Comment Author Mimi Comment Time 23 seconds ago edit delete
Taking the religious aspect out of the discussion, my question has not been about that but more to the point of what is the life lesson I am supposed to discover out of all of this..there has to be something..maybe learn patience with not only the DH' who is really the innocent one in this mess, but with others, those who seem to fail us as we think they do because maybe they are not clued in to what this disease is all about and the ramifications for not only the patient but we the victims of it. Others not in our boat have no idea of the loneliness and the broken dreams. It isn't their fault, really, but we still can get irked when we see them going off on trips or just sitting under the tree with a picnic or having a glass of wine on the front porch..the normal things we can only recall....It isn't that we don't want them to have these wonderful things in their lives but we are so wounded and it hurts knowing our spouse is here but not here anymore.
There are some days when I think that because this disease is declared to become one of the most common ones with boomers on the horizon, it will be those of us who have walked this path, if we survive it, who will be the educators for those who follow..
Joan is a spearhead of that group now with her website which offers links to supportive organizations. Otherwise we would be out in the desert on this journey. Sure there is the ALZ ASSN but something about that website is rather on the impersonal level..there isn't one as good as this one .
Joan is our troop leader...we are the scouts for the future right now some of us are in the tenderfoot catagory, others in the life scouts and some are now eagle scouts..the eagle scouts have the *....just sayin'.
I moved your comment to its own discussion - it's a good topic. We have discussed it before, but we have plenty of new people who have not weighed in, and I would love to hear from them.
I have to take Sid on an errand, but when I return, I will look up the old disucssions and blogs to add to this.
In my humble opinion there are two basic types of people in the world. STS, service to self, and STO, service to others. I think that's kind of self explanatory. The reasons behind how we develop into one of the two are as varied as our lives and upbringings. Truth be known, NO ONE 'knows' the truth about anything much. We have our "faiths", we have our "understandings" and we have our so called "knowledge, and I think because of what little we do 'know' life is the challenge it is. We all pretty much end up at the same place.
I read a quote by David Viscott today that gave me an "aha!" moment and decided it might encourage someone else trying to navigate these murky caregiving waters. "The purpose of life is to discover your gift. The meaning of life is giving your gift away." I think Joan and many of our seasoned caregivers are doing just that. We all have a gift and giving it away makes the world a better place.
On the "I am tired of pretending" thread, Blue mentioned being a control freak, and how that doesn't work well when caring for someone with AD. I answered that as Sid's neurologist told me, I HAD to learn to "go with the flow" and stop being a control freak. So, I guess one of the lessons AD has taught me is to pick my battles and let go of the small stuff.
copied from the thread CAREGIVER TIPS-Things I wish someone had told me back in Stage 2-3. I wrote this over a year ago, if anything I feel these same things, only stronger.....
Nikki:
I wish I knew then.... to appreciate and value what we still had in the earlier stages.
I wish I had been able to see through the frustration of those stages to see....that those times, WERE the good times.
I think the hardest learned lesson for me was acceptance. Acceptance of what will never be again.
Once you truly know and understand that..... TODAY IS THE BEST IT IS EVER GOING TO BE.... you develop better coping skills. A new look on life so to speak. You learn to treasure today for the gift it most assuredly is.
Nikki, I hear your wishes & I wish I could learn from them, but it is so difficult to see through the frustrations of NOW. We know things are going to get worse, but we are so caught up in the moment we don't see the future. I think that I am going to print out your saying "TODAY IS THE BEST IT IS EVER GOING TO BE" & put copies around the house so I can be reminded to appreciate the day! Thanks for your advice.
((Elaine)) I DO understand just what you are saying, and I dare say, feeling. I didn't say it would be easy *wink... It IS going to be hard! and frustrating! The more coping skills you can learn now, the better off YOU will be. Little things can and do make a difference. One great thing about this site is though each of our loved ones are different, someone here has been through something similiar and will be able to offer you help through it. Talk talk talk, it is the best release you will find. ((big hugs))
I disagree that this is the best it's ever going to be. There are highs and lows with dementia and with life.. Frankly, now, with my husband bedridden upstairs and not understanding much of what's going on at all, it's better than it was six or eight months ago when I was trying to deal with him yelling a lot and getting up and downstairs and getting his stocking on, etc. I've gotten over, mostly, the idea that he's going to be gone - he IS gone in so many ways, and I'm getting on with my life. NO, at almost 75 I have no intention of a new "boyfriend" or any such, but I'm not focussing on him so much any more. I now understand, Sandi, I think, how you could stand three years of this situation..
I understand what you are saying ((Briegull)), but my comment was for people in the earlier stages. That is why I said I copied it from the thread "CAREGIVER TIPS-Things I wish someone had told me back in Stage 2-3."
I am glad things are better for you and that you are able to get on with your life ((hugs))
I, too, was a control freak...when raising four children and having such an active life and all the activities the kids were in as they grew up, if I hadn't been organized and been a control freak, our lives wouldn't have been as happy and content as they were. That said - NOW, I can no longer be a control freak - haven't been in a couple of years....have prayed for more patience every day since - and developed a couple of new mantras: "flexibility" - "this too shall pass" among them. I have learned lessons from those here at Joan's place that made our journey easier.
I have learned that if something doesn't get done today, the world won't come to an end. I can see dust and not get up and grab a dust cloth or Swifter. I can let that load of clothes wait until tomorrow. What I HAVE to do is love, laugh, and take care of ME. I acknowledged early on that my husband had NO control over his thoughts or lack thereof; had no control over what he could and could not remember from one moment to the next; that those personality changes were beyond his control as well. What I had to do was love the man (then young man, then teenager, then boy, then toddler, and now infant) that he was/is. And find things that he could do and enjoy at each stage that I could enjoy too. That boyhood stage was a lot of fun for me too. I have happy memories of those walks at the zoo, movies, jigsaw puzzles, etc. two years ago.
Acceptance that he is almost gone has been hard, but I knew it was coming. Sandi* prepared us well. However, I am praying that it won't last three more years of him being hospital bed-bound - unalbe to feed himself and unable to dress and unable to talk. I love him enough to let him go now. Whenever the Lord calls him home, I'll know I did the best I could for him - the love of my life.
Mary, you have a survivor spirit, a sense of humor and a zest for living.......you will be fine. I will state again and again, that the last years of my husband's life when he was bedridden were the easiest of the whole journey. I had watched him go for a long time and the time that we spent "together" at the long end were wonderful. I know that sounds strange, but I had enjoyed a magical life.....I was loved, protected, and pampered by this man and this was my way to "pay" him back. It was humbling for this spoiled woman...I am a better person for it.
You people are so inspiring. My DH tells me almost every day how glad he is that I take such good care of him. I don't know how 'young' he is now--maybe 8-10 yrs old. It's really hard to say. But, he's fun to be around and so appreciative. He's a nice person.
There is a LOT of wisdom in this discussion thread! To Nikki's admonition that "Today is the best it is ever going to be," I'd add, but also be sure to enjoy tomorrow because tomorrow will be better than the next day after that. Briegull is also correct because this crazy disease progression has its ups and downs depending on particular stages. But, by and large, it is fair to say that anyone reading comments on this website is living with a spouse headed in only one direction, with a train coming right at them. THAT we know. What we don't know is how many stops that train will make before it gets to our own station. Whereas I am still hoping it's a 'local train' making many stops, I also understand those whose spouses are at stages causing them to hope for an express train. I'm not there yet. I'm still one of the lucky ones able to enjoy a movie or restaurant with my wife, although the movie days are not gonna be there long since she already cannot follow the plot and she sometimes cannot even remember the movie we just saw by the time we reach the parking lot. All the more reason to enjoy each day as much as we can. I am also now trying much harder to practice what Mary said ... to love, laugh, and take care of ME.
briegull - my dad was 78 when he remarried after my mom divorced him. I remember seeing him with his new wife was the first time I every remember seeing him tender and loving and not swearing. Growing up every other word was profanity. I asked my step mom how she got him to stop and she said 'she simply would not answer him'. They had three years before he had a stroke which left him a virtual vegetable in a nursery home where he lived another 3 years.
You never know what the future holds. My grandmother was in her 80s when she remarried after almost 40 years of being a widow.
Accvan, enjoy the movies while you can. Last winter we went to a movie every week, usually with friends and out for a meal afterwards. Now I hardly know if I dare try that. Last week we went to a movie, just the two of us, to try it out and I felt guilty about making him go. He didn't have a clue what it was about and why he was there and got fidgety, but stayed put and didn't say a word. His reward was Kentucky Fried Chicken. We'll probably try it with friends next week when they get back from vacation.
Yep, Jeanette ... the goal is to enjoy as much as we can of what we have today knowing that it may not be there tomorrow. My wife's decline in just this past year since diagnosis has been quite severe. She had been following a pattern of falling off a cliff, remaining on a plateau for 3-4 months, then falling off another cliff, etc. Now it is just a slow but steady decline. So, yes, we'll enjoy those movies and trips to restaurants for as long as we can. I know that in my weekly early-to-moderate support group, as well as on this website, I am still one of the lucky ones.
Today I got a bit of the old familiar DH back..I was clipping the ends of some new fresh flowers and managed to clip the tip of my finger..bit ow..and bled like a stabbed pig..and hubby was there on the spot to fix it and help in the kitchen...kind of like ol times...