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skimps46 10-01-2008 11:02 AM

New development
Well, y'all, nothing ever stays the same, does it?

I went to give daddy supper last night, and found him clad in only his undershorts. This is a meticulous man who is ALWAYS dressed "to the nines", and when I asked him where his clothes might be, he answered, "All over". I really don't know why he took his clothes off. Weird.

So we are sitting at the table, eating grilled salmon in lemon butter sauce (I cook like a crazy person for him - anything to get him to eat), and he looked at me and said, "So, who ARE you?" He knows I am familiar. He knows we have known each other a long time. But my name escapes him, and our relationship is a mystery. So, I got the 5x7 framed picture of him and mom at their 50th anniversary, set it in front of him, and said, "Do you know these people?"

Y'all, he had not the foggiest notion. I asked him if he's ever been married. He said, "No." So I explained that the picture was of him and mom. He did not know her name, nor that she's been gone 4 years.

This freaked me right the hell out. After I told him that HE was my dad, and that woman was my mom, I said, "So. Do you know who I am now?" and he said, "No." I told him I was his daughter. Deb. And he was my father. His reply? "The HELL you say!" Of course, 15 seconds later (no exaggeration), he had no idea who I was, who that woman was, nor did he recognize a picture of himself.

Is this typical? I suspect some sun-downing is going on, as he is much much much more confused at supper than he is at breakfast. And the confusion starts sooner in the day. By noon now, he is pretty much in the dark, and by 3, he is really confused.

Also. He gets up around 8 now, naps off and on till noon, eats lunch, naps off and on till 4, eats supper and goes to be around 5. Sleeps all night. Is this typical stage 6 behavior? He is often moody now, too. Gets so mad because the neighborhood children play outside after school. I just listen, and never tell him that children are supposed to play outside, even though I want to.

Colorado winters are harsh. It will be a new adventure trying to keep him IN, WARM, SAFE and ALIVE through the winter months. I am not looking forward to it.

I am truly over my head, I think. I made appt with doc to get some assistance on board - a gait belt, a PT, a nurse, etc, and for me? Chardonnay. Chocolate. and 4,842 of Deb's towels. It will be snowing here within the month - I will send snowballs to y'all.

Thanks, you wonderful angels.

...lil' deb

Martha H 10-01-2008 01:01 PM

Re: New development
Deb, this is sadly very normal. Not knowing who you are, not even knowing who HE is, forgetting what you just told him, taking his clothes off --all of it is a normal part of AD care.

There is one answer which will give you the relief you need - he has to be out of his own house and in some kind of facility - soon. You need to be unburdened, it is too much responsibility for any one person.

Good luck - you are in my prayers.



PS we will have plenty of our own snowballs here in northern Indiana .. usually around 150 inches a year. Some of it is Lake Effect snow coming off Lake Michigan. It is beautiful - but you do get tired of it towards March! (This coming year I will be attending my younger son's wedding in Miami in March -- hooray!)

skimps46 10-01-2008 01:24 PM

Re: New development
You're right of course, Martha. It's becoming a challenge. Not a physical one as much as a mental one. I live in a world where if someone is nude, there is a likely reason for it. He lives in a world where taking off ones clothes is just something to do.

I think honestly, if I really examine my motives, the reason he is not in a facility right now is because I know he still enjoys his recliner, his fat stupid dog, his own bed...but he is enjoying it less and less. This morning, he strung together six entire words at the same time. He said, "Damn. I wish I could talk." Therein lies the bottom line reason I have not placed him elsewhere - he seems to KNOW that he cannot communicate, function, walk, etc. I am waiting for the moment - the nanosecond that I realize that he is no longer "in there". I believe he still is, and it would be so so so so sad for him. He would feel betrayed and miserable.

I may be all wet, too. He may not be in there at all. But I know he is aware, when he can't communicate, spills food on himself, sleeps all the time, and it totally pisses him off. Will there come a time when he no longer is aware?

And I saw on another post that I believe it was you that said that end stage 6 leaves only months to live, rather than years. Dad is firmly in the middle, and shuffling off to the end of stage 6. I really hope (and I don't want this to sound ugly, but it might) that he does NOT have years to live. As the progression moves on, does it move faster? Seems like he was stage 3 for 2 years, and stage 5 for 9 months, and now is just motoring through stage 6. Is it your experience that the downhill decline picks up speed?

Time to go feed him. Thanks, Martha. I sure appreciate your viewpoints.

...lil' deb

mary09 10-01-2008 05:35 PM

Re: New development
Dear Deb.....
So much to go through huh?
It's strange, this things about the "clothes" grandma is the opposite. All her life she was a very proud and private woman....never ever would change in front of everyone. And now here her two "sons" are taking her to the washroom and bathing her, etc. I know in the past, on those rare moments that she comes "back"....she says to my mom........"I've lost all my dignity". It would break your heart. There are times when she calls her son by a different name, and I think it's her way of disassociating her "son" with the man who is taking her to the washroom. Maybe it's her little mind's way of dealing with it, I dont know.
My grandma has always begged uncle to never admit her to a nursing home. Sadly though, even grandma is getting now to the stage where she doesnt know where she is, even in her own home. Most days now, when she goes to the washroom, because she still knows when she needs to the time she goes to the washroom, on the way back down the hall, she doesnt know where she is. Sometimes she knows my uncle, sometimes she doesnt. What a hideous illness. And I think this must be torture to witness your loved one go through this......
I believe honestly if my uncle could find somewhere that he felt was a caring place, that he now after all this time would consider placing her. But unfortunately, where he lives, he has not come across such a place. He at least has been talking about "after", and where he will live, when grandma is gone. This is "huge" for him.....because up to now, he has always been in denial when talking of her passing. I think it's important for him to have accepted this.......god bless him. My biggest fear is that he is alone with her, when she passes. For all he's given her, I hope and pray to God he has someone with him for support when it happens.

I live in we have tons of snowballs up here friends!!! :)

Love, Caroline xo

Gabriel 10-01-2008 07:54 PM

Re: New development
Martha is absolutely right little deb... this is all normal behavior. Remember, no short term memory so they don't remember what you tell them. They regress so he may be at a point where he was unmarried and didn't have a children.

Does it come and go.... YES! My dad might greet me and call me by name. Or he will not know who I am or who that lady working in the flower is (Mom). Then he will ask who lives in that house. He now talks about going home.... to help his Mom milk the cows. He ask me who did all those things that are stitched on his history pillow. There are times I think he knows who I am and times I know he doesn't.

Your dad will always be in there little deb. He just get pushed further back in the plaque and tangles that crowd his brain. From time to time we will see glimpses of them... even if it is in our own eyes. I don't know if there is a time when they are not aware.... but there is a time when you need to let him go where he will get 24 hours care 7 days a week. I still remember the night he opened the door......

There is no way to know how long which stage will last. My grandmother was in final stages for over a year.... almost two. Her's was accelerated by a blood infection that a well meaning doctor "saved her" from... she never walked or communicated again and lay in a nursing home bed for almost 2 years. Some go quickly. Some of this board have parents that are experiencing rapid deterioration. Martha's Mom hung on for a while. So nobody can tell you how long it will take your Dad to get there from here. What I do know is that you will probably reach the end of your towel first. One of the wise souls here told me, when we had to place Mom and Dad in AL, that the patient has long been ready. We place our parent(s) when we are ready.

Talk to your Dad's doctor. Be honest and upfront with him about what is going on, and see if he can help you.

I do worry about you and I do worry about your dad.... especially when he is alone. Most of all I worry about you if something were to happen to your dad.

Love, deb

skimps46 10-01-2008 09:55 PM

Re: New development
Deb, I have done more intense research. I have discovered more about this disease than I thought possible.

See, I thought (I have a BA in nursing - I should be smarter 'n this) that dad would progress down the Dementia road, and then one day, *wham* have a stroke, or heart attack, and that would be that. Well, stupid me. This disease, barring pneumonia, sepsis, broken hip, could just make him more and more unable. More and more child-like, more and more needy. I can't pick him up. I can't turn him in bed. I can't do any more than I am doing, not that that is not a lot, but this could get a lot worse. A lot more intense.

I have accepted that he is a firm stage 6. But as I looked at stage 7, I see that he is less able to communicate than he was 3 months ago. Walking is a total challenge - the 30 feet to his shed out back just wears him out. That's all the further he has walked in weeks. It seems that the progression is picking up speed. He is actually headed into stage 7. I see the probability of him not being able to talk at all. Or walk - at ALL! And it could be soon.

I have called his lovely doctor (she is a beauty - with a gorgeous name - Cyd), and made an appt for next week. I want her to see him. Try to talk to him. And figure out what to do about these rip-roaring headaches he seems to be having.

I see that he needs a lot of care. I am no longer wandering back to my house as often, as I just don't know what he'll do next, and at the moment, it's all on my watch.

It would be a total blessing if all these loved ones that are languishing in hospitals, nursing homes and at their own homes with caregivers would either get better - or worse - and quickly. Better for everyone. Most of all, the patient. Daddy is so sad. So ****** off. So helpless feeling.

I never knew what a life changing experience this would be. I mean that in it's most literal form - I will NEVER be the same after daddy dies. I know it's coming, and I am sort of prepared. But this experience has been such a labor of love, of dedication and of duty that I cannot imagine that I will ever look at an elderly person the same again.

That old woman in the grocery store - that is someone's mom. And the old guy walking across the street laboriously leaning on his cane - that's someone's dad. It's a real eye opener.

I will be getting some info from the doctor next week. It's time to make some immediate changes for dad's own good. It's not about ME. It's all about HIM, and he deserves the best. I just don't know if I can give him the "best" all the time, any more. I sure try. But it takes more than I can do, I fear. I really cannot stop him from opening the door at night. I just can't. I am only one person, with a family of her own, and I have not perfected the cloning I so desperately need. I need help. And I am gonna get it. Post Haste.

My towel supply is dwindling. I have given out all my Care-Bear towels, one Strawberry Shortcake towel, and all I have left are my Mighty-Mouse ones. I could sure use a Superman towel, and a new supply of rocks. Daddy has forgotten about rock hunting. Just that fast. So sad.

...lil' deb

Gabriel 10-02-2008 12:34 AM

Re: New development
Little Deb.... you are overwhelmed and you are NOT super woman!!! If you were, you have met Kryptonite in the form of dementia. You have done far and above what most would or could do. No, you can NOT be in two places at one time. I sense your fear in leaving your Dad alone and your guilt of not being in your own home when you need to be there. You are torn.

Let me tell you from experience because I so tried to do what you are doing. I just didn't last as long as you because of the distance and the fact that I had two parents physically fighting each other and causing one disaster after another. You can't do it all!!!! You can not be all things to all people!!! Everybody will eventually be neglected.... especially YOU!!! Your Dad needs 24 hour care 7 days a week and you can't do that. It is about both of you and both of you will be better off when you fine help in some form.

I have to hand it to you. You are one of the most persistent stubborn individuals I have witnessed in a long time. I said that with a smile. You need a badge of honor for what you have accomplished. But you also need to know when it is time to give the job over to the professions.

I know you are a nurse, but where in your nurse training did you get experience with dementia patients? Super Woman again? There are doctors that don't understand what care givers go through. I saw that with Mom's doctor. Unless you have been in the trenches you don't get it. The only training is on the job. You now get it. Yes it does color the rest of your life and you look at so much differently because you have been there.

Now I am going to give you some good advice about afterwards. Once you don't have your Dad to occupy every spare waking minute you will need to take a bit of a break and then find you something to occupy your life. You are going to be lost without the constant demands. Just a little heads up from someone that is one step beyond you :)

So no regrets and no guilt that you can't do it all. You have done all that you can. Let us know what the doctor says and I hope you find the help that you need so desperately..... I will keep you both in my thoughts and prayers.

Love, deb

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