This morning, re-reading Joan's blog about how things have changed for her, I thought—what if we each could have sat down at the very beginning of our journey and read all the things we would post on this site? I'm about to start my 10th year of caregiving, and I think how different things are now from what they were like in the beginning. I would almost be afraid to go back and ready everything I posted so far on this journey, and that doesn't include a whole lot of posts that never made it out of the computer.
Would I have made any different decisions if I had known then everything that I know now? Undoubtedly. I've thought all along that when all this was over, I would be able to see perfectly clearly—then—what decisions I should have made along the way. It helped a little when I finally realized that caregivers are faced with a lot of decisions that don't have any good solutions at all.
One of the first things that comes to mind for me is trying to let my husband have a share in financial decisions because he wanted desperately to feel like he still had some control in this situation. Do I have to say that the decisions we made were not the best ones? Then I think about the years when I completely ignored my own health and well-being. I certainly didn't think at the beginning that we would still be in this situation—a constantly worsening situation—this many years down the road. My own well-being is an ongoing problem, but at least I'm getting better at working on it. But I still wonder how a caregiver is supposed to balance the increasing demands of being a caregiver with their own declining abilities. I mean, everybody ages significantly in nine years, but being a caregiver ages you even more.
I wonder—if you knew back then what you know now, what would you have done differently? If you could sit down now with the person you were then, what would you want to say to them, to help them along this journey?
Jan K, I understand what you are saying....but, I don't want to go there. Personally, I don't think it would help me at this time and I'm the type of person who tries to do the best I can with what I have to work with - then, just let it go. I really don't fret and stew over things of which I have no control. And, I really don't know what I would say to 'me' to help me now. Good discussion, though!
Jan K...thanks for your thought-provoking message. I'll certainly give this matter a great deal of thought and am sure many others will also appreciate this nudge into our evaluations of our journeys.
I don't know if I would have done anything differently if I had known then what I know now. We have no one to help so I couldn't have just left my DH. When he first showed signs I knew NOTHING about Alz and didn't know the anger and threats were part of the dreaded disease. Thanks to meds those things are under control. Now if I could just control the hallucinations and paranoia that crop up when I least expect them! We are just over 4 years since dx but looking back it has been at least 12 to 15 years since it all started. I just hope and pray I can make it to the finish line if that's what it is.
I would have gone to a good stress counsellor long before I did, and I emphasize the word "good." They can vary. I was fortunate enough to have a retired Social Worker friend recommend one when I asked her.
Well if I had had a crystal ball and it shared with me that this mess would be on my doorstep I would have done somethings differently. Instead of all of our trips being controlled by DH to see the kids and my parents ( who only came to see us in all the years 3 times) we would have gone to Rome, to the beaches at Normandy etc..places he always talked about seeing when we were better fixed for travel......all those trips to see the kids time after time when they took the time to go to other exciting places over and over with the occasional jaunt this way...( hard to travel with kids don't you know and it is easier for the two of us to come there don't you know) to places we now will not share together..our trip to Italy in 2007 was canc'ed due to femoral bypass surgery..then the full on kick off to ALZVille..following the stroke..... Yeah I would have done some things differently for sure.
Jan I agree… very thought provoking. My first thought was that there is no going back, so don’t torture myself. That thought was quickly replaced with the thought that had I read someone else’s thoughts on this years ago, perhaps it could have changed a few things for Lynn and I. Or, at the very least prepared me better for what was to come……
I know there have been posts that have impacted me greatly here. Posts that made me stop and think. Some helped me be a kinder, gentler caregiver. Some made me cry out for mercy knowing that I surely couldn’t survive late stage. All have touched me in some way.
With that thought in mind, I can honestly say though I do suffer a little guilt, I have more regrets. Everyone always tells me regrets are poison to hold onto. I personally don’t believe that is true. The definition of regret is “.1. feel sorry for something: to feel sorry and sad about something previously done or said that now appears wrong, mistaken, or hurtful to others
3. mourn for somebody or something: to feel sadness about something, or feel a sense of loss and longing for somebody or something that is no longer there (formal)
Number 3 seems to be the very definition of Alzheimer’s disease. And I wouldn’t be human if I didn’t make mistakes along the way, so yes I do also feel some sadness and I feel sorry for some of things I did/said while entrusted with Lynn’s care.
That does not mean I dwell on my mistakes, it only means I recognize my imperfections. This can only be a good thing. Once acknowledged, it is easier to try to correct and not repeat.
“what if we each could have sat down at the very beginning of our journey and read all the things we would post on this site? “
For me at least, I think it would have given me strength and strangely enough hope. Through the writings I would have seen that going through the horror would of course break my heart, my spirit at times, but I would survive it and come out not only stronger, but kinder, gentler.
I always thought the stage I was going through at the moment was the hardest. And I was certain stage 7 would kill me. Not just physically, but emotionally. And for awhile there, it almost did. There is nothing, just nothing, that can prepare you for seeing the love of your life empty eyed, lost inside themselves.
For over a year this was my hell, though it hurt me immensely, placing Lynn remains the single hardest thing I have ever had to do.
I still wish above all that I had had the means to have been able to keep Lynn home with me. That regret will go with me to my grave. It still hurts deeply not having him home with me.. But, not as much as it once did. I wouldn’t have minded reading beforehand that though it had the power to destroy me, it wouldn’t . That though I did not come out whole and will never be who I once was, I would survive.
I wouldn’t have minded knowing that Lynn’s stage 7 wouldn’t be the horror I was convinced it would be. That though yes it took away so many of his abilities.. And that yes, seeing him bed bound and helpless would cut me to the core…but it would also bring with it peace and contentment to Lynn. That he would no longer be tortured by his diseased mind. That he would no longer have to suffer.
Being lost in their own little world is indeed heartbreaking.. But to me it isn’t nearly as bad as the middle stages when he knew what was happening to him. It would have brought me comfort to know he would eventually find peace… and that due to Lynn finding that peace it would bring soooo much joy and laughter to my tortured heart.
I wouldn’t have minded knowing that Alzheimer’s only “wins” if I allowed it to. And mostly I wouldn’t have minded knowing that “through it all, love remains” After living with the aggression, anger and even physical abuse….. Never, ever, ever, did I dream that the deep love could return. That Lynn would once again not only love me, but be able to express it.
JanK: Thanks for starting this conversation. I'm sure all of us can see things that we would have done better, or at least differently. Personally, I would have taken more control of our finances long before I did. I will never know how much money my DW spent on petty things. They say that this can be one of the signs of this disease. That is irrational spending. But, as someone will remind me, It doesn't matter now because it is over and done with.
The other part I often think of is the wedding vows. When our Minister said "In sickness and in Health", I didn't have the faintest idea of what that meant. Like so many others, I know now.
Nikki the MOST profound, profound advice .......not dwelling on my mistakes, it only means I recognize my imperfections. This can only be a good thing. Once acknowledged, it is easier to try to correct and not repeat. Beautiful written love story ......Lynn is a very lucky man. and Kuddo's on persuing the Marinol
like the others i think revisiting the past brings up negative impact for me as i also knew nothing about the disease. i think the number one regret would be not buying LTC insurance earlier on. it can help the care thru the many years this disease can last. knowing what i know now i would have liked to have been more compassionate tolerant and forgiving in those first years. stress and the unknown make it so much worse when you dont know whats coming.
It is funny how different things written strike us at different times. I think it must be what we need to hear, when we need to hear it. The most profound thing I have read so far remains from Nora when Lynn was starving to death......and I was yet again debating a feeding tube. She was so gentle with me..... "let your heart be your guide"
I needed to hear it, and it was said so kindly. Will never forget it. ♥
I would have been more patient and understanding-or at least I hope I would have been. Not knowing the cause of actions and bad behavior was a huge stressor. Knowing that I couldn't change the outcome, or even any part of the decline and finally accepting it was what kept me sane.
I know I wouldn't have done anything differently. I have given it my very best and if I knew at the beginning what II know now I would do exactly the same thing which is give it my very best.
I believe that everyone on here has probably given it their very best too, and like I me, if you knew at the beginning what you do now you would all still give it your very best again.
Second guessing what you have done can not help at all. Everyone here should take pride in what you have done. You deserve it. You are each heroes for your loved ones.
Yesterday is the past and there is not a darn thing you can do to change anything. Tomorrow is the future, and you still cannot anticipate what will happen, despite your wild guesses....But today!!! Today is the only thing you have some control over, and the most important of all...Handle today only..... Yesterday is the past, tomorrow is the future, and today is a gift...that's why it is called the present!!!!!!!!!!!!!!
For myself, I have more regrets than any other specific emotion.
Sometimes, I have thought of this in the reverse. Ten years from now, will there be abby, posting here at 62 years old? Will she have survived, will H be alive? Does one preclude the other?
In my situation, dementia has already won. H and I used to debate his retirement, possibly early, at 60; more likely at 65.
Even following the dx of mci, when he was still in his 40's, we were told 50% of the time it does not develop into (insert whatever word, AD, mixed dementia, atrophy, FTD)!!! So. of course we thought he was invincible, through that dx, through the 2000's, until by 2008 normal was extinct.
And so has his career been, extinct. To the extent that he last verbalized about it, he feels his identity and self are also extinct.
One thing I can say that I would definitely do differently is to not have felt so pressed to find a dx. If there had been no marker he may have had a chance at long term insurance. As it was, there was not and never has been a definte dx which has done far more damage than benefit.
I would not have spent the 5 years here helping my sister. We would have been on the road living our dream. The other might be to have run the opposite direction and leave him to fend for himself.
Already I have regrets...Regret yesterday and the day before, for being a bi@&*ch and losing my patience with DH, reading this thread is helping me to see my regrets, and how I can handle times like that better. As DH said to me "don't try to be a master, and treat me like a two year old"...I think that's what I'm doing trying to caregive more than being a wife..is that possible, when we have to take control over so much!
There is not anything I could have done differently re handling Jeff and how I take care of him. Our limits are our limits.
If I'd known WAY in advance I might have arranged our housing differently. Not sure how. Somewhere smaller and easier. I'd like to move now, but it's tricky. And I'd have still had teenagers to raise. Still have to accommodate some of the young adults, actually.
One thing I would have done, if I had only known AD was in our future, would be to have purchased long term care insurance for DH. When we finally got around to it, it was too late for him. He was already on Aricept for MCI. Nothing I could have done really matters. This is our life.
How can we not find ourselves treating our LO like a dependent when in fact they cannot function as a partner any longer in a relationship called marriage...the romance goes out the door pretty early in many cases followed by having to take them everywhere because they get lost or cannot drive, they cannot manage the finances anymore and make horrible decisions with investments and funds, give out Social security numbers or credit card numbers to strangers on the phone, don't change their clothes or shower without urging, suffer lack of self awareness like a preteen who refuses to shower???? God only knows we don't mean to treat them like a child but a child is what they are becoming and we are doing our damnedest to protect them ( and our selves in the bargain) as best we can. It is as sad for us , all the time seeing what is happeneing, as it is for them when they have those minutes of realization.
The question was posed: What if we had known? Several have responded with how knowing , they would have handled things in better ways. Some have wished for more clarity in the wedding vows—“In sickness and in health. . .” But no one, thus far has said, “If I’d known I wouldn’t have married.´ or “I’d have run the other way.’ Others still have put forth that it wouldn’t really matter, because what’s over is done; what’s coming is yet to be; and all we have is the present to take care of. No one has a crystal ball to see the future and that’s a good thing. If we knew what was coming we’d be in a constant race to be prepared and we’d be missing what’s happening now. Doing our best with all knowledge available at the time is all we have. As to more clarity in the wedding vows. It’s already there. You are making a steadfast promise—a covenant—to stand together and support each other through every event for the rest of your lives. How much clearer can that be? If one were to start saying , “for richer for poorer, except if it means food stamps or homelessness” or “In sickness and in health” except if you’re maimed while in the service; get Alz or MS, or CHF, or develop cancer”. What kind of promise would that be? The promises boil down to one thing—a binding of one to another as long as they both shall live. Living up to that is what matters. Doing the best we can (and not necessarily doing it alone) is what matters. No second guessing. No looking back. What’s over is done-we did our best with what we knew. We are doing our best with what’s here and now. And, what’s still to come we’ll address the same way. As to regrets? I have none for our past, nor for our present. Just the regret that our future has been abbreviated.
I am still filled with regrets. Somebody on this thread said that we all have our limits. I have been telling myself that over and over. I took very good care of Gord. My regrets are my impatience. I am trying to tell myself that I did the very best I could. I was not anywhere near as good as some but I tried and tried.
I would not have married him if I had known all the pain and grief he would bring into my life these last 40 years. AD seemed to be the 'icing on the cake' as they say.