Just thinking the other day about how I have changed since my DH was diagnosed 3 yrs ago--I still go through the grief stages, especially anger, haven't mastered the acceptance stage yet, but it seems that my outlook on life has changed tremendously. And I have really learned to "pick my battles", not just with my husband, but others as well. {most of the time}. So...I was wondering...how has AD changed the rest of you-not just the obvious ways, but the more subtle.
How interesting that you ask that question. I wrote a blog about that subject just last month. Log onto the home page - www.thealzheimerspouse.com, and click on "previous blogs" on the left side. Scroll down to Blog #389. I think you may find a bit of yourself in it.
I have learned how to takecare of myself, dh always took care of me I was his prinsess and he would do everything for me, now I have to make all the decisions,pay bills,take out garbage, on and on and on. I have become a stronger woman and yes my outlook on life has changed, I don`t take things for granted anymore, I look at sick people in a more loving way and wonder how there loved ones are handling that. I am now trying to enjoy my life now that dh is in a nh and at times I do but to the most point my thoughts are always with him.
AD has totally changed the life of the entire family and close friends. My husband was diagnosed early onset AD about 1 year ago. He had an outgoing personality, bright and the mentor for many and definately the head of our household which I gladly left him do. Our family has always been extremely close. All celebrations were held at our house and we never missed an event - now the kids/ grandkids and friends coordinate the times they visit as my husband can't take the noise and confusion with a large crowd. We miss the grandkids events because of the noise and confusion. Unless you are personally touched with this horrible disease it is hard to understand the changes the family and the person with AD go through. Our friends try but don't really understand.
I am now responsible for everything. It is overwhelming to say the least. I miss the long conversations and the closeness my husband and I shared and our family gatherings. by the way please consider seeing an elder attorney for POA, advanced directives and to update your will.
Welcome to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There is a great new section on informative videos. Do not miss the "previous blog" section. It is there you will find a huge array of topics from my own experiences, with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
I hope you will visit often and get the support and information you are looking for.
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Welcome, Pilly, glad you are a member of our group, but sorry for the reason you need to be here. You will find a wealth of information at your fingertips and the most wonderful people in the world on this board. They have become family to me and I could not get through my days without them.
Welcome, Pilly! We come here almost daily to be surrounded by our "family" who understands what we are going through, to get or give advice, comfort and hugs! (((HUG)))
Welcome Pilly! You described my life to a tee. Sorry for your need to join us, however, I am sure you will find everyone kind, helpful & non-judgemental.
Changes? I see men/women here cooking -cleaning for the first times, bathing their wives/husbands, applying their makeup, fixing their hair, getting them dressed, incontinence issues, and women who have never lifted a hammer doing repairs, maintence on autos, taking over first time household finances, caring for parents on top of AD spouses, running businesses from their homes instead of in an office to be able to care for their AD spouse-yes, i'd say the caregivers lives evolve and change dramatically from day one. we grow from irresponsible, narcissistic impersonal personalities to one that shows empathy tolerance and self sacrifice for our spouses, and fellow humans in need- if any goodness can be said of AD this is it. divvi
While I can certainly say that being a caregiver is a character-building activity like none other, I don’t believe that all of us were “irresponsible, narcissistic impersonal personalities” before this, either. I don’t think that very many people with those characteristics become successful long-term caregivers.
Welcome, Pilly. Caregiving a spouse is life-changing and not for the weak, faint hearted. But we overcome; we grow, and this website and the friends made here are an encouragement. (((Hugs of welcome))
Jan, all of us weren't, but some were. Especially if their spouse is the love of their life that they have depended upon for years and now that spouse needs them to be strong and take care of them in return. They rise to accept the challenge. Some do choose other options. We all started out with different incomes, different circumstances, and different lifestyles. Those of us who are here, are here because we are trying our best to do our best for our spouses (spice) and to get advice when something happens, to get hugs when we are down and to get compassion and understanding when we need it. Some of us were closer than two peas in a pod when this hit; some of us had our own careers and activities, as well as family time; some of us had "Father Knows Best" lives before; some had "All in the Family" lives before; and some had "Family Ties" lives; and a hundred other scenarios.
I don't know if we have ever asked what is the longest period of time our caregivers have had to be caregivers. I know that Sandi had a long run, and Bettyhere. I think Divvi is over 10 years. A lot of us have only been caregivers 2 or 3 years, and some are just beginning the journey. It might be another discussion to find out.
I am more aware of other people and their problems and more sympathic to them than I used to be. I now have a soapbox that I climb on when reports on "what to do and not do to prevent Alzheimer's" when no one knows the cause, how can they say what prevents it???? (See what I mean?) I'm also sleep deprived. I know someday I'll catch up. I used to be totally organized about everything. Dishes were done while cooking and completed after eating; beds made upon arising; etc. I have learned flexibility. I can live with "it will get done after while" now. (I still can't go to bed unless the house is picked up and the kitchen cleaned though!)
jan if you dissect those words individually for some, and together for others, you will find most all of us have had these traits at some point in our lives. and personally i can string them all together for myself, you may have only one or several. if you have none then you are a special individual. on the contrary, those of us who can turn those traits into something more positive have the ability to become very good caregivers because the caring starts first and foremost within ourselves. divvi
I agree with Mary. I believe I have gotten the point across to most of my friends and relatives who used to send me long articles on how to PREVENT Alzheimers or how to CURE Alzheimer's. I, too, had a big soapbox that I would stand on and SCREAM at them. One cousin, in particular, was convinced that if I would make him drink a special TEA and give him a zillion herb combinations, he'd restore his damaged brain cells. I'm sure he thinks I'm to blame for my husband's deterioration, because I won't follow his orders.
It's written that without love, one could never be a caregiver. Add "patience" to that ..and I'll agree.
Mary, that's an interesting question: how long have we been caretakers? My husband has always wanted to be taken care of, but the actual A-D phase is probably close to 6 years. The last year has been easier with him, although his kids and ex-wife stepped up their trouble-making. This is a quote from Divvi, " empathy tolerance and self sacrifice for our spouses." I had that before, but what I have learned is more gumption to take care of myself, thanks to everyone here, and with special thanks to Divvi.
Jan, in a sense, we were indeed rather self centered. Never in my life would I have pictured myself cleaning poop off of my husband. I was not 'that strong', I didn't believe. I would gag and gag at first. Not as much anymore. And..I can drag the ladder in the house, climb up to the top and change flood lights (I never did that before), take the commercial sized vent hood apart to clean it and put it back together perfectly, working over my head, lifting heavy objects. I had lovely nails for 30 years..I never did anything to chip a nail if I could avoid it. I have to admit that there were strict "boy jobs and girl jobs" - and I didn't do "boy jobs". I do it all now and quite well, I'll add. I have read lots of posts from other women on this site who have also had to learn to do it all. Is it fun? NO WAY. Do I feel proud when I can make it work....absolutely! Do I have a choice?? Probably. Would I do anything differently. Nope!
Nancy, be careful about climbing the ladder. No No for me. I feel uncomfortable climbing a step stool. I know too many people our age who have "missed a step" on a ladder. Me included. Like missing a step on the stairs.
Good to see you posting Mary75! hope the manuscripts are keeping you entertained and your mind occupied on good thoughts! divvi
oh yes nancy i remember the days of avoiding doing anything that would break a nail. i wore jewelry on every finger i have plus everwhere i could hang more. and now i dont even wear my wedding band due to having my hands in clorax and depends so much..and only Clear nailpolish.. sux. divvi
I don't really know when I went from being "wife" to "caregiver". It happened so gradually. At first if bothered me when people referred to me as a caregiver. I remember I wanted to scream, I'm his WIFE!" Then one day I woke up and realized (and accepted) that I, indeed, was a caregiver. I now find myself always thinking in terms of what is best for him and how I can help him stay happy and healthy as long as possible rather than thinking so much about what I want. It's actually not a bad thing.
gmaewok.....my husband is a LOT older than me....I find people now frequently ask me if I'm his granddaughter or daughter. I'm tired of explaining and "feel" so old and tired lately... sometimes I just say YES. (m'I bad?)
My husband and I are only 3 years apart. When we were looking for our first apartment we were taken for father and daughter way back then. I wonder if there is such a thing as an AD attitude about life?
It has only been a little over 2 years since the diagnosis, and only a little over 3.5 years since I first began to think something was very wrong.
As I take over each job that he no longer can do, it has turned out to be a lot easier than I thought it would be. But emotionally it is very hard to know that I don't have a support system anymore. I truly am on my own.
I was 28 when we married so I had been on my own 10 years. I am so glad for that experience and that I didn't get married at an early age. Now that I am again on my own I miss having someone to take care of me, but I am a tough ole bird and I will survive if God is willing. Getting up on a ladder and changing recess lights at 81 is scary but we do what we have to do. And yes, DH watches me and doesn't remember that it was his chore.
Frances made me agree to stop climbing on our roof (to adjust satellite TV dish, etc.) a couple of years ago, following bypass surgery, but I still feel comfortable climbing ladders to pick fruit, change bulbs, change A/C filters, work on fan switches, etc.
If you want to do it yourself...I just did it very easy....check "do it yourself sites" and as long as you turn off the fuse or circuit breaker to that outlet nothing can happen to you. Any doubt....call in help.
I can say I've gotten more isolated than ever, more independent, NOT a little wimp any longer, WILL speak up for myself, hardened a little, emotionally, maybe cynical. Nothing really good has come out of this. Nothing that I can say I'm thankful for, like so many of the saints here! Except that I've made some cyber-friends here that can relate. But that's not like having real live flesh and blood sitting next to me.
Nancy B's comment about cleaning poop reminds me of an episode that happened many years ago. I had developed a GI upset and was heading to the bathroom. At the door to our bedroom I lost it from both ends. My wife had to clean me, my pajamas, and the floor, door, and wall. To this day I don't know how she did it. So far all I've had to do is wipe her bottom after a BM, particularly if she deposits it in her Depend.
Nope, "irresponsible, narcissistic and impersonal" certainly doesn't describe me, hmmmm.
About the only thing I think I've learned from my caregiver role is that I definitely do not like it but am apparently quite adept at it. I do know my limits though and when I reach them I will place him without guilt. Martrydom does not suit me.
I went into the nearby deli today and there was a woman - a great cook at the deli - who had left to take CNA training and had been working with a friend's father with AZ. She decided she did NOT like it, quit, came back to the deli. Said she didn't know how I could take it! Given that so far since midnight he's gotten up at 4 am and was stark naked getting in the shower with only his leather slippers on before I caught him, then that he had locked the car doors while I was in shopping (window was open! but I have a hidden key) , I'm not sure how long I CAN take it!!
DH was up and dressed this morning at 3:30 ready for breakfast. He usually sleeps until 9 or 10 o'clock. Refused to go back to bed. He usually does whatever I tell him to do but not this time. I am dragging today and so is he. The only lesson I have learned is to try to bounce with whatever life hands me.
We were up and at'em by 6:30 this a.m. Went in to work for 1-1/2 hrs., came home and DH had eaten breakfast, taken dog for walk, dressed and was playing on his laptop. Went for a drive to our favorite wine shop. When we got home someone had left several cucumbers at our door. I make a very, very easy bread and butter pickles with them. So he sliced the cukes and I mixed the vinegar, sugar and spices; put it all in a large bowl and will sit on counter for 24 hours. Then into jars and refrigerate. They will keep forever - and are so simple and soooooo good! Hope you all have a good day.