Hi Everybody,

I want to say something and try to get some help - it seems that is the only reason I come on here anymore?! I do know that mine and my familys problems are no worse than yalls...

We have been going thru the get the pace maker or dont get the pacemaker thing, with my dad (Alzheimers and Parkinsons). Who is living at home - just the 2 of them - with my mom who has early dementia and uncontrolled diabetes. We have 2 drs. envolved, his family dr. and a cardiologist.

My parents especially my dad, keep wanting to go back and talk - back and forth and back and forth - to get the drs. to help them make up their mind. Well these drs. are tired of it. So, am I and now my mom sort of is.

We have seen the cardio dr. 3 or 4 times, including a the top stress tests - and of course lying down (with good results from that). The family dr. is a doll and deals also with the patients in a nursing home. He has the patience of an angel. The cardio needs more bedside thereapy. Which I believe I have said hear before!!! :>

Anyway, they settled with giving my father some pills that will maybe bring up his pulse and blood pressure or maybe just his pulse or maybe nothing!!!

He is to take these pills 2 x day for 2 mo. and then - with several heart/pulse tests in between, to see if they are doing what my parents expect! One thing that gets in the way - is where he has his pulse taken. After a long walk down the hall. After waiting 1 hour. Sitting in his lounger chair at home (the home health lady).

Ok, I know yall are saying, speak up you dumb fool!!!!! But, I do not know why but, out parents (my sister and I), would not put us 1st on the POA or anything. We finally got it all set up after working on it for a year - with them. Then they say, Mom is to be dads POA and then Wannabe 2nd and sister 3rd. Then they also say, Dad is to be moms POA and then Wannabe 2nd and sister 3rd. How do you like that.

I asked the family dr. what it would take to get this done, me as the 1st one, and he said a whole, whole lot. Including legal and fighting. 2 Drs. - my dads and my moms would both have to say he's bonkers (incapacitated) and she's bonkers(incapacitated).

So, I am just really telling yall our sob story and to warn the newer ones...

Also, just to let you know that my mom is coming out of denial very much faster, but just cannot say - husband you are going to do what I say!!!

And my dad is at the stage that he will say yes pacemaker, one day, one hour, one week, one minute. And then the very next ""same words as above"" he will change his mind. My mom used to do that too. Now I think she realizes that you just cannot do that. And she also realizes that we are going to have to put up more danger (nots) and preventatives of everthing that could possibly be done in a bad/unknown way to/by him.

Sorry if this does not make much sense.

Thanks for listening. I am going tomorrow and watch my dad - so my mom can go to the red hat ladies. Let her enjoy herself why she can.

Love, Wannabe

Hey Wannabe,

I hear your screams of frustration my friend .. !!!

First of all .. with the POA .. if it goes:

For Dad
to Mum
to you
to sister

and for Mum it goes:

For Mum
to Dad
to you
to sister

if Mum and Dad are both diagnosed as Dementia and therefore not capable of making decisions for themselves nor each other, I would believe the next person in line would be the one to take the honour.

Which means, ultimately, you have the right to stomp into anywhere you like, and say "these people have dementia, they have no understanding of what is expected of them, and it's my job to protect them as best I can".

I suggest you get a letter from your doctor stating that both your parents are no longer capable of quality decision making too ...

It's time to stop giving them ownership unfortunately, and time for you to call in the big guns .. legally, morally and ethically.

Sorry if I sound harsh .. I don't mean to be .. and as for you saying you only ever come to this board for help .. I mean for heavens sake, that's what we're here for !!!!!!!!!!!!!! LOL

Anyway, back to Dad .. of course he's going to bounce between yes and no for the pacemaker, he forget's the implications, he forgets his agreeance, he forgets his rejection, he may even get to the hospital and be in pre-op, and forget why he's there and get up !!! He's no longer capable of big decision making like this. I'm sure he's having enough trouble figuring out which cereal to eat for breakfast let alone a medical procedure!!

And Poor Mum, who, although in early stages, is a challenge, PLUS the added stress of Dad .. no wonder the woman has dementia !!! I would too ! LOL .....(and seriously, has the doctor looked at stress induced dementia for her??)

OH honey, the implications are enormous ... but I want you to promise me you will vent as often as you like here .. I would HATE to see my old posts .. I wonder how everybody put up with me until I made the FINAL decision to take control and make things happen. It was one of the hardest things I've ever had to do in my life, but it HAD to be done ... and nobody else was gonna do it were they? I kept waiting for somebody else to take ownership of the situation, but that didn't happen, so necessity made me finally make the moves to get EVERYBODY safe ...

Big big hugs my friend

Dear Wannabe,

Sally is right. If you are second on the POA list, you are already in charge. The first person on the list is already diagnosed with Alzheimer, whatever stage. So you can boldly go up to the doctor, hospital nurse, anybody, and say, I want this and this for my father.

In your case I think it is high time for both of your parents to be moved into a facility where he can getthe care he needs and your mother will be relieved of it. Maybe once she is not the primary caregiver her Dementia symptoms will disappear. It does not sound to me as if her symptoms are getting worse, and maybe it isn't AD at all but just the stress of being around someone all day, every day, who is totally irrational.

In fact her diabetes alone can account for some of her confusion, especially if as you say it is not under control WHY NOT? Diabetes is not curable but is very much treatable. Something is wrong here, that it is still not under control. She may only need a few days in a hopsital under supervision - only eatng what they allow, taking her insulin correctly, testing her blood sugar correctly - before she is released as a 'controlled' diabetes patient That may make all the difference in her life.

Please please consider placement. If they want to be together, they can both be in the same nursing home. But they wil be cared for, kept safe, kept on the right meds (who is sure your dad is even taking his? My Mom used to take too many or not enough and insist she was taking them correctly!) You are too far away to supervise their every move and it would also be horrible for your own health to have to do so.

Be strong, be brave, get your sister and go to nursing homes in the area, put him on waiting lists, and as soon as a position opens, move your parents in. It will turn out to be the best thing you ever did for them. The care they get there may prolong their lives. Uncontrolled diabetes is a killer. Your poor Mom may not outlive your dad if this goes on.

Love,

Martha

(((BIG hugs)))))))) I know you are in mental pain and anguish.

Wannabe, it's time for you to take charge. Talk to an attorney to find out what if anything has to be done to get the doctors to accept your decisions instead of your mom and dad's. Bring copies of their medical records showing AD and dementia. You can obtain these by bringing your POA to the medical records dept of their hospital and doctor's offices. If they refuse to give them to you, tell them you are trying to prove that they can no longer make medical decisions on their own. Tell the people the story about the difficulty your dad and mom are having with this pacemaker decision if you must. I've found that most people I've talked to regarding my dad's medical care have been receptive to helping me more when I sweet talk them and be honest.

Talk to mom and tell her of your concerns about their inability to make this critical decision. Be nice and gentle about it (I know you always are :) ).

What would these pills do for your dad? Do you think that a pacemaker would benefit him? I've had to make some medical decisions for my dad. It wasn't easy at all. I was the one who decided that dad would not have surgery to remove the tumor in his brain. It was a difficult decision. But with dad's past diagnosis of congestive heart failure and the fact that he went code blue when he was having an angiogram made that decision a little easier for me. After his last angiogram, his doctor told me that dad could never go under general anesthesia again. They completely lost his blood pressure and pulse. He pretty much died for a few seconds. They had to stop the angiogram because of it. And so my decision had to be based on what the facts were and not what my heart was telling me.

I don't mean to scare you but it's something to think about. Would it be better for your dad to have the pacemaker or would it be better to not? What do his doctors say about the risks? Weigh the risks against the benefits.

It's a tough decision and one that I hope to never have to make again. I'll be praying for you and your family. You will need strength to get through this.

Love, Barb

Hi you guys,

Thanks for al the good sage advice!!! I know, I know, I have heard it before. At least some of it... :>

I was at my parents to do the normal bill paying, pill fixing and ordering and problems solving. I also get to chunk some yucky stuff when no one was looking. I knew from the start it was going to be a bad day, when I got there at 9:45 am and my dad was still asleep.

My mom was all dressed and excited about her purple/red hat ladies lunch/outing and totally forgot about my dad. So, I am not (so far) taking care of his dressing and toileting - so that took him at least an hour or more!!! I just did my stuff and made sure he did not go back to sleep again. Which he did about twice. Get cleaned up, rest on bed, put on clothes, rest on bed, brush hair, rest on bed.... :> And then I just fixed him a very small brkfst so he could take his morning pills.

I could go on and on about today, but it really was not that bad. We talked and I took us to lunch and we looked at some old pictures from his work retirement party!!! He remembers almost every single person that was there in those picstures!!! That is how it goes...

I will reply back on the advice issue. I do have a few excuses and some of the advice is not viable and some is very easy to do. So, I will print yall in the am and write back and maybe yall and some more can help me get another big, big thing done for my parents and the rest of our family for 2006.!!! :> Thanks for all yalls help. Anyone else, is welcome to chime in.

And thanks ever so much for my old great sweet friends.

Love, Wannabe

Hi Wanna,

Sorry to have been MIA, but it's been a roller coaster here and I've had my wagons circled.

There is a lot to ponder about the pacemaker issue. On the good side, it eliminates one or more pills (really a + if they're still doing pills for themselves) and keeps him ticking reliably. On the bad side, when the AD gets to stage 7, is it legal to have the pacemaker turned off so your dad can slip away? Ask the doctor that huge question before you choose a pacemaker for him. Perhaps since your parents will sooner or later have to move where they can have assistance, it would just be more simple in the long run to move them soon. That way, a medication aide could give them their medicines on schedule which will probably keep his heart ticking just fine without the complication of a pacemaker prolonging a very impaired existance.

I learned when my frail little aunt was very ill at age 89 that doctors are reluctant to order a pacemaker de-programmed. It's something to think about.

Good luck as you deal with all there is to juggle! Make the best decision you can for now and never kick yourself for what you cannot do or about re-thinking an old decision!

((((((( hugs ))))))) Barbara

Glad to see you're back, Barbara,

All your observations are very thought provoking.

I always think, what is the use of prolonging life when your quality of life is so greatly diminished.

Then I think of my Mom. In a nursing home, in a wheelchair, in diapers, not knowing anything about yesteday and very little about today.

YET, when my brother goes there and takes her out in her wheelchair, she enjoys seeing birds, trees and flowers on the grounds, and often says something like "isn't it great to be alive!" That little bit of happiness is worth preserving.

I am continually amazed at my Mom, and in spite of everything she is still my role model. Imagine being in her condition but not angry, not resentful , not worried, but happy to see a tree, a bird, a flower. Whatever the secret of a good life is, she seems to have it. She will be 98 in October, if she makes it. I hope she does!

love,

Martha

Hi Barbara,

I hope your problems get all fixed up and soon!!! Thanks for replying in the midst of your own fiasco.

I had not thought about that part of the pacemaker thing?! So, they could prolong a persons life, even as they were trying to die!!! That is something to think about.

Thanks for the great thoughts.


I hope your mom makes it to 98 (as long as she is enjoying her life), too, Martha. My dad will be 80 in January and everyone is wanting him to be coherent and still living at home (we will have to see wont we!!!) The relatives want to have a party at mom and dads church (very simple), instead of 50, 25 people and much cheaper. We did it up right when he turned 75 because we knew he had alz.

Now for the printing of the other posts on theis thread. I need to think and reply and read and call and visit. My sister will be back in about a week and would like some things to tell, present and toss around with her. My sister is very strong, when she gets tired of something, she will talk with almost everyone envolved and become really envolved and active in the problems!!!

Thanks again.

Wannabe
Love, Wannabe

Your sister sounds like me! When my sister was hospitalized with Guillian-Barre Syndrome (she was temporarily paralyzed from the neck down-had to learn to talk, walk, eat, speak and breathe again), I had questions no one could answer. I wasn't happy with her doctor's inability to tell me or my parents what's going on. She came within an hour or two of dying. She was only 18. My sister spent 5 weeks in intensive care before going to a rehabilitation center for six more weeks. While she was in intensive care, I actually got to know the president of the hospital. I met her quite a few times in the halls and elevator. She invited me to join her for dinner in the cafeteria. Here I was a 21 year old factory worker hob knobbing with the top dog!:)

Needless to say, she got answers for me!:)

The moral of the story is: Where there's a will (and a big mouth!!!:D ), there's a way!

Love, Barb

Hi everyone,

I really appreciate everyones advice, help, understanding and being there for me and my family.

I sort of feel like being around my parents is making me a little wacko too!!!

Wed. with my father was really not too bad - for me. But, if you just threw in my sister or my BIL or one of my parents friends. They would have freaked out. Everything workied out ok in the end. No one got hurt, we had a nice time for a while and my mom got to get out with the ladies!!!

Hey Miss Angel Bear - You are correct in your order of how the POA goes in my family. Someone - a friend or lawyer or someone, told us that we would have to have the whole POA rewritten when this lucky day did come, but I would not mind spending the money for that.

I think that I can get a letter from my dads family dr. (who also works at a assisted living, mid. living and alzheimers place - the dr. on call). I probably would have to talk to him about it before and then he would only do it in front of my parents. Not sure, I will call him next week, and he always calls me back after patients. Just some kind of letter that said my dad was incapacitated or something (more kindly) that means the same thing.

But, if I only got the above, the power of my dad would go to my mom. And... My moms family dr., which is her only one, has been having a hard time with her for years. She does not like drs., hospitals, pills or anything like that!!!

Over the last 2 - 3 years, since she was diagnosed diabetic, she did not want to test like she should, eat like she should (she did go to the "learning" class for diabetics), or take her pills when she should. She only goes to the dr. to get pills and then usually does not do the other tests that he wants and needs for her to do. I have gone with her twice (on his request) and have written 1 or 2 notes to the dr. But no reply on the 2nd one, which I hand delivered. So... He probably would not write a note, saying she was in capable of handling her daily living. But, I will certainly try!

I will try to do my dads first (with out my moms permission) and then if no go, with my moms permission - prob. take about 3 mo.!!! Then when I get a letter from my dads dr. - I could show a copy to the other (my moms) doctor, if yall think that would help or hinder???

Angel, I am sure that part of my moms dementia is stress related - pertaining to my dads illnessess and part to diabetes. But, her dr. said she has had this early dementia for quite some years!!!

As for your old posts, I bet it helped you to vent and at times you were very entertaining, to us. You made us laugh a lot, especially when we and you needed it!!!

I am going to try harder on this part of the 2nd parenting!!! :>

Hi Martha, I am going to do a couple more prints of the stages. Especially for talking with people and drs. It cannot hurt.

And you are right about putting my mom in a hospital to be "re-learned" about how to treat her self as a diabetic person. And I am sure it would add many years to her life. Like, she will take the pills the dr. gives her for her kidneys for a month and then quit. And so on... But, we would have to have the police drag her there!!! I certainly wish this had been done when she was 1st diagnosed years ago. But, I was not told til about a week later!

And you are right about the stress, diabetes helping to cause the dementia. But, she has always been a little different. The grandchildren used to call her "bonkers" and my dad "grumps".

My dad only gets his pills when my mom gives them to him. They are in a M - S container that I fill up (I have 3 actually). She forgets sometimes. And then one is dropped or left in the container!!!..

Hear is a question for yall, can you put your parents on an assisted living waiting list, without them knowing. I would probably have to wait til I had the drs. letters????!!!

BARB - I do need to find those copies of their diagnoses from their drs. Maybe I can call and ask the receptionists for new copies??? I think they would both give those to me. My dads anyway. And I know I have a copy of my moms.

And I am so glad you told me that story about your dad and the operations. That helped a lot. The pills that my dad is taking for 1 - 2 mo. (I need to look at the bottle next time I go over there), are supposed to make his pulse go up from 40 to possibly, 45, or 50, or 55, or 60. But it is very hard to take his pulse. When he is sitting for a long time like 10 min. it is very low. And when he walks down the long hall to the dr. ofc., it raising up to 50 !!! But the nurse said to call and have a wheel chair waiting for him downstairs, the next time we come.

You are also right about the operation thing. When my dad had a hernia operatiom a yr or 2 ago, they had to stop and send him to a cardio, because his heart was jumping up (?). It turned out to be stress related, and he had the operation a month later, but you never know.

Barbara, I did not know that a pacemaker could possibly be part of the decision to keep someone alive or not. I hate that kind of stuff. There are just too many ifs ands and buts. That really is something to check up on! There are truly lots and lots of implications when it comes to that. We would have not relatives messing in with that, just doctors and hospitals.

Thanks to every one for you help and I hope this huge novel goes thru! :>

Thanks and I love all of you for your caring, amond other things.

Love Wannabe

Wannabe, it's normal for a person's pulse to be lower at rest. Not as low as your dad's though. So I wouldn't be too concerned about the change in pulse from sitting to walking. It's a concern though that both are low. Are you charting the pulse for the doctor? I had to do that with my dad for a while. What I would do is take his pulse before he got out of bed and chart that under "resting pulse". Then I'd have him walk down the hallway and back then take his pulse again. I would chart that under "pulse". The doctor said he was glad I did that. I used to be a volunteer emergency medical first responder so I used to kinda know something about what I was doing. :D I've forgotten some of it now because I haven't had to practice it in so long.

Oh and one more suggestion that might help in convincing your mom's doctor that her dementia is getting worse. Chart or journal things you notice whenever you go to your parent's home. The old food in the fridge, forgetting to take pills, taking too many pills, mom's mood, forgetfulness, anything that's not like her the way she used to be. Write your concerns if you wish and add the note to that. From your discription of this doctor, it sounds like you're going to need as much concrete proof as you can get to win him over.

Love, Barb

Hi LuvDoggie,

Thanks for the advice. I especially like the idea of taking his pulse when I go over there. I guess, I could lie and say the visiting health care lady asked me to, or his family dr.???!!

Now, I just need to learn how to take a pulse. I can practice on my husband, if I can find a watch with a second hand!!! Or a clock!!!

And the part of writing down, when my mom does even weirder things than normal... That might be doable. I prob. need to consult my sister on some of the things that she does all the time over the last 2 - 3 years?! But, I could write yall another book (OH NO!!!!!!!), about all that she says and does that are just too far out. But I Will Not! :>

But, to be truthful, my mom calls me at least 1 x day and will tell me at least 1 or 2 good things and 1 or 2 bad things that have happened that day, that include my dad. I imagine it is her way of letting me know how he is. And it is prob. good for her to spout - like I do to yall! :>

Take care.

Love, Wannabe

Oh I thought you were already taking his pulse.....

How far along would you say your mom is in her dementia? Is she reliable enough to give you accurate information over the phone regarding her or your dad?

The visiting health care lady could possibly be a good ally for you and your sister. Would she be willing to help you by telling you things she notices on her visits?

Love, Barb

Hi mydoggie,

My mom could NOT be trusted with just about anything she might say on the phone or in person. She would tell the truth to me, I think... But to a dr. or any type of alzheimers or elderly care person... She would do or say, what she things that she thinks would be good for my dad. Things that would make him look very good!

I am already hoping that the visiting RN lady (his case manager), will be able to help us when the times come. We talk a lot on the phone, from my house and she helps me and I help her. I wish that I could have a copy of the case managers forms. I bet that would be interesting.

They are starting (the home care people) a 2nd 60 day program. I do not know if Medicare will pay all this sime, my mom is going to ask on Tues. SM.

Take care

Love, Wannabe