What Makes Me Angry? Dementia.

by Nancy Wurtzel on March 28, 2012

I first noticed signs of my mother’s dementia during a trip home to Minnesota about four years ago.  I remember feeling panicked.  You see, my dad had Alzheimer’s disease and needed full-time care for years.  That long, awful journey took a terrible toll on him as well as my mom, who was his primary care giver.  My sisters and I watched helplessly as my dad turned into a shell of a person.

Now I was envisioning a similar journey ahead for my mother.

Upon returning to my home in California, I had dinner with a friend.  Relaying my fears about my Mom’s disturbing behavior, it was suddenly all too much and I began to cry.

Instinctively my friend reached over and patted my hand.  After a minute, she settled back in her chair and said, “I understand, Nancy. Yet, it could be a lot worse.  At least your Mom doesn’t have something really serious like cancer.”

I recall being stunned and feeling confused.

Later, I realized that her comment had actually made me very angry.   Yes, certainly cancer — and any serious disease — is horrible.  No one wants to battle any life-threatening illness.  However, many, many cancers are now curable or treatable.  Patients can often live cancer-free or in remission for a long time and maintain a good quality of life.

Dementia, on the other hand, is a slow, progressive, always-fatal disease.  There is never a chance for remission or “beating the odds.”  There is no cure or treatment to halt the disease.

Now that I’ve moved back to my tiny Minnesota hometown to help care for my Mom, I often think of my friend’s uninformed comment.  At the time, she was only trying to make me feel better, yet she obviously had no idea about the effects of this terrible disease.  No one close to her or in her family had suffered from dementia.

I’ve realized that without the first-hand experience, it is difficult to fully comprehend how dementia can ruin lives.

Dementia erases a person’s memory, changes their personality and takes away their dignity.  It places huge financial, physical and emotional burdens on families who must care for their loved ones – and, I should add, most of those care givers are women.  It’s a cruel, drawn-out death.

A friend recently called it “the worst disease, ever.”  She’s right.

I follow dementia and Alzheimer’s disease research quite closely.  In February, the administration announced its first national strategy to fight Alzheimer’s – the most common form of dementia.  Calling it “one of the most-feared health conditions” it outlined a program with the goal of finding effective treatments 2025.  However, I’ve since read that this effort is woefully underfunded.

From what I can tell, dementia research is splintered and we’re not close to a cure or even those effective treatments.  I shudder to think of what will happen as my generation, the baby boomers, ages and becomes more vulnerable to the disease.

There are more than 75 million baby boomers — our largest generation ever — and every seven seconds another boomer turns 60.

The clock is ticking.  We need a fully-funded, coordinated national effort or we face big troubles ahead.

Today, when I think about dementia, I still get angry.  How does it make you feel?

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{ 50 comments… read them below or add one }

1 Desperado May 26, 2013 at 11:54 pm

It is unbelievable. I live in a house of horror. My mother has dementia, and it is totally sucking the life right out of me. I cannot do anything, not one single thing for myself at all, this has totally consumed my entire existence. I had to give up my job that paid $55 an hour. Now I have no income at all because I have to stay at home 24/7 to babysit her. I can not leave her alone for 1 minute or she will find a way to hurt her self, burn her self, fall down and break a hip or leave massive bruises on herself. She constantly repeats herself, asking the same question over an over again, which I answer over and over again. She is constantly saying stuff like, “Death would be a blessing right now”, or, “If you put me in a nursing home I will find a way to kill myself”, or, “I wish I was dead”. I am so sick of hearing it. I tell her I love her, but I might as well be telling it to a stray dog, it has no meaning to her. She can’t remember what she said at the beginning of a sentence by the time she gets to the end of it. I have been doing this around the clock for almost a year, with no help or support group, and I have reached the point of severe burn-out. I can’t even leave her alone long enough to even try to go look for any type of support group. By the time this is overwith, I will probably be a good candidate for a mental health facility myself…..

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2 Anonymous June 17, 2014 at 1:35 pm

Desperado,

I know exactly how you feel.
I have to care for my mother, In my case I am just about retirement age. But it’s been ongoing for 4 years. And suck’s the life out of, may as well be talking to the wall, just….nightmare everyday. Much of what you said exactly parallel’s my situation.

I can’t bare the thought of putting my mother in a facility because you hear how poorly they take care of them/ even beaten the elderly. And I know they are very, very, very expensive. I also cannot go anywhere very often, my children help me so maybe once a week I can get out to do shopping which seems like a vacation. I have people come in 3 times a week which is paid for by the government. They wash her/ sponge bath her/ do exercises with her. That is a godsend in itself. It really isn’t easy. People who have not been through living with someone who has Dementia/Alzheimer’s ……They Just Have No, Zero, Idea at how terrible it is.

Hopefully my mother can pass away here at my home comfortably and in little to no pain. But my greatest fear is that she won’t be able to walk……then I have no choice, she will have to go into a facility. But in that scenario I’d get what used to be my life back. I always say I don’t know how one little old lady can require so much work.

I have heard they have things called Respite care so that you can get out for a day or two and do what you have to do or clear your head. Respite Care will send someone out or perhaps your loved one will go to their facility for the day etc.

Don’t feel bad about saying passing away would be a godsend. Those who care fore people with Severe Dementia I am sure have all had that thought. Especially when you are late 80’s-90’s and the person you once knew is no longer there. My mother has lost her grip on english and totally reverted to her original language. Makes it impossible for my husband or children to communicate with her. The 3 government workers get the odd word of english out of her, not much tho.

Try and stay strong, and don’t let yourself get burnt out…your no good to yourself or your parent if you do.
+ Your health.

Best of Luck. To you or anyone out there in the same / similar boat.

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3 Anonymous June 17, 2014 at 1:47 pm

Also

For anyone out there reading.

Accusations of Theft of money, belongings, this isn’t my room, where’s the bathroom, coming out of a room their bedroom or bathroom and them saying ” where is my bedroom/the washroom” is something that happens.

Fixation on certain rooms, or saying who is that person/man/woman in the mirror ( cover the mirror with a sheet) ….they sometimes are drawn like a moth to the flame with certain rooms.

Turning pictures upside down, hiding things, stashing them away in illogical spots, thinking that you are their sister, mother, asking is it time for school when they are in their 80’s+.

Many people revert to a time only from when they were young. Or the most significant part of their life. And then the rest even tho you may see it as significant in their life….they just don’t talk about.
Or saying i want to go home, i am taking a flight from here, bus, cab.

YOU HAVE TO REMEMBER………getting angry and yelling although your natural reaction does you no good and them.

You have to try and remember in many cases once it get’s really bad that you are dealing with someone who has the reasoning capability of a small child/infant much of the time.
Because if you challenge them or call them on things they will try and cover it up and have an excuse that makes no sense or just say nothing at all.

So if they get angry and say I WANNA GO HOME, take me out of here now. Say something like , ” ok, mom/dad….we’ll go tomorrow we can’t go right now the weather is bad out, the roads aren’t good, it’s too late nothings open whatever it may be. Indulge them and they will often forget.

That often is the harder reaction than just bursting out in anger…but believe it or not….it’s the more effective way of dealing with them. And even tho you may want to lock them in their room……we may have all thought of it….don’t do it.
Not a good idea at all for many reasons.

But try and appease them and remember whatever you said they are likely to forget anyway.

Also anything that is valuable like pictures and keepsakes that can’t be replaced….remove them from their room if they are fixated on them. If they question why they are not there come up with something.

You are now the parent. Funny how roles change.

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4 Samantha July 17, 2012 at 2:37 pm

Frustrated and incredibly sad, that’s how it makes me feel. My dad suffers from a pretty unkown form of Dementia- frontolobal which impacts his emotional and verbal skills. He constantly repeats himself and every time I go see him, he tells me how miserable he is in the Assisted Living facility I was forced to place him in after numerous falls landed him in the ER every week. I’m his Power of Attorney for Health and it is extremely difficult. It takes everything out of me to visit him and once I’m there it’s like emotional warfare that we constantly go through, I take a lot of abuse from him and I can’t talk to him or relate to him like I used to. I’m extremely protective over my 11 year old niece because God knows what’s going to come out of his mouth. My brother doesn’t have to go through what I do, in fact, they usually have nice visits. What I wouldn’t give for a nice visit- not normal, since he’s not ever going to be back to his old self- but, a nice visit without yelling and accusations and repeats of his misery.

I get angry when someone says at least he doesn’t have cancer or it could get worse. I want to yell at them- HOW? HOW CAN IT GET WORSE? YOU TELL ME HOW! Because it can’t. It is so incredibly difficult and I gave a lot of thought to the question would I rather him have a mental disease (Alzheimers, Dementia, etc) or a physical disease like cancer? The answer is always the physical kind. At least, he’d still have his mind. At least, we could talk. At least, he’d understand what was going on.
I had to tell my brother that I can’t go to visit Dad alone, it’s just too hard. I find myself not wanting to visit and feeling incredibly guilty for that. After every visit, I end up crying uncontrollably and swearing that I need to find some sort of support group which makes my family and my husband sad because they say they should be enough. But, it’s not.

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5 Pam April 15, 2012 at 11:14 am

As someone who suffered a brain aneurysm at 28 and subsequent surgery, I’ve been told that I am a strong candidate for some form of dementia. What do I do about it? I write — every day. I converse with others, I try to keep my mind active and learning, although I have to confess, my short term memory is now about five seconds long — and I keep a sense of humour.

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6 Nancy Wurtzel April 15, 2012 at 11:22 am

Pam, thanks for coming to read and for the comment…I really appreciate it. Sounds like you are staying on top of your cognitive ability. My sort-term memory is poor as well (I’m almost 57) and never can remember where I parked the car or what I have to get at the grocery store. A doctor told me it is more of a case of me not paying attention than anything else. However, when I cannot for the life of me remember what I had for lunch (and it is only 4PM) that does scare me. Hang in there and I wish you well.

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7 Phyllis Palm April 13, 2012 at 8:58 am

Nancy, I read your initial post again, and I realize we have not been dealing with the politicl issue of funding for Alzhiemer’s and related dementia research and support for sufferers and their caregivers.This is a part of what makes you angry, and me, too. I fear that our everyday stress takes so much of our emotional and financial effort that not much is left to be advocates for change.
I know the Alzheimer’s Association has circulated a petition for folks to sign in support of President Obama’s initiative for curingAlzheimer’s disease and that the allocated funding is insufficient. How can we, as front line caregivers, work to get some action accomplished that will make us feel better and support our goal??? Phyllis Palm, Author, Put That Knife Away- Alzheimer’s, Marriage and My Transformation from Wife to Caregiver

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8 Lorie Eber April 12, 2012 at 7:58 am

Hi,
I have a Dad who has been suffering from dementia for about 10 years. At this point, I don’t think it’s a burden for him. He lives in the moment (isn’t that what we should all be doing?) and is generally content. When he was cognitively intact he was angry most of the time. The pain now is on me comparing my real Dad to the person the wheelchair, who may or may not recognize me. I do grieve, but I also accept that fact that laughter and concentrating on what still brings him job is the best attitude.

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9 Nancy Wurtzel April 12, 2012 at 8:35 am

Lorie,
You are right…it’s probably a lot more difficult for you now than your Dad. We got to that point the last few years of my own dad’s life (he had Alz). My Mom still knows much of what is going on, but just can’t figure out so many other things. Almost like a war is going on in her brain. I see how hard she has to work every day. Good advice about the laughter. Appreciate you reading and come back again.

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10 Izzy April 9, 2012 at 11:55 am

Thank you for sharing your feelings on dementia. Like other commenters, I too have had some experience with this sad disease as my grandmother and some of her sisters suffered during their last years. One of the lessons I learned from that time was that arguing is pointless and that the best approach is to be gentle and kind in so far as we can while recognising that it is okay to feel frustrated and angry and helpless at the same time. Currently, I am seeing early signs begin to accelerate in another relative and am struggling between helping her to maintain independence and worrying about her care. My strategy is to stay calm, to observe, and to trust in my own judgment for when the time comes to intervene. There is lots of well meaning advice and a lot of misunderstanding of dementia – in the end, it’s best to be guided by love and by our own wisdom. You learn a lot of lessons by the time you get to 50 – don’t be afraid to trust yourself is the best advice that I can share.
Love and respect to everyone who is coping with this at the moment.
Izzy x

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11 Nancy Wurtzel April 9, 2012 at 12:14 pm

Hi Issy, What terrific advice you gave in your comment! Really, when I don’t follow my own inner voice and wisdom, I have found I regret it later. Thank you so very much for coming to read…please tell your friends about Dating Dementia. I write about a lot of subjects of interest to Baby Boomers.

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12 Melanie April 4, 2012 at 8:28 pm

I can’t think of any families I know that have not been affected by dementia.Help to treat, manage, or cure the disease is imperative. Caregivers themselves are at risk. I foresee a national crisis if we don’t make changes in research funding now.

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13 Nancy Wurtzel April 4, 2012 at 8:45 pm

Yes, I totally agree. Thanks for coming back to read, Melanie. I really appreciate it.

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14 Mark Eggleston April 4, 2012 at 12:15 pm

I have read most of the postings for this discussion. I heard as recently as last month that research is getting closer to stopping, and in some test cases, reversing dementia. The bad thing is that all the current testing is on lab animals and nothing ready for human trials yet. Keep the faith, help is coming at some point in the future. My wife and I cared for my mother with severe and progessing dementia for 8 years. It’s a long, steady decline of one’s health and mental awareness that rob’s us all of the people we new as active and vital not so long ago. Be that as is may, we all need to realize that this is a long term battle and we are not alone in this war. Support groups can help keep you informed. With some many stages and other bodily issues that come into play, the more you know ahead of time, the more accepting it can be to realize what is happening to our loved ones. At the risk of sounding like a commercial for my own company, there are non-medical home care providers that can come in to the persons home for as little as an hour a week to as much as 24/7 to help with so many daily activities. This takes a lot of stress off of the family caregivers and spouses. Home care companies can help keep the person stay home much longer and in some cases, eliminate admissions into assisted living or nursing homes. The national average annual spend for a nursing home is greater than $75,000 (Medicare only pays for the first 14 days following a hospital discharge), assisted living and memory care facilities average $45,000-65,000 annually. Home care companies national annual average is less than $25,000. With home care, the person can stay in their own home with their own possessions and be much happier and comfortable. If I would have know about home care in 2003 when I placed Mom in an assisted living, we could have kept her in her home for at least 3-4 more years at a fraction of the cost and much less stress on her.

For all those suffering this horrific disease and all those caring for their family members, please know that God is watching over and helping us all. Blessing to all of you.

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15 Nancy Wurtzel April 4, 2012 at 12:25 pm

Hi, Thanks for following the discussion and for your great comment. I’m amazed by the response to my postings and appreciate everyone sharing their journey. Please tell your friends and come back to read!

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16 Lynda Schrader April 3, 2012 at 4:32 pm

Fear and anger are two emotions I feel when thinking about dementia and Alzheimer’s. My Mom passed away last week after struggling with the disease for four years. “Will I grow up to be my mother?” now takes on a completely different tone. I hope your California friend never has to deal with this.

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17 Nancy Wurtzel April 3, 2012 at 4:59 pm

Dear Lynda, I’m so sorry for what you have gone through. I know it is so hard, having lost my dad, both grandmothers and some aunts and uncles to dementia. Honestly, I am so afraid I will get it, so I can totally relate to your post. Take care, Nancy

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18 Pat Gebes April 3, 2012 at 11:16 am

Nancy,
I understand so well having seen both of my parents wander into dementia. Unfortunately there isn’t a national celebrity who can grab this and run with it for securing financing. The closest is Michael J. Fox with Parkinson’s. Charlton Heston had it and I’m sure there are many other well know people with the disease. Unfortunately they aren’t in a position to use their celebrity to focus on this issue because they are no longer able. I do wonder from time to time if I will be one of those people who gradually fades out of life this way. I hope not for my children and grandchildren. How do we organize to get money for research for dementia and Alzheimer’s”?

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19 Nancy Wurtzel April 3, 2012 at 5:01 pm

You are right, we need a “celebrity” — someone like a Michael J. Fox (whom I really admire…and dementia is part of late-stage Parkinson’s) to come forward and carry the banner. I don’t know how to organize to get money for research, but I’m going to look into it. Thanks for reading and for the comment.

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20 Elaine Cahill April 3, 2012 at 8:41 am

Hello . I read your piece and understand your anger. I know people look at Dementia as life threatening, but the long process of stages , are not easily explained to well meaning friends. Even I tell myself , well it could be worse. It could be . But for you , me and other care givers , it is a slow process of sadness as well. I spend alot of time being angry at myself because I live 45 mins away, work full time, and it eats at me because I cannot be there every min. It effects my work performance and I know it, cause my mind is often there with my parents. And I have to mindfully slap myself out of it to carry on . It is exhausting to say the least. My father has lost his sight this year also, and he is trying desperately to carry on with his loss. My mother who is in early stages, and runs her head around in circles trying to keep everything the same for Dad’s sake. He is often correcting her to the point of her telling him to stop or she will stop talking . It is really a bit out of control because I understand , he won’t, my sister who lives far away, listens but is not able to speak to them openly. I have daughters who I am getting disappointed with somewhat because they have busy lives and could help a bit more, but it really is not fair for me to ask. So , I am here, reading and listening , and open to join in , cause I am caught in a triangle it feels and it feels like I can give no time to anything else but work, and my folks. Some people don’t get it, some do.
That is a tidbit of my story.
For you, I will say you have the tools from prior experience, rely on them. Your doing your best and maybe that is why this kind of site is here, for us . God Bless You.

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21 Nancy Wurtzel April 3, 2012 at 5:04 pm

Oh, my goodness. First, thank you for coming to read and for your comment. You really opened up and shared and I so appreciate it. It’s an awful experience, but be sure that you do ask for help or you will burn out badly. You sound like you are under tremendous stress. I’m looking to find a support group and I hope you can, too, as it might help. Hang in there!

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22 bob becker April 2, 2012 at 12:18 pm

my wife has dementia and it is very severe, right now she is in los robles hospital, her vitals are fine, but mentally she is in bad shape, no talking for the last two years, no eating since last week, comatoast most of the time, nowthe talk is of hospice. This is the worst disease , enjoy the good monents with your mom …..regards bob

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23 Nancy Wurtzel April 2, 2012 at 1:33 pm

Bob, Thinking of you…hang in there. Nancy

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24 joanna jenkins March 31, 2012 at 9:51 pm

This post hits close to home as both Alzheimer’s and dementia have impacted my family– It’s heartbreaking….. and yes, the lack of funding makes me very angry.
jj

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25 Nancy Wurtzel April 1, 2012 at 6:36 am

Thanks for coming to read, Joanna. I appreciate it very much!

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26 Selasie March 30, 2012 at 10:47 pm

My mum died this week early Thursday morning. I guess I knew this day will come and have been grieving for years before now but I still feel quite numb. In the end, she was a very pale shadow of her former lively vivacious self. I had a brother die of cancer and as painful as that was it was not as drawn out, undignified and totally devastating as this has been. We totally lost her years ago and what was left could not be described as my mum. It was so hard to see what she had become and as numb as I feel right now, I am happy she is free now.

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27 Nancy Wurtzel March 31, 2012 at 7:38 am

Selasie, Thank you so much for sharing your feelings about your Mum. You touched me (and I’m sure others) very deeply with your comment. I’m glad your Mum is free now and I hope you can heal as well, but I’m sure that it will take time. From what you wrote, you have certainly experienced the very worst of this horrible disease. I’ll be thinking of you and come back to let us know how you are doing. Sincerely, Nancy

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28 Sarah March 30, 2012 at 8:31 am

My grandmother had Parkinsons that included dementia. She faded into someone entirely unlike the Grandma I knew as a child. My father visited her daily and she would tell this “nice young man” how she appreciated him since her own son never came to see her. It breaks my heart to remember that even all these years later. I can’t think of much worse than dementia and it terrifies me that I will lose one of my own parents or other loved ones to this disease.

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29 Nancy Wurtzel March 30, 2012 at 9:48 am

Hi Sarah, Thanks for sharing your story. Come back again…

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30 Susan March 29, 2012 at 6:40 pm

And what is that “spell check” thing I keep hearing about.

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31 Susan March 29, 2012 at 6:39 pm

Based ont these responses, you spoke for many with this posting. I am so sad after talking with Mom and hearing her struggle to finds the words to express what she wants to say. It is truly heartbreaking. I can’t tell you enough times how strong and brave you and Barb have been to take this on- her care is the kind that tries to suck the life out of everything around it and you have to be so strong to survive it. Mom is fourtunate beyond words to have her daughters to love and care for her. And Dad would be impressed- and we know that was rare…

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32 Nancy Wurtzel March 29, 2012 at 8:21 pm

Thanks, Susan. That means a lot to me…

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33 Samantha March 29, 2012 at 4:31 pm

I’m sure your friend had honorable intentions but “the road to hell is paved with good intentions” and all that. Perhaps she doesn’t have any experience with dementia (or is living on Mercury) to think that losing your mind and memory does not trump cancer.
Yes, it’s all horrible. There’s no upside to having cancer but can any of us imagine anything more horrific than to be or watch someone we love lose who they are?
My heart goes out to you.

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34 Nancy Wurtzel March 29, 2012 at 4:50 pm

Yes, you are right. My friend didn’t know anything about dementia and had no personal experience.

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35 Carol Vallee March 29, 2012 at 2:17 pm

My mom passed away in 2008 after struggling with dementia for several years. It took away her speech, along with may other abilities. She loved talking with people and this was very sad for her. We were very close all of our lives and I was blessed – she never forgot me. (I have a tribute to her on my website – she gave me so much, so I needed to try to give a little back). My heart goes put to you, Nancy, and all of those dealing with the sadness of dementia/alzheimers. My comfort is knowing that Mom is having lovely conversations in Heaven at this very moment. I miss you Mom!! Carol

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36 Nancy Wurtzel March 29, 2012 at 4:51 pm

Thanks for coming to read, Carol, and for commenting. All the best to you.

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37 Kay Lorraine March 29, 2012 at 12:00 pm

Dementia is horrible. Fortunately, I don’t have any history of it in my family. But my husband’s family is a different story and he lives in dread fear every day (and I’m not exaggerating).

His grandmother on his mother’s side took care of her own mother who had advanced Alzheimer’s. It was the ugly kind where it makes you mean. Great-Grandma Maddy was so mean to Grandma Ruth. She was physically abusive and would hit her, etc. Grandma Ruth often said that she lived in fear that she would someday get Alzheimer’s and become just like her mother.

She did, sort of. She got Alzheimer’s, but instead of becoming mean, Ruth became so confused and reclusive that she had to be under 24 hour watch so that she didn’t set fire to the apartment. She no longer knew her husband. She had to be locked up because she wandered into the street. Eventually she died.

Her daughter, my mother-in-law, was terrified of getting Alzheimer’s. She obsessed about it for years. Eventually, of course, she did get it and spent the last 6 years of her life in a haze of anger and confusion. By the time her own husband died, we didn’t even bother to tell her. It would have only made her sad but she wouldn’t have known why she was sad and that would have manifested itself in more anger. No point. My mother-in-law died about three years ago.

Now every time my husband forgets why he went into a room or can’t think of a word, he breaks out in sweats. He lives in dread fear of ending up just like his mother, and her mother, and her mother before her.

I try to tell him that we ALL forget what we were looking for. We all misplace words. But there is no way to allay his fears. He has good reason to be afraid.

He isn’t angry as much as TERRIFIED!

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38 Nancy Wurtzel March 29, 2012 at 1:31 pm

Yes, I’m terrified, too. We all should be. Thanks so much for sharing your story, and I wish you the best!

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39 Sherrey Meyer March 29, 2012 at 11:21 am

Dementia takes many forms, and my husband and I are unfortunately getting acquainted with the second most common after Alzheimer’s. His brother, diagnosed with Parkinson’s about a year ago, has recently been diagnosed with a form of dementia that strikes Parkinson’s patients.

If Jim’s Parkinson’s were his only problem, life wouldn’t be difficult. But you see, he has Lewy body dementia. Lewy discovered the protein accumulations in the brain stem that cause Parkinson’s. In some Parkinson’s patients like Jim, those protein deposits break away and float into the brain, including the cortex effectively erasing cognitive skills, memory and so much more. In six months, we have seen Jim fade before us.

We are providing some caregiver assistance for his wife by traveling to their home about 5 hours away from us at least once, if not twice a month. We are fortunate to be retired and able to do this. My husband’s four other siblings (he’s the youngest of six) are unable to travel; we feel that God has called us to provide this assistance.

About your friend, you are correct in stating that she was “uninformed.” We actually had a family member say, “At least all Jim has is Parkinson’s.” I wish that was all he had. Jim has been called “hero” by my husband multiple times, and I’m watching my husband’s heart break as the Jim he knew disappears before him. Dementia isn’t an easy disease. We need to bring a greater awareness to the impact it has on the patient and the patient’s family.

God bless you for posting this today and for allowing us all to comment at length.

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40 Susan Sweet March 29, 2012 at 10:30 am

Nancy first a big hug to you . I know first hand what you are saying. Mama use to look at Aunt Oucie and say she could think of nothing worse than being a reader who was blind and deaf as Aunt Oucie was in her old age. To Mama that was the most horrible old age to spend.
Fast forward to Mama’s old age. I sat there looking at her with her one book. She would read it over and over again . I never knew how much she was getting from it .
To me Dementia is the worst diease on the planet . My beautiful educated , well read mother became this woman with a liontine look in her eye . A woman who taught Trig and Cal to future Nasa scientist who could not count to ten . The well dressed teacher who always matched perfectly who would put her underpants on over her slacks. The only redeeming grace is that hopefully she did not know all of this was happening .
Sadly this is the Grandmuther her grandson and granddaughter knew . They never knew the woman that danced in the rain instead of going to the storm cellar . The Mama who let me order every book I wanted on the Scholastic book order as she never said no to buying a book. The wife that learned to ride a dune buggy at the age of 60 . At least she didn’t have cancer? No she had the worst diease ever . My heart goes out to you and Katy and Susan . I know the path you follow.
Susan

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41 Nancy Wurtzel March 29, 2012 at 1:32 pm

Oh, my goodness, I had no idea, Susan. Thank you so much for coming to read and for sharing in your comment. Yes, it is the worst disease ever.

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42 Nadine Feldman March 29, 2012 at 9:40 am

How horrible that you and your family are going through this!

My grandmother had Alzheimer’s, and my last visit with her was incredibly sad. I didn’t know if she knew me or not, but she seemed stressed — she was unable to communicate, and it broke my heart to see her struggle to try.

I don’t understand why anyone would consider Alzheimer’s “not serious.” It devastates families and takes its toll over a long period of time. I wish I had some miraculous solution — but alas, all I can offer are virtual hugs.

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43 Nancy Wurtzel March 29, 2012 at 1:37 pm

Thank you! I’ll take any hugs I can get — even the virtual ones I appreciate you coming to read and leave a comment…please tell your friends about Dating Dementia.

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44 Maureen Kelly March 29, 2012 at 6:37 am

Nancy, I think what you are doing is great. I also know what you are going through must be taking a toll on you since you are really putting your life on hold. However, I would do the same thing. My Dad has dementia now (or at least so they call it), which we are told eventually will lead to alzheimer’s. It makes me very angry and sometimes I even feel that I take this anger out on him. He will forget things and I look at this man who used to be so strong and I forget how frail he is now, so I instantly say things like “Dad, you just said that or Dad, why are you not taking your pills!” I’m quickly reminded that he really does not remember when I see that blank stare back at me.

Keep up the fight and know that there are many of us out here that know what you are going through and we too would not wish this- or Cancer on anyone.

-Maureen
Atlanta

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45 Nancy Wurtzel March 29, 2012 at 1:40 pm

I can really relate to what you are sharing…it is hard to be understanding all of the time with a dementia patient. Thanks for coming to read — tell your friends about the Dating Dementia blog.

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46 Reticula March 29, 2012 at 12:05 am

I’m not really scared of any other disease. How dementia makes me feel? It terrifies me more than anything I can imagine happening to me. When I can’t remember somebody’s name or where I parked my van or if I miss an appointment….it terrifies me. People with cancer have hope. Dementia….I don’t want to be that and I certainly don’t want to do that to my kids.

One thing I do know though. Nothing could make me stop loving my daughter with all my heart and soul. I don’t need my mind for that. No matter who your mom becomes, that love is solid and real. I hope you can feel it.

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47 Nancy Wurtzel March 29, 2012 at 1:41 pm

Thank you for coming to read and commenting. I really do appreciate everyone’s support.

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48 Your Daughter March 28, 2012 at 8:46 pm

Sad.

I wish I had gotten to know Grandma Ann and Gramps.

I’m just glad Grandpa Lew never really had it.

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49 Nancy Wurtzel March 28, 2012 at 8:54 pm

Thanks, honey. Love you. M

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50 Nancy Wurtzel March 31, 2012 at 9:27 am

Hello! Thanks very much!

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