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Joined: 1/14/2015
Posts: 40463
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Originally posted by: kitty3
Thanks to all of you, don't feel I need to apologize; this 'disease' or whatever it is, not my fault. Sorry I've been so long in posting, but December has been a crazy month, lots of other family drama.And being the one everyone else has always depended on to "fix" things, my plate has been overflowing. I did finally (with much exhaustion and pain for an alibi) flat out told them I would not be having the holiday dinner doings. But I just couldn't pretend any longer that everything was ok and that I was 'up to all that'. Well, they got over it and even came up with some long awaited help, and you know, everyone survived. Dh has had an ok month with a few temper fits, a few let-downs jobwise, and many chances to blame guess-who? for just about everything. I have been reading the boards, but you all are having such different (and worse) problems than I.
I do have to vent about yesterday and would very much like opinions on this.(What could it be - does it sound like alz?) We went shopping; dh's project - sort of a technical place. He asked five different sales clerks about a project he is working on at home; and they all told him there is no way to do what he had in mind (while some rolled their eyes like what kind of a kook do we have here?)I was very embarrassed, not so much for myself, but for him. I knew he looked very ridiculous, especially after a couple of the guys took considerable time to patiently explain why his request was not workable. I finally stopped him and tried to very carefully explain that he was trying to do something we didn't need....and spending money we don't need to be spending right now. But you know, that plastic money just keeps on going thru. He finally looked at me so pitifully and said "I guess I'm just being stupid, huh".BUT it took him almost three hours to be convinced to give up on his idea, not all of it, but the part that was not feasible.
Then when we got home, he was alrght for awhile, but then decided to go outside to watch the fireworks, alone. There were mainly just kids popping fire crackers and it was very cold, too cold for me as the cold makes my arthritis so much more painful.And after on my feet so long earlier, I was exhausted.This may seem insignificant, but not so many years ago, he would not have done something like that without me.There are continuing to be incidents where he really exhibits behavior that I would compare to our five-yr-old grandson; especially when he doesn't get his way. I do try to let his preferences prevail when at all possible, but there are times when others have to be considered, and also when my health problems just will not permit, which he seems to totally not comprehend. It's hard! It seems like our lives are crumbling around us in pieces and he doesn't even notice - or care.
I know it could be worse and probably will be, but right now it seems like my hands are tied.
He does start dr appts next week and I have talked with the nurse, altho not given much encouragement about dr's cooperation unless he sees something pretty severe. I'm saying it may not look severe now, but how is it going to get better without some changes and some attention.
Sorry so long, but appreciate all you being here.
k3
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Originally posted by: LarryD
Dear Kitty,
You probably know these things but it bears repeating. Our loved ones are the same in body and spirit but their responses to input have become scrambled. It's not that they don't care; sometimes they can and sometimes they can't. Sometimes when I tell my wife I love her she says I love you back but most of the time she just looks puzzled and says, "Okay". Sometimes she starts crying for no apparent reason and ten seconds she may start laughing. She seems to understand what I am saying at times but her responses are often gibberish, She thinks she is answering me, and I act like I understand her and sometimes I do and sometimes I don't. We are used to how they have always been and now that they are different, it is hard to accept that they aren't doing it on purpose.
I wish I always responded appropriately but sometimes I forget that she can't help herself and I yell as if she were being stubborn or deliberately trying to provoke me. I can tell at times that she is trying so hard to express herself and just can't seem to make me understand. I think in her mind she is making sense but it gets scrambled on the way out. I've kinda gotten used to it now and don't look forward or backward but just try to enjoy what's left each day.
There are lots of ways you will find to cope so keep venting and you will get help here where we are all in the same boat.
Bless you and your husband in this new year. This may be the year that a cure is found.
LarryD
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Originally posted by: kitty3
Rkg, thanks also for your post. You are so very right that it helps to just get verified that I'm not alone in my feelings about what is happening, and that it is possible to adapt to manage this new life we seem to be beginning. I am going to need a LOT of coaching/practice/encouragement because this is such a different person from the capable, loving, considerate, caring guy I married -whole new world for me.Not doing that good at it yet.
Yes he is still working and sometimes seems OK in that, but at other times, gets so discouraged and depressed as he sees that he can't function and accomplish the way he used to. I really don't believe he can continue much longer, and that makes me very sad too, as he has always lived/loved his work. So there will be a giant hole in him when he finally does quit.I am wracking my brain trying to come up with ideas and make plans for things to occupy him/us and interests to keep his mind at least somewhat busy when that time comes.
Blessings to you in 2011 
kitty
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Originally posted by: Rkg
quote: Originally posted by LarryD:
Dear Kitty,
You probably know these things but it bears repeating. Our loved ones are the same in body and spirit but their responses to input have become scrambled. It's not that they don't care; sometimes they can and sometimes they can't.
LarryD
Very Well Said! Larry!
kitty, You stated that many of us are in different places along this journey, and your right. Many of us are, but understand we have all had similar issues, it's just many of us are much farther along in the journey. For me the stage your DH is in now was one of the hardest, because realization becomes more clear, yet your still trying to get your bearings. I am not saying it gets easier, but just more manageable. Unfortunately your Dh is still in the stages where people believe he should still be able to think/do normal things, but it's just a fact that he won't always be able to. And unfortunately will continue to lose those skills. We as caregivers are the ones that have to learn to adjust. Learning to run shot gun on some of their idea's/thoughts/plans will help to curb the situations that arise like your day yesterday. I understand it's hard, but it's just another thing we have to do. It might be time for you to make up some cards (business size card, that reads something like, Please be patient with my husband he is afflicted with Alzheimer's disease ( which ever dementia he has). And keep them handy for when issues such as yesterdays arise, you can slip them a card so they are aware and perhaps more helpful. You are correct when you say that "others" have to be considered. Wasting a sales clerks time, etc. That is where we have to "run shot gun".
That will go a long way in having people be kind and helpful with him. Some people are not comfortable with that. Because they want to keep the disease a secret but frankly I would rather someone know my husband suffers from AD than them think he's just crazzzzzzzzzzzzy, mean, weird, etc.
Your thoughts that your Dh behavior can be compared to your 5 year old grandson are spot on, it's often said our afflicted love ones are reverting backwards, so yes that is the direction our LO's are going. Nothing like a man size toddler!  You are now taking care of exactly that. A adult sized toddler.
As far as your DH not comprehending, that is exactly what is happening. He most likely doesn't, but he doesn't do it on purpose. It's the disease. We have to remember that! It's us who have to adjust, not them! Their reasoning button is broken, we have to adjust to that. As well as he most likely will never understand the depths of where your life's are going, yes your life as you know it is changing, it's how "we" as caregiver react to it that will effect how smoothly the journey will be.
As far as the Dr's, I am sorry to say that your DH isn't going to get better. It's just a fact! But can the DR, help to make the journey better? ABSOLUTELY! But it takes everyone to create a better journey. And if the Dr isn't on board to help you create a easier/better journey than I suggest finding one that does.
I really suggest that you look at the post that, folly posted with a link to a NY Times article, it's an excellent article that I truly wish everyone would take that approach to the caregiving journey.
I wish you luck, and though there isn't always answers to every issue we face, just know many of us have faced the same issues. We understand and completely understand that venting goes a long way to easing our stress. Hang in there.
did I read right that he's still working?
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Originally posted by: Cathy J. M.
Kitty, have you taken your husband to a brain specialist in memory issues and dementia? A complete neurological workup would be in order, and of course, lots of tests to be sure that your husband's problems don't have a curable cause. (Many things that look like Alzheimer's are not.)
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Originally posted by: kitty3
LarryD, thank you for your kind response. You are a very considerate and caring man. My dh used to be that kind of guy; I guess that is one reason it hurts so much. I know what you mean about the deliberate provoking...there are many times when I would swear that my dh knows exactly that he's doing that. And yes, that is when it is so very hard to be as charitable as I know I need to be.
May you and your wife also be blessed in this New Year!
kitty
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Originally posted by: Ellen Lee
I wish I could tell you it gets better but I have been where you are and it doesn't. Venting and learning coping skills are what matter. Wish I knew this site was here long ago I do believe it will help you to vent. Take care of You! Easier said than done!
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Originally posted by: kitty3
No, but that is what I'm working on now with his PCP appt this week. He has just lately become vocal about his awareness of his incapacities so I have been very careful not to 'attack' the issue of his memory and capability problems. He is too alert in some areas for me to put a story on him so I am just going to have to depend on his Dr or wait for the right opportunity to talk him into it. I think he is close to agreeing because he can see (at times) that it is causing much difficulty.
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Originally posted by: Starling
Kitty, no, we don't all have it worse than you do.
The first thing you need to understand is that one of the really bad times in this journey is when things begin to change. Everything looks normal, and then, just as suddenly, they aren't.
The spend, spend, spend thing is very common early on. In my house it was expensive cameras and cases of mail order wine. And coins. Lots of coins. I'm still finding them. And a car and a new couch to replace a couch that was only a couple of years old and...
So is messed up finances. I got lucky with that one, but many others don't.
And families who are clueless. I got lucky with that one too, but many others don't.
And even worse doctors who are clueless. I still can't figure out how I got lucky with that one, but the local family doctor practice has YEARS of experience with dementia. Who would expect what had been until quite recently a RURAL family doctor practice to know so much about this kind of disease when urban practices do not. But almost everyone has a story about trying to get a diagnosis, and a lot of them are really bad.
It is OK to vent when you need to blow off steam. It is OK to call the Alzheimer's Association hot line for that too. I did it and they talked me down when I was close to hysteria twice. I also called them for practical advice on my husband's last night home, followed what they told me to do exactly, and ended up with an unusually good situation at the end of it.
The first law of caregiving is to take care of the caregiver.
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