Caregiving for those with Alzheimer's

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willow140
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Date Joined Nov 2005
Total Posts : 3
   Posted 11/16/2005 5:39 PM (GMT -7)   
Hello,

It seems as if the Alzheimer's community is paying more and more attention to the caregivers of those with Alzheimer's disease. The term "caregiver burden" is used to describe the stress involved in caring for those with Alzheimer's.
I was wondering if anyone who is caring for a loved one with Alzheimer's could describe the toll that this responsibility has taken on him or her. Your response would be greatly appreciated! Willow

SnowyLynne
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Date Joined Apr 2004
Total Posts : 1539
   Posted 11/16/2005 10:12 PM (GMT -7)   
65% of caregivers die before the LO does because they don't take care of themselves.They NEED time away for respite,either have a service to come In or put the person In respite In a NH or carehome for a short time,a week or two.Even putting them In a daycare 3 or 4 times a week.That helps but caregivers do need more time to rest & recoup.


SnowyLynne


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 11/17/2005 4:56 AM (GMT -7)   
Willow .......Hi and Welcome to HW ........I am the caregiver for Mom and now I will be there for Dad........Yes I do get burnt out and I have to take time for me ....this is kinda where I go for that .........or I go for walks to try and clear my head ........I get so frustrated with my siblings as they dont and wont help........I use to be a geriatric nurse but we worked our shifts and came home ( although I always got to close lol) I am so close to parents house I see it from porch........Yrs ago my Mom and I drew up a letter had it notarized that she would not be put into a home (she was also a geriatric nurse)........at that time I was not DX with the crohns or PG and was not as sick as I have been but I do have my daughter and Hubby that will help out at times I need them .........respite care is worth it .....I have just started that for Mom and the government pays for it .........it was difficult at first but it is helping out now .......I have told my siblings that yes they have alzheimer's but I am still making memoeries ....they are not ......There are way to many peeps going into homes and I am not slamming any one for having to put parents/loved ones into homes I am able to do what I do as I am on disability an no longer able to nurse .......so I do empathize in both circumstances .......ya know when I was nursing and this is kinda off topic ......but interesting .....there was NOT one Chinese elder nor Native Canadian in the homes I worked in their seniors ,elders are revered and looked after within the family unit....just a bit of trivia .......Anyways Willow thanks for your input and you too Snowy .........Yes it is hard at times I have 2 homes to look after (I am OCD so that helps lol) and I also have anxiety /panic disorder so I constantly worry when I am not there ........I go over there in the am when I am done on here .....do what needs to be done and then try and get Mom out in the fresh air if only to the post office and for a cup of tea (at a restaurant uptown she always went to )....I bring her over here and she has "HER PILLOW lol" and will lay on my sofa watching tv for a bit then naps .....I know she is comfortable and calm when she does that ........Her aggitation level has gone way down since I told her doc off about the Ativan he had put her on .....not a med for AD (documented)........I will also do crafts with her or do something she likes to do depending on her mood and what she wants to do ....I come home do my thing here and I have to go back ,rub her legs down and get her ready for bed sit and talk a bit and then get her a snack her meds ( I am making sure she takes them ).....and get her comfy for the night but I worry all night long for the dang phone to ring ......I would not change what I do for her nor for my Dad Willow ........I just needed to get respite care and I did and that has helped me out tremendously...........thanks for the thread I needed to vent .........God Bless ........Lyn   

 


 
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    I cannot keep your feet from stumbling..........I can only offer my hand that you might grasp it and not fall...........Lyn  
 
 
 
 
                              

Post Edited (LKE aka Lyn Kyle Emerick) : 11/17/2005 5:10:23 AM (GMT-7)


willow140
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Date Joined Nov 2005
Total Posts : 3
   Posted 11/17/2005 4:37 PM (GMT -7)   
Lyn,
Do you believe your anxiety problem is an effect of your role as a caregiver for an individual with Alzheimer's, or was it present before?

Willow

Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 11/18/2005 4:15 AM (GMT -7)   
I have always had A/P it has stemmed from my childhood and got worse after sudden death of my first hubby in 1979 ,and I was left with 2 young boys and no hubby ....he had been my childhood sweetheart and I felt like my world dropped out from under me ........I have always been a perfectionist (OCD ) and have always been close to my parents ...I owned a retirement home where all my family worked ...my Mom in the office and Dad cooked and it was great then this started with Mom .........No the A/P was and is not caused by looking after them I have had alot on my plate and that is the end result but I am a survivor .......not a victim I refuse to be a victim ..........God Bless ......Lyn
 
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    I cannot keep your feet from stumbling..........I can only offer my hand that you might grasp it and not fall...........Lyn  
 
 
 
 
                              


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 2/2/2006 1:37 PM (GMT -7)   
I was sick for a few days and I could not look after Mom nor help with Dad ........My siblings were SUPPOSSED to do this for me.............I found Mom laying in soiled clothing ,sheets the works ,I blew a gasket literally .......there is NO excuse for what they put our parents thru ......notta ....none ........I am so hurt ,yet angry and they all know it now .....Most times I keep it in and I get sick from doing so ....this time I let it all out and they didnt know whether to run ,crap lol.......or what to do .......How can they honestly live with themselves knowing theses 2 wonderful loving parents gave them LIFE?????........God Bless ...Lyn ......sorry had to vent.......BTW I am the only child that is the step daughter all the rest are from both parents and yet HE is my father ya know
 
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I know there are great things out there for you .....and it is within your power to make them happen ..I believe in all of you and know you have what it takes to follow your dreams..Let that strong Spirit of yours be your guide.........Lyn 


Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 2/3/2006 11:14 AM (GMT -7)   
Oh Lyn, I felt so sad for you when I read your post. It was awful of your family not to help out when you most needed them. I am not surprised that you blew a gasket ,they deserved it and more. Maybe this episode will make them realise just what you are having to deal with day in and day out. It realy is time that they did their share in my opinion.

I hope that you are feeling a bit better now. As a sufferer of UC for 25 years(until my Ileostomy surgery 3 years ago) I can say that I know how you feel when you are struggling with your Crohns. How you cope I just don't know,especialy as you have other health problems on top of the crohns.

I am glad that you do get respite from time to time,it realy sounds like you need it.

Take care

Sue


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 2/4/2006 2:17 PM (GMT -7)   
Sue ...thanks for all your understanding and kind words .....I am sure glad to see you posting.........how are you doing anyways??.............do you have yahoo or msn or the aol im ??......if so we can chat together or I will email you ........thanks again hun and please do take care of self ......I am making sure the family gets the picture tomorrow (Sun) as I have called a "family meeting" and they will be told nicely yet VERY firmly they need to be there for the parents that were always there for them ...............I will let you know how it goes ....Howie will be home so temper will be under control lol.........God Bless my friend .......Lyn
 
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I know there are great things out there for you .....and it is within your power to make them happen ..I believe in all of you and know you have what it takes to follow your dreams..Let that strong Spirit of yours be your guide.........Lyn 


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 2/7/2006 5:35 AM (GMT -7)   
Hey Blue how are you??.......Yes I do the majority of the housework and I do up meals and freeze which ticks my Dad off lol as he was a chef (actually can still cook some pretty good food ).........I have Howie and Cait yet it is getting hard on them both she is a straight A student and he was just promoted to a supervisory position which holds a lot of responsibility and shift work so I am getting a girl to come in every couple of days it is someone from town here so I do know them and they know my parents ......It is a hard yet very rewarding thing I am doing at imes I do get tired out and down with health ......my family were all in denial and shock with the meeting Sunday .......they all said "oh yeah for sure I can help ." ya okay I called one of them yesterday as I wanted to celebrate Howies Promotion ....just the 3 of us here I am so proud of him avery hard worker and a great hubby and father .......No ome was able to stop their lives for even a couple of hours so all I had said went on deaf ear ......I wont waste my breath again ya know ........Thanks for your concern and hope to hear from you again .....God Bless..Lyn
 
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I know there are great things out there for you .....and it is within your power to make them happen ..I believe in all of you and know you have what it takes to follow your dreams..Let that strong Spirit of yours be your guide.........Lyn 


SnowyLynne
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Date Joined Apr 2004
Total Posts : 1539
   Posted 4/30/2006 1:49 PM (GMT -7)   
Caregiving is like trying to hold a beachball under water 24/7...............you need help!!!!
SnowyLynne


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 4/30/2006 3:46 PM (GMT -7)   
Snowy you are too funny but oh it is good to laugh ....and it is true ....take care ....God Bless
 
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 Let That Strong Spirit Be Your Guide 
 
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Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 11/24/2006 9:38 AM (GMT -7)   
Just checking in on caregivers as the Holidays approach it becomes more stressful IMO
Make time for "you" as well
Do not let self get sick or burnt out or you will not be any god for you or the person you are looking after

LOL I should talk ........
Anyways hoping all are well
Luvs
Lyn
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 One thing I know for sure is we have each other and in times of need no one could be better off IMO
 
 Never compromise your self nor your dignity...with that ...My God
 Family and Great Friends ........I have it All
 
        Lyn
 


BlovedOne
New Member


Date Joined Nov 2006
Total Posts : 1
   Posted 12/19/2006 8:38 AM (GMT -7)   

Hello and Merry Christmas to all!

I'm a caregiver to my mother-in-law who will be 80 in a few more days.  I'd like to address first the guilt trips I put myself on for not being more patient.  It's a difficult job and I keep reminding myself I will be there soon myself and how would I like to be treated.  Respite is available, however in the two yrs. we've taken care of her she's only been away for 2 wks. and that was because my husband was having surgery and I couldn't care for two people at the same time.  She came home from the NH claiming that someone had taken advantage of her while there and she won't go back.  Bless her heart, she told us she might even be pregnant.  I'm 100% positive this never happened.  She has suffered with paranoid schizophrenia all of her life. She is physically disabled enough to be on a walker for several yrs. now and falls frequently in the night (only when getting on the bedside commode).  I've situated it right next to the bed w/plenty of light from a night light, but I'm guessing she's not allowing her BP to adjust before she stands up to sit down on the commode.  You can reiterate this repeatedly, but with her alzheimers you may as well save it.  I'd love to take her out more as I know it would be good for her, but she's a handful even w/the walker (that has the seat to sit in when she tires).  She wanted to shop for Christmas and we took her against our better judgement and 5 min. into the store and she was ready to leave w/o anything in her basket.  Even before the alzheimers really set in when she would ask how you're feeling & if you are truthful and say perhaps that you have a headache then she in turn has a headache too, etc.  I politely tell her even when I'm feeling absolutely horrible that I feel real good today.  If I were to be truthful then she automatically has the same symptoms you do and require sympathy and bedrest.  I think it's a triple whammy as she's been diagnosed with schizophrenia, senile dementia, and alzheimers.

My mother-in-law may outlive both of us (hubby & myself) because the responsibility does create many health problems with the caregivers.  I have an anxiety disorder which was pretty well under control before this and then since I'm taking coumadin my physician took me off of my hormone replacement medicine so I am having power surges and mood swings that leave me feeling like a piece of burnt toast.  I had two deep vein thrombosis (blood clots) in my leg a year ago this month and I'm still suffering the consequences of it (edema and pain).

 I need to take better care of myself, however there's always something to be done.  My husband is an only child so there's no one else to help with the responsibility.  It's very depressing.  My husband works in the medical field long hours and because I was unemployed @ the time she couldn't do for herself anymore it was my suggestion we move her in with us. I've worked as a CMA/CNA and beleive me it's much easier to care for a patient like Mom when you're not related and closely linked. Lyn, I've often thought about the fact that the Chinese/Japanese people revere their elders and they're seldom institutionalized.  Their whole family and extended family gets involved in their care. Wouldn't that be fantastic if more of us in the U.S. could do this? By the way Lyn, what is OCD?  I know it's probably similiar to my CRS syndrom. LOL

 My health has been failing for the past two yrs. and I feel like I'm stuck in a turnstile and can't get out.  I'd appreciate hearing from others with their experiences regarding this subject.  Meanwhile I'll keep asking God to give me the ability to accept that which I cannot change.  I couldn't find a spell check on here, so please forgive me if I've mispelled some words. 

God bless you all and don't do as I do, but do as I say!

Take care of yourselves!!! 

BlovedOne



  • "God grant me the serenity to accept the things I cannot change, the
    courage to change the things I can, and the wisdom to know the
    difference." - Reinhold Niebuhr

Post Edited (BlovedOne) : 12/19/2006 12:13:01 PM (GMT-7)


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/20/2006 2:47 AM (GMT -7)   
Welcome to HW firstly
You have come to a place that empathizes and will offer you much in support
I looked after my mom she passed away in March and I too was the only one that did anything/everything other than a bit of wee stuff Cait my daughter did
I have Anxiety and Panic disorder have had since young ,I have crohns and other illnesses and am 52 myself.
I was quite ill at times with IV in after having treatments in and such but it was my Mom ya know
Now I am loooking after Dad ( step) I loooked at him 2 days ago and I sear I was seeing him already gone
I know in my heart he wont be here for long now
His spirit and heart is broken he does not like being the way he is and forgetting things names places all the stuff he loved to do .
I look like Mom and it scares me and I know even with the AD it takes him back .......
Again I am the only out of 4 that look after him and NOT one is ill
They only came round for money
I had my own home and was an R.N. bt had to retire
Yes much easier when not closley related I believe too
As for the Chinese way I would wish for that in a heart beat
Our seniors and veterans that went to war for us are now where ,,sitting in some NH forgotten.......most
Do you have the funds available to have someone come for respite care for a day even pick her up or take her to someplace for the day and you get you health better??
Believe your plight is not falling on deaf ears I feel I wrote your story to a point
OCD is Obsessive Compulsive Disorder
I have that as well
I have to have home spotless ,count in groups of 3 or 5 lock doors in same groups of numbers Balancing everthing has to be one of the worst things lol
I hope you will post back and let me know how you are and if you have MSN or yahoo please add me and we can chat
I am in Ontario ,Canada
Take care and
God Bless you for being there for her even with all you have on your plate
I do admire you for that
Lyn
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 Never compromise your self nor your dignity...with that ...My God
 Family and Great Friends ........I have it All
 
 Dream, Reach and Believe ......You can Do It........We are Here For You 
 Happy Holidays and all the Best in 2007 .........
               God Bless .........Lyn


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 1/3/2007 4:12 AM (GMT -7)   
Just wondering how all are doing
Hoping new year brings you good things
Luvs and
God Bless
Lyn
    Contribute today to support Healing Well Forums...Donate @
 
 
 Never compromise your self nor your dignity...with that ...My God
 Family and Great Friends ........I have it All
 
 Dream, Reach and Believe ......You can Do It........We are Here For You 
 Happy Holidays and all the Best in 2007 .........
               God Bless .........Lyn
 
          All The Best In 2007 To Everyone 
                                  
                          
                                   Lyn


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 4/2/2007 12:05 PM (GMT -7)   
I wish all the caregivers out there the best
You are really doing a great thing IMO yes it can be hard and frustrating at times BUT I know I would not trade it for anything other than them not having this DD........
Dad going downhill and is so lost w/o mom will be trying to get him out to yardsales and fishing if possible very soon
Weather finally looking up and time to get him outdoors more ...Loves to garden and such

LYN
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 **When you Feel Anothers Pain ....You Are Humbled**
 
 
Co Mod... Crohns        
Co Mod..Anxiety /Panic 
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Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 4/5/2007 4:00 PM (GMT -7)   
Wanting to wish ALL you wonderful Caregiver's out there that celebrate Easter a very safe and Happy Easter


God Bless
LYN
    Contribute today to support Healing Well Forums...Donate @
 
 
 **When you Feel Anothers Pain ....You Are Humbled**
 
 
Co Mod... Crohns        
Co Mod..Anxiety /Panic 
Moderator ...Alzheimers
                             
 
                                  
                          
                                  


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 4/30/2007 4:03 PM (GMT -7)   
In my honest opinion I believe Caregiver's are the most giving and unselfish ppl there are with all they do and the love they give ........

It is a hard thing at times but the benefits will always outweigh the trials and frustrations we do sometimes go thru

God Bless the caregivers
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Co Mod ..Crohns Forum
Co Mod A/P Forum
Moderator ....Alzheimers Forum 
 
Dx with Crohns ,pyoderma gangrenosum ,Anxiety and panic
 Way to many meds to put down ..........
 
Take that Lil step ..I will hold your hand and we will make big strides
 
                             
 
   LYN                               
                          
                                  


Howlyncat
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Date Joined Jan 2005
Total Posts : 24909
   Posted 5/4/2007 10:16 AM (GMT -7)   
Bringing back up for new members to read
    Contribute today to support Healing Well Forums...Donate @
 
Co Mod ..Crohns Forum
Co Mod A/P Forum
Moderator ....Alzheimers Forum 
 
Dx with Crohns ,pyoderma gangrenosum ,Anxiety and panic
 Way to many meds to put down ..........
 
Take that Lil step ..I will hold your hand and we will make big strides
 
                             
 
   LYN                               
                          
                                  


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/6/2007 6:07 AM (GMT -7)   
Havent seen you for quite awhile Willow
How are you doing??
    Contribute today to support Healing Well Forums...Donate @
 
Co Mod ..Crohns Forum
Co Mod A/P Forum
Moderator ....Alzheimers Forum 
 
Dx with Crohns ,pyoderma gangrenosum ,Anxiety and panic
 Way to many meds to put down ..........
 
Take that Lil step ..I will hold your hand and we will make big strides
 
                             
 
   LYN                               
                          
                                  

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