easy for her to eat. Hamburgers and things like that have been impossible for her to handle for years now. The spoon of soup never made it to her mouth and instead she was tilting it before it got to her mouth and most of it ended up on her despite my tucking a napkin in her collar. After awhile she just stopped eating but I knew she was not full. She just perhaps was aware that she couldn’t do it properly. People stared enough as it was, I didn’t think I could deal witht he stares if I were to feed her the soup, not to mention I didn’t know if she would be embarrassed by that. She still has her moments of pride and declares often that she does NOT have dementia.
That lunch date was the last one I would ever have with her. I felt it was time to stop doing those things. I have gone out to restaurants with her and my stepfather, kids and husband, and it has gotten to the point she always cries there, or reaches far across the table to take someone’s drink that is three seats down, and when she is told that is not her drink and her drink is right here, she gets very offended and feels slighted for the rest of the meal, often with many heartwrenching tears, and of course, the stares of everyone around us who couldn’t have the slightest clue what is going on with such a young looking woman. She still gets her hair dyed brownish-red and still looks younger than her 60 years. But her mind is gone, and her body is breaking down, mostly her joints and bad knees. I feel terrible to admit that many times I’d rather she went to the Lord already. She sits and weeps all day long, signs that her disease is advancing. Trying to perk her up is a monumental challenge but it has been done, so we still try, but it’s hard. She is starting to believe she is missing out on things and that people are doing things without her even though she was there at whatever activity she believes she was left out of. It breaks my heart to see that she believes we could be capable of doing this to her, but I have to always remind myself she is not responsible for her actions or words and she simply doesn’t know what she is saying anymore. It’s not really the same woman we all knew and loved. It’s just portions of her brain on autopilot while other portions have atrophied and shrunk into nothingness. She looks the same except the look in her eyes. It is mostly a pained look anymore, or a look of blankness. The latter of course being so much more preferable to the former.
I relate to the several pages of entries I’ve read here. I feel cheated out of a grandmother for my children. I feel angry that she waited so long to have grandchildren and now that I’ve given her the only ones she will ever have, she cannot enjoy them, and I cannot enjoy her enjoying them, and I have lost my best friend, my mother, my rock. I don’t have a lot of friends so it’s been even harder on me. The ones I do have don’t understand. I had to move overseas recently for my husband’s work and I think some of them wondered how I could possibly leave her. The guilt has gotten to me and I am likely going to return to the U.S. next spring where of course I will have to once again immerse myself in the pain of witnessing firsthand the devastation and sheer evilness of this disease. I must admit that part of me was happy to run away. I am not near as strong as my stepfather. Seeing her more often was breaking me down more. I have struggled with depression for almost a decade, depression which I spiraled deeper into as my mother spiraled deeper into her dementia. My husband’s father is on a rapid decline with severe COPD and emphysema at age 70, so my husband is dealing with his own loss as his father’s health declines. He has not been a great support for me through this. He has dealt with a depressed wife, financial struggles, and his dad’s problems so I know he has a full plate too but I truly feel I’m on my own with this. Even my stepfather, for all his greatness, isn’t handling things the way I think he should. He still takes my mom to church but she is often unkempt looking or he will allow her to wear tennis shoes with a skirt. She forgets how to sit on a toilet seat and it can challenging simply to help her sit down on one, then sometimes she can’t go and after 10 minutes of waiting outside the stall I go in to help her with her underwear and pants and instructing her how to wash her hands, but she doesn’t know anything sometimes, not even how to turn on the faucet, certainly not how to push the soap pump, and I just wonder if it isn’t time to keep her home.
I know what my stepfather is going through as her full time caregiver must be tremendously difficult and lonely. My mother hates bathing now and so many times she smells, but my stepfather can’t always get her to agree to a shower. She wipes herself somewhat and always throws the tissue in the wastebasket for all to see. She doesn’t wash her hands afterwards unless instructed, and I don’t see him always caring about this, and he thinks my kids and I should move in. The moment I step foot in their house, my OCD self wants to disinfect everything. I can only imagine how stressed I’d be living there with my two kids. My stepfather, as anyone would, does lose his cool with her at times and she is intolerant of this. He is very loving towards her and very good to her, but once in awhile he seems to forget she is demented and wants her to do something she is incapable of. Drama ensues, tears flow, and sometimes my mother looks into my eyes and pleads with me, “help me”. I wish I could help her, I would walk to the ends of the earth if a cure might be waiting there, I would do so much to bring my mom back, not for me so much, but just to release her from the horrible prison her mind must be trapping her in. To end her suffering. I guess that’s what people don’t understand until it happens to their parent, that it’s because we love them so much that we want them to be called home, I have been through much in life, so many painful things, but nothing could ever touch the misery of having a parent with dementia, especially when they are young like my mother, and yours. I always thought this happened to people in their 80s and 90s. I never knew someone could get it so young. She had to take an early retirement, never did get to enjoy all that she worked so hard for her entire life. Her husband was also cheated of that. 30 years of hard work and dedication to a company only to have everything stolen away from you – your wife, your retirement, your golden years together enjoying yur grandchildren, traveling, in short, your life – by a hideous, demonic disease with no cure.
Thanks for listening to my story. Thanks for writing about it. Reading this blog certainly made me feel not so alone for the first time in a long time. We are young women, dealing with something that is so unnatural, some product of the modern world that steals mothers, fathers, grandparents, dreams, lives, time, happiness, and so much more. After dealing with this now for about 8 years, 5 of those where the changes were very obvious, I have become somewhat numb, and somewhat bitter. I always said I’d never put my mother in a home, but that was before I ever knew what this disease truly is and what it does to people. I will cross that bridge when I get there, but for now, my heart goes out to all of you out there going through this nightmare. We can help each other by sharing our stories, and I think we can give strength to each other. Community is essential to get through this with sanity. A community of people who know the pain, the struggle, the accomplishment of getting through another day.
Thanks for letting me share, and please, don’t stop writing. Sometimes writing is that shoulder we need when no one is around.
Thank you for deleting a heartfelt post. I will take my empathies elsewhere.
Tx… you know
Im sorry…. this disease does suck… most days i have no words and it just hurts.
I’m sorry you’re upset. i only just got on to look at comments. i did not delete your thoughts, which i appreciate you sharing… i only just got on to go through the comments.
Thank you so much for your amazing note…. i’m just really tired. i cant imagine my life without this disease… but god, i cant wait til its over with.
I understand your anger. My mother is only a year into this. She has been diagnosed with Lewy Body Dementia. She is still functioning, still knows me, but I know eventually that will change and I too will struggle with the anger.
thank you for your understanding and i’m sorry about your mom’s diagnosis…. i hope the blog can offer you some support along the way… i truly appreciate your support and good luck with things. remember to always take care of you.