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Old 01-05-2006, 05:29 PM   #1
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Thank God I found you guys (RANT!)

Hello, I'm Tate.



I'm 24 years old and one caregiver for my grandmother who has alzheimer's disease.

Since we come from a really small family, it's just me and my mother.
This is her mother who has AD.

I've been caring for her with my mom for about 2 years. And some days are better than others.

Today has just been awful.

I was stressed from last night's episode, got little to no sleep, and was woken with bad news from a different side of my family very early.

Then I had to take care of her all the way up until now - 8:00 pm.

Running on about 3 hours of sleep and trying to handle an AD patient is a task for anyone. Don't recommend it.

As I was walking up the stairs - I realized that I should look online for a forum and I found you guys. In the 2 years that I've been doing this - the idea never crossed my mind, strangely.

My grandmother is a lovely woman and my memories of her when she was well are extremely special to me. She was a top of the line grandma.
I'm also extremely close to my own mother and I would do anything to help her through this time. She's determined, concretetly, not to place her mother in a care facility until she's exercised every other possible option.

My nerves are shot today though. I've looked for her purse (which she hides all over the house) at least 12 times. In two instances, I had to look for it about six or seven minutes after I last found it. Frustrating. I wish I could burn the purse.

But what's getting to me is her confusion. It's impossible to explain the most rational things to her. Some days this is better than others, but today is one of those days where she is angry and argumentive and restless.

I've fixed her breakfast, lunch, dinner, snacks, talked with her, visited with her, watched TV with her... etc. etc. etc.

But she won't seem to leave me alone for even a minute. To be frank, I was even trying to use the bathroom once and she stood at the door talking.

I guess where I had no sleep last night (about 3 hours MAX) I just am irritated today and it's a bad day for both of us because of it.

She won't quit asking me the same exact question. And it's 8:25pm as I type this and she's asked it ever since 3:00 pm today. Over and over and over and over and over and over. No answer I give her (even the truth) will satisfy her.

I eventually (something I rarely do, I'm extremely patient) broke down and began crying in front of her, begging her to listen to me clearly, and understand. She just nodded her little head and then called me crazy and began laughing - through my tears, I told her it wasn't funny. She said she knew it wasn't - but she didn't understand why I was upset - already forgetting what I plead with her and asked her.

Sorry to introduce myself in such a babyish sounding manner - but I just needed to vent this out and know that maybe someone else out there has dealt with the same feelings/occurences.

I know she can't help it - and I know that I can't always be the most patient grandson ever... but sometimes I just want to scream.

 
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Old 01-05-2006, 06:03 PM   #2
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Re: Thank God I found you guys (RANT!)

SO sorry that you have this to deal with at your age! Mercy, it's not like it's to be wished on anyone, of course.

It sounds to me like your grandmother is "shadowing" you and that's a common behavior in AD. Not fun for you, of course.

All of us are dealing with or have dealt with a loved one with AD. We hear you and completely understand your frustration, irritation, grief, and occasional anger that it's your grandmother who has this awful illness and you want her back like she was, immediately, please.

My mother had AD, starting at about age 84 or so. Yes, you could tell her something and she'd forget it in a blink. Mom forgot what the pronoun "you" can mean, that night means the sky is black (HOW do yo forget that???), what mail is important, how to make coffee, how to run her washing machine, and she bought 5 vacuum cleaners in 3 years. There is so much more, too.

Read the sticky titled 7 Stages of Alzheimer's at the top of this thread, copy, paste and print it so you have it to refer to. You and your mother are fighting a losing battle in trying to cope with sweet, ditsy grandma at home. Read through our many posts. You cannot stay awake 24/7 and that's how long your grandmother needs to be watched so she doesn't forget a pan on the stove and set the house on fire or something. It does help her that you and your mother are there to feed her good food and to keep her from driving her car. As these sweet souls forget things, they also forget to be careful. The aim becomes keeping them safe.

Does her doctor know how she's behaving? If not, give him a copy of the 7 Stages on which you've highlighted the behaviors you've seen in Grandma. She may benefit from an anti-depressant or an Alzheimer's medicine.

Be sure someone has her Durable Power of Attorney so medical, business, and other decisions can be made on her behalf since she cannot do for herself. At some point, it's too late for this as the lawyer who draws up the legal form must believe she understands what she's signing.

Something for your mother and you to talk over is that Grandma will get worse, much worse. Her name should be on the waiting list of a care facility that you and your mother like. Believe me, your grandmother won't care. My mother didn't even recognize me, her only child; or her church where she'd gone for 40 years; or her furniture that she'd had for 60 years. When in a locked unit, she thought she was on a cruise. Go figure. Your grandmother would not want you and your mother sacrificing your lives for her. Sadly, your love cannot make her better.

Well, I've given you an earful! Hope it's not too much. Come back anytime to rant, talk, ask questions, or whatever. We're in the thick of it or have survived. We understand.

Wishing your well! Barbara

 
Old 01-05-2006, 06:29 PM   #3
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Re: Thank God I found you guys (RANT!)

Thanks so much for the reply and information, Barbara, it means a lot.

I should have specified more in the thread.

Yes, she sees her doctor regularly - has the AD medication, etc.
He's aware of her symptoms. And she's on several medications.
My mother is as close to her mother as I am to her, it's one of those situations.

She just absolutely refuses to put her in a home. I know that my mom is hard-headed and won't do it until she MUST do it. Which knowing my mother well - may be never.

We sold Granny's houses (she owned 3) a year ago. She doesn't remember them. The money from that is in a different account that is not used - which my mom has set aside for nurse care in the later stages, to have granny be kept in our house until death.

My mom is the Power of Attorney.

My granny is in our home 24/7 and is NEVER left unattended.


Now, that I've said all that... here's the catch...

Being 24, and of course, having the right to my own decisions - sometimes I do feel like I have been stuck in this situation - feeling lots of guilt. In fact, I tried to move away last year and stayed gone for eight months at college but the guilt overwhelmed me until I moved back. I just couldn't do it.

Where I can see my mothers determination and respect her decisions- I can also see that my mother is trapped in this mental image of being a martyr of some kind. She did the same thing with her father (took care of him for 4 years until his death). She just was intensely close to both parents and is very defensive about any kind of help other than her own.

My mom does work and she works during the days. I stay at home with Granny. I feel sort of useless sometimes, in terms of society, feeling cut off ... etc. But as many times I've tried to leave here, I keep coming back.

Luckily, I do maintain freedom of some kinds. I make my own money and have friends and go out - but not as much as probably your average 24 year old.
One thing that does worry me as that after I left college - I've been removed from the insurance. God bless America.

My mother hasn't ever pressured me into it and often times tries to refuse my help and has cry sessions where she "doesn't want me to be dealing with it."
But, as her son, I don't know - I always think she needs me. No matter what.

Obviously, I've inherited their stubborness.

I'm in a strange stage right now - where I almost feel compelled to make a life-altering decision where I ignore my heart and go with my mind. It may be hard to do, but I'm in a transitional period, for sure. And I don't want to look back on my life later on and think I should have left to live my own life at 24.
Many of my friends encourage me to leave and say that I'm wasting my life... I just can't seem to.

 
Old 01-05-2006, 07:14 PM   #4
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Re: Thank God I found you guys (RANT!)

Dear Tate,

I too took care of an AD person, my Mom. I lived with her for 5 years and I know exactly how you feel. I too was awakened at night to be asked the same silly question I had answered all day. I too felt like climbing walls.

But I was already a grandmother myself, and in the last few years of my career as a teacher. I did make it to retirement before it became clear that Mom had to go somewhere else because I was all burnt out ... as it turned out she is now in a good nursing home and quite happy there.

BUT you are a young man, younger than my children. You are allowing someone else to make a martyr out of you. If you decide for yourself to sacrifice years of your life to being an unpaid eldercare person, that is one thing .. but your Mom seems to have decided it for you... or you feel obligated to do it ''to help her."

This is not a healthy situation for any of the 3 of you. Grandma needs to be cared for by professionals in a home especially suited to deal with AD patients, and with the proceeds of her sold houses she can pay for the best of care.

Your Mom needs to get a life (I do not mean it in a sarcastic way at all) and outside of her job, make friends, take up a hobby, meet interesting people, while continuing to visit her mother in the NH and be a good daughter to her.

You my dear friend need to finish college without a single iota of guilt feelings, get a career, make a life for yourself, fall in love, marry and have children ... if that is what you want.

Maybe you would be interested in psychology or nursing or the legalities of eldercare (elderlawyer, paralegal assistant in eldercare law) or something else that uses your AD care experience as a background, and which you may be well suited for. But on the other hand you may be a talented artist, writer - you express yourself very well, says this retired teacher - or musician and are just putting your whole life on 'hold' until your grandma passes away. This is not a healthy situation, in my opinion.

Speaking as a woman older than your Mom (most likely; my oldest child is 36) I can only say go out and pursue your dreams .. your Grandma has lived her life and she would be the fist one to tell you just that, if she were thinking rationally!

I wish you God's blessing as you face hard choices. It may seem easier to do nothing, but the status quo is not helping anybody!

Love and prayers,

Martha

Last edited by Martha H; 01-05-2006 at 07:24 PM. Reason: sp

 
Old 01-05-2006, 08:04 PM   #5
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Re: Thank God I found you guys (RANT!)

Hi again, Tate,

I hear you on the guilt! I should have mentioned that this is a guilt-free zone! We all just do the best we can and that's all anyone can do. Before I found this bunch and learned about guilt-free, I had to move my widowed Mom into an assisted living facility because I lived 1/2 way across the continent. I chose to leave Mom in her home city so her older sister (age 87) could still visit her. To work off my guilt, I stenciled around Mom's new bedroom using the same paint and design I'd used in her bedroom at her home and did other stencils in her new living room and kitchenette. I cried a lot and went back home to my husband and sons. Mom quite liked the many people to talk to, her sunny apartment with her furniture, and the good food. I think the socialization did her good.

I did the best I could. 6 months later we moved to Mom's hometown, but she was too far gone to live with us. Sad, but true.

I have to echo Martha in saying you need to be out of there. This is what Grandma's money is for. A person should be hired to be with Grandma while your mother works. If your mother is determined to keep her mother at home, she needs to make the arrangements. There are many agencies that have licensed and bonded caregivers that can be hired. You mother can look in the yellow pages to find them. If there's a delay in someone being available, many facilities have day care or respite care and Grandma can be there while a caregiver is found. THIS IS NOT YOUR JOB!!!

Read the post about "I just cannot put MIL in a NH" or some similar title. This will show you your mom isn't the only one with high hopes. Heaven help them! You can also read our replies.

If there is late registration at school, do that tonight. You can talk to us from college and let your mom do her thing. Your grandma would want you in school.

Get moving! NO GUILT! Barbara

Last edited by BarbaraH; 01-05-2006 at 08:38 PM.

 
Old 01-05-2006, 09:32 PM   #6
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Re: Thank God I found you guys (RANT!)

Hi Tate,

I agree with everything that Martha and Barbara have said!!!!! You are too young to stay at home caring for your grandmother - actually no one should stay at home and care for your grandmother, she should be in a Alzheimers Care Home where people will keep her well, safe and fed. And like they said, she will probably not know the difference in a month or two. You and your mom can go and visit her, whenever you want. Do Not Feel Guilty for getting on with your own life. I know that your Gran would want it that way!

Sorry, about the ?s on the other post. I read the posts backward, and read that one before this one! :> So, sometimes, I repeat myself and ask unneeded questions. I do not know how you have lasted this long - watching after your Grandma all day long!!! I could not do it and I would not do it. It would actually drive me crazy!

Take care and come back.

Love, Wannabe

 
Old 01-06-2006, 12:38 AM   #7
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Re: Thank God I found you guys (RANT!)

I appreciate all the responses, very useful. I think I actually joined this board - honestly, to try and find out ways to cope with it better for ME.
Until now, I've only been to a few "talk therapy" sessions with other care-givers (most of them told me I was too young, too haha) and watched a few videos on the disease/how to care... read books.

I think, more than anything, my mother will have to figure it out she can't do it alone for herself.
She really does ignore just about any advice. Countless people in our town that she knows who have dealt with parents or siblings have tried...

Honestly I have thought a few times that if I left and she didn't have me to rely on - she would be forced to place her. As cruel as that may seem sometimes I think it would help my mom and my grandma out in the long run.

She keeps saying, "Once she forgets who I am - that's when I'll do it..."
She seems convinced that if she places her while she stills know her, she coul never forgive herself.

I'll keep you guys posted on what happens and join in on any discussions.
Glad to be here!

 
Old 01-06-2006, 03:32 AM   #8
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Re: Thank God I found you guys (RANT!)

Oh, my gosh, Tate! I am 37, and feel too young to be facing this with MIL. Twenty-four is definitely too young! You need to be out on your own. Go get that college degree. You are going to need it in today's world.

I am the author of the post "I just can't put MIL in a nh yet," so i know how your mom feels. There are some big differences, though. My MIL is still quite independent in that she does not need round the clock care--she does not roam at night. My MIL loses things, but she does not hide them. Also, I am a stay-at-home mom so I am not giving up a life to be a caregiver.

Your grandma is very needy, and she would do well in a nh. I think that by staying in the home, you are enabling your mom to play martyr. Leave, stay away, keep contact at a minimum while you establish your life. My guess is that you keep coming back home because when you are gone, you keep one foot in the door. Go out and find yourself. The twenties are all about discovering who YOU are before you settle down and create a family. In fact, you owe this to your future family!

Ineedanap

 
Old 01-06-2006, 08:47 AM   #9
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Re: Thank God I found you guys (RANT!)

Hi Tate! Welcome!

I don't have anything else to add to what the others have said except one thing. If your mom is worried about the money later on in the AD process and this is why she's not utilizing the funds now for your grandmother's care, she should look into Medicaid. Of course, your grandmother wouldn't be eligible now and probably wouldn't be for a couple of years or so. Your mother would have to spend down your grandmother's funds and there is a time limit between when her homes were sold and when she would be able to apply for Medicaid assuming that her income qualifies her. What better way to spend down the funds than to get in home care for her? Your mom could work. You could go back to school and grandma could stay home as long as possible. It's a win win situation.

And if you feel guilty about leaving, could you apply to a college closer to home so you can visit often if you wish?

The longer you and your mom go on like this, the worse it's going to get for all of you. None of us are martyrs although many of us try to be. We ALL wear down and often wait till we become physically ill from all the stress and demands of 24/7 caregiving.

You said you and your mother are both stubborn. It's not stubborness. It''s love, compassion, wanting to do what's right for our loved ones and everything else that makes up the caregiver in us. It's part of our make up. It's who we are. We don't like to admit we need help because if we admit that, we feel that we failed our loved one. And that hurts.

The hardest part of all of this for me is to try and change some of those feelings. I'm seeing more and more through the people on this board and their experiences (read my thread on when to decide whether to place your loved one in assisted living or a nh) that many times, the AD person does much better than we expected once placed in a nh or assisted living facility.

I understand your mother's need to take care of her mother. That's why I'm here in my dad's home. I suspect that within 1-2 years, we'll be faced with that choice. The reason I started that thread I mentioned was to get an idea of what to expect when I'm faced with that situation. I expected the answers to my questions to be somewhere in between dread and gloom and doom. What I am getting out of it for the most part is much more positive than I anticipated. That thread is something I'll draw courage and strength from when I face that awful decision.

And take it from an old lady (I'm 43 ), the older you get, the harder it is to go back to school. Go back, young man!

Love, Barb
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Old 01-07-2006, 12:08 PM   #10
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Re: Thank God I found you guys (RANT!)

Tate:
Ditto on info from the wise ladies (although I decline to add "old" I'm 45, I can't be old!!! My daughter is only 2 1/2 ) - here's what I'll add. Your Grandma is following you around for 2 reasons:

First, she's watching you for "cues" to find out what's going on and what's going to happen next. You're a big security blanket! Second, she's bored!! Remember the times you've had the flu and haven't stepped out of the house for 4 days? Imagine that for months on end. A lot of ALZ patients aren't comfortable leaving the house, going into new situations, but there isn't a lot she can do. She can't concentrate. Reading is out, most likely TV as well. She can't sit and enjoy remembering good times, she doesn't have anything to look forward to.

I've seen your Mom's behavior before as well - she is so caught up in her goal that she doesn't realize it isn't your goal too. (This can get ugly i.e. when Hubby wants to his Mom out of a nursing home - but takes for granted his wife will do most of the work.) If your Mom wants to keep Grandma at home - she needs to have the whole responsibility. She's not keeping her at home, you are.

Get a home health aid NOW - you haven't mentioned everything that you are responsible for - but at some point you might be doing stuff for your Grandma that she wouldn't have wanted you to see in a million years. Scary stuff that may make you shudder years later when you remember.

Tell your Mom you need to get a female home health aid for Grandma now so she can get used to her being around before she needs help taking a shower, going to the bathroom and cleaning up after herself. Even if you are willing to do this, your Grandma might not want you to, be unable to express how she feels and get incredibly upset.

Your Mom is thinking "everything is working right this second so I don't have to do anything different, when things get worse I'll worry about it". Bad idea. Things can get worse very very fast and then you are making decisions in a crisis.

Grandma might always know who your Mom is but could have develop more physical problems than anyone can cope with in a regular house long before she forgets who your Mother is.

Good Luck

 
Old 01-07-2006, 12:08 PM   #11
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Re: Thank God I found you guys (RANT!)

Tate:
Ditto on info from the wise ladies (although I decline to add "old" I'm 45, I can't be old!!! My daughter is only 2 1/2 ) - here's what I'll add. Your Grandma is following you around for 2 reasons:

First, she's watching you for "cues" to find out what's going on and what's going to happen next. You're a big security blanket! Second, she's bored!! Remember the times you've had the flu and haven't stepped out of the house for 4 days? Imagine that for months on end. A lot of ALZ patients aren't comfortable leaving the house, going into new situations, but there isn't a lot she can do. She can't concentrate. Reading is out, most likely TV as well. She can't sit and enjoy remembering good times, she doesn't have anything to look forward to.

I've seen your Mom's behavior before as well - she is so caught up in her goal that she doesn't realize it isn't your goal too. (This can get ugly i.e. when Hubby wants to his Mom out of a nursing home - but takes for granted his wife will do most of the work.) If your Mom wants to keep Grandma at home - she needs to have the whole responsibility. She's not keeping her at home, you are.

Get a home health aid NOW - you haven't mentioned everything that you are responsible for - but at some point you might be doing stuff for your Grandma that she wouldn't have wanted you to see in a million years. Scary stuff that may make you shudder years later when you remember.

Tell your Mom you need to get a female home health aid for Grandma now so she can get used to her being around before she needs help taking a shower, going to the bathroom and cleaning up after herself. Even if you are willing to do this, your Grandma might not want you to, be unable to express how she feels and get incredibly upset.

Your Mom is thinking "everything is working right this second so I don't have to do anything different, when things get worse I'll worry about it". Bad idea. Things can get worse very very fast and then you are making decisions in a crisis.

Grandma might always know who your Mom is but could develop more physical problems than anyone can cope with in a regular house long before she forgets who your Mother is.

Good Luck

 
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