I have just gone through posts and looked at the dates some of you "joined" and then see that you are still here and still posting. Oh my, how have you done it? For many it has been years! And then too, BOTH parents. I don't know if I have that kind of stamina. You all seem so normal and strong and I am just at the beginning of this journey. How do you hang in there when it gets to be so long? Lynne/Blue
Life is a comedy for those who think and a tragedy for those who feel. (Horace Walpole)
For me Lynn, I was the 'outsider' looking in. My sister was my mother's full-time, in the home, caregiver (her choice) because she didn't want Mom in a nursing home, she was in denial for soooo long and because she didn't want a 'stranger' in the house because Mom hid money all over and she didn't know where it may be and was afraid it would be found by someone coming in to care for my mother
I basically took my role of emotionally supporting her as she went about her business on behalf of my Mom only because she and I in a room together would erupt in fights within 5 minutes. She always went through life making her life harder than it had to be.
instead of waiting til the day and time to leave to go anywhere, because she had no one else to talk to (her choice), she'd tell Mom -- "Mom, next Saturday we're going to go to Aunt X's house". Well, then she'd get mad and yell at Mom because for the rest of the week, Mom would get up at all hours (day or night) and start to get dressed in her Sunday's best. Why? because sister said she was being taken out. Only this was Wednesday and they weren't going until Saturday -- drove my sister nuts. But why? She caused it by telling Mom too early and then getting mad at her because my mother had no ability to track days or time.
my mother was losing weight. During a hospital visit, my mother was given Ensure along with her meals. Doctor said Mom can have it as often and as much as she wants. Well, sister decided that Mom had diabetes in her family and there was high sugar in Ensure so she refused to give it to her but then caused arguments everyday trying to get Mom to take in and eat a lot when clearly Mom no longer wanted or had the ability to take in a lot.
When Mom was fighting on the taking of 9 different things each morning; some before meals and some after meals, sister and her would get into a yelling match. When it was suggested that she crush up the meds and put it in food, etc. She started crushing them, right in front of Mom!!! Well, then Mom didn't want to eat whatever food she put it in!!!
P.S. I finally attended a dr's appt with them just to have the doctor go through the list and finally tell my sister that Mom no longer needed Fosamax or Lipitor, or the vitamins, etc. It just caused battles everyday and it wasn't like it would help my mother who already had these issues.
MY SISTER DIDN'T PLAN. if she decided to escape the madness and go get her hair done (I would give her gift certificates for this), she's do it spontaneously and not make an appointment that she'd tell me about and give me a day or two to re-arrange things so I'd be there for watching my mother. if she wanted to go shopping for any reason, there was no 'lead' time, she'd just dump my mother on my kids and take off because I would already be gone.
She thought nothing of sticking her head in our house and saying, you need to watch Mom, and then run for the door. By the time, I got out of bed & dressed to go next door for Mom, her car would be screaming around the corner and she was gone. Where? for how long? Did Mom eat? Did Mom need something to drink? Am I suppose to feed her? It wasn't like my mother would be able to answer those questions.
My sister didn't want Mom "to be a zombie" so she put off and didn't always use the sedative she got when she finally caved to a nurse coming in 1 day a week for 2 hours (I didn't care how long or how many days). She'd fight with the doctors on every suggestion or prescription. its because I took away her ability to 'dump' my mother onto my 21 yr. old daughter or my 23 yr old son.
I also chose to be the outsider role emotionally supporting my sister because of another, bigger reason. It was easy for me. Hate me but unless you walked a mile in my shoes, you have no idea. My mother was my physical and emotional abuser all of my life, the beatings didn't stop until I was 27 years old. My mother truly did not like me, was sorry she ever had me and it was always her and my sister for all their lives and my sister was the only one she wanted. So in the few and far between times my sister asked me to keep an eye on Mom for any reason, my mother pitched fits that would make a 2 year old roll their eyes! The fits would be sooo bad I would be close to calling for an ambulance only because my sister dared to go out of the house and leave my mother with me!
So in my case, there were a few good reasons (so I told myself) for why I didn't have or do hands on care with my mother. My husband had been seriously and dangerously ill and had died in April, 2005 right in front of my eyes in my living room -- around this time was when Mom started getting real bad. I worked full-time, I've suffered from chronic fatigue, and I was depressed off and on ever since he passed. I provided whatever support I could and not fighting my sister over some of the decisions she made that did make her life harder was what I thought she needed -- not more stress on her.
I saw her fade, she ended up having thyroid problems that was undiagnosed because she never took care of herself. She is a miserable, lonely person because it was just 'her and Mom' forever. Now she's 59 and she's all alone. She hasn't worked in 9 years and she has no friends except some really older people across the U.S. who she got to know by vacationing with my Dad and Mom when Dad attended things run by the Tin Can Sailor reunions. But these are only 'internet friends' . she's got no one in her life; never dated, chased away every high school friend she ever had, turned down her co-workers when they got together after work to go out to bars or dinners. She just went to work and came home to Mom and Dad, until they moved to PA & then when Dad died and we moved Mom back, it was just her and Mom. She doesn't go out, and never had anyone in because she doesn't have any friends her age. It was sad that she allowed my Mother to have such control over her life all through it. She was the baby bird tucked under Mom's wing and i was the bird kicked from the nest.
Sorry for the length of the message and the venting. Its been a long time. If anything within this helps one person who is isolating themselves from loved ones, friends they had, co-workers, or getting a job all in the name of caring at-home for loved ones please re-think what you are doing to yourself and your family.
You must have a life outside of caregiving. Its imperative for the caregiver
Last edited by caringsister54; 04-05-2010 at 12:29 AM.
You will find that you are MUCH stronger than you ever thought possible. You will step up and do whatever needs to be done.
None of us willingly jumped into this, but by taking it day-by-day, you will survive. As I am now discovering, there is life after care giving. My tour of duty was only a year and a half after diagnosis. Many of these angels have had a long, hard journey that I cannot imagine.
Hang in there and keep coming here to talk/vent/cuss... whatever. We've all been there, and are great listeners.
We may seem normal and strong .. but we were all bewildered, lost and confused when it began.
I am really a graduate of Alzheimer's care. My Mom passed away in December 07, so I don't have to be here. I just like to keep in touch with the old friends I made on this Board, and perhaps I am able to give a little advice to new people.
I have long believed that family dysfunction makes AD care worse ... as in the above case; not just the Alzheimer victim is the problem, but other dynamics in the family, many going back to early childhood. Somehow we muddle through.
The average time between diagnosis and death is 8 years in Alzheimer's Disease. but as in any average, some will be on the low side and others way higher. You just have to take it day by day, step by step.
If I am at all normal or strong it is due mostly because of my daily visits here. These people keep me up. Keep me advised. Keep me.
It is such a comfort to be with people who truly understand.
I am so greatful to Martha and Ken and Diane and all the others who have completed this journey. I draw on them for their wisdom and experience. I draw from everyone and learn ...
Average is 8 years and unfortunately my mom is going into her 11th year. Exhausting. Yesterday I found out that just this week her daily walks are becoming longer. They watch her closely and had to send people to get her when she got too far away. I do have a phone in her purse that has a gps attached but ..again, just this week, she has stopped carrying it in her purse. So, we'll go to plan B. I'll call the Alz. assoc. to see what other kinds of gps thingees are available...jewelry? Something implanted?
She is not mentally ready yet for the lock down floor...so we will try to see what we can do until then.
So, Lynn, as this thing changes we have to change with it. ANd how do we do it after all these years?...just like Ken said. One day at a time.
But believe me it is a struggle. A few weekends ago I hit the wall. My husband got me through it. Her aides helped too. There are ups and downs.
Thank heavens I can come home and get the break her Assisted Living arrangement gives me.
Hey Lynne Welcome to our family. And we really ARE a family. I echo what Meg said. This board gets me through some of my roughest patches. I actually joined the healthboard when I was diagnosed with thyroid cancer (thus my name - "TC08" - thyroid cancer 08) but then my DSD (Dear Stepdad) was showing signs of dementia as I was going through my own challenge of cancer So I guess I'm about 2 years into this journey.
I know you wonder how you'll do it - how you'll get through it. Like Ken said - you really do it - that old adage - one day at a time - and as Meg said - we do breakdown / fall apart / cry our eyes out so don't think you're alone in that. My grief has been so intense lately. Just when I was wondering how I was going to get through it, I read a post on these boards about someone (sorry I don't remember who it was) who was so grief struck that she was out in her yard pulling weeds at 2:30 in the morning! I cannot tell you how much better that made me feel. Just knowing - I'm NOT alone - even though you can feel as though you are.
We have our angels on here - our veterans who have moved through this disease and are on the other side. Martha, Ken, Diane. They are truly angels who continue to hangout here and offer us a leg up when we're at our worst. So come visit as often as you like. I don't post all the time, but pretty much check in here daily. My DSD is currently on a locked dementia ward and although I visit several times a week, it is a surreal place to spend ones time. It can be very draining, but I can't stay away. He's my Dad and I love him and don't want him to be alone. But thank God there are great skilled people there 24 / 7 who care for him. As Diane had shared about her experience and her sister caring for her mom at home, you really can totally lose yourself in their care. I know I feel I've lost alot of myself and I'm not even providing the 24/7 care for my DSD.
i think we all had to become strong. this board helps so much. i didnt think i could face the fact that my mom had dementia, but i had no choice. i knew i had to help my dad. welcome and vent anytime you want. i feel we are like a family.
I am not necessarily always strong and together... I have my moments. But it has been a long journey and after a while you just get it done. My first experience was my grandmother that stayed in our house part time before she was in a nursing home. I was a teen early 20's. Later I worked in LTC. Then Dad was diagnosed about 10 years ago. Mom was diagnosed 3 years ago but has been showing symptoms for 5 years.
For me I learned to live in the moment with them. I don't worry about what is to come because I already know it is a terminal disease. I am determined to make what time they have left the best it can be. So I go in and grab the good and laugh with them and feel good about where we are in the moment. What might have been is not so you deal with what is the best you can
I just started on this Message Board in January when I felt I needed the support of others. In reality though, looking back, I know my husband was starting to lose his memory about 9 years ago when he didn't pass his Family Practice Boards after having passed them 5 times with flying colors over the years. The time element sort of sneaks up on you. I realize I was "hiding" his forgetfulness by answering for him when questions were asked about our lives by friends. I knew he didn't remember where we went on vacation or what our favorite restaurant was. It has just become so much worse within the past year. The repetition is getting to me. The best advice I had from a counselor when I finally went to see someone was to "tell your friends" and "keep a journal". Telling friends was an immense relief. So many of them told me they knew something was not right. It was a relief to them as well to know and be able to talk to me honestly too. They were probably wondering if I knew something was wrong...HA!
The journal writing was faithful until about 2 months ago. I need to get back to it. It was a great place to rant. It also helps when we go to the doctor. I can refer to it.
Well, there you have it. Welcome to the Board. You will find a lot of help out there. I have.
Last edited by btgia; 04-08-2010 at 03:16 PM.
Reason: left out a word
You have done a lot of things right Bonnie I am very open with my friends about Mom and Dad. I also had the same experience with Mom and Dad's friends that you had. They knew something was not right (especially with Mom) but it was only after I brought it up that they dared to acknowledge it... and it was a relief to us both. I was amazed at mom's bridge friends that had know her ability to remember and count cards was gone... yet they had played right along with her. I just wish they had clued me in when they found out!!
I have recommended a journal to many. It is a great way to get those emotions out in the open so you can deal with them. I also keep a log journal of everything related to Mom and Dad. Doctors, lawyers, plumbers, important facts and dates, appointments, and anything else that might ever come up again. It has become my constant companion and I don't leave home without it. Any call about my parents can be answered using that log journal. If I need to know what Mom's BP was a year ago... it's there
We take the best of all the creative suggestions and find our way... with a little help from our friends. That is what I find here the most beneficial... the friendship!