It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Alzheimer's Disease & Dementia Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 11-26-2009, 09:03 PM   #1
Senior Member
(female)
 
Join Date: Nov 2009
Location: Indiana
Posts: 153
jojo1109 HB User
Does stress, even "good" stress, accelerate this process?

Today was the first Thanksgiving Mom has had my kids over in more than 5 years. This year she forgot that my kids hadn't been coming to her house for Thanksgiving, she couldn't believe me when I told her. A couple of months ago she was very emotional about the fact she felt this was the last winter that my Dad would live through and this Thanksgiving was very important to her, so my kids changed their normal plans and came here. We all took over the planning, cooking - everything, so that it would be easy on Mom. There were 23 of us in a 1400 sq.ft. house and it was hectic, but Mom was not over worked in any way. Still, during the day she got confused about which of my kids were the parents of which of the grandkids. She was worried that my daughter was leaving without her children, when those children belong to my daughter-in-law. And tonight she came to me with a mouthwash bottle that Dad and she both couldn't open. It had a childproof lid, and when I opened it she was amazed. When I explained to her how to open it she said "how in world is anyone supposed to know that?"

Last August we had a big birthday party for my Dad's 90th birthday. My sister flew in and she and I and my kids did all the work. Mom and Dad both loved it, but two days after the party I had to take Mom to the doctor because of a "nervous" stomach, and mentally they both seemed to lose some ground after the party.

I've been going under the assumption that if I can take all the physical work out of big family events, then I've taken care of my parents. But now I wonder if maybe the big family events in themselves are a stress that makes Mom and Dad go downhill faster?

 
Sponsors Lightbulb
   
Old 11-26-2009, 10:02 PM   #2
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,167
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Does stress, even "good" stress, accelerate this process?

Big events like that are just stressful. They are not able to comprehend all that is going on like you and I. The noise, the chaos, the large number of people, the change in their routine, and everything about a large gathering is difficult for them to handle even if they don't have anything to do. I am not sure it makes a permanent change but it absolutely makes it worse in the moment.... and perhaps makes us more aware of just where they are. This also happens when you move them to a new living arrangement or make other major changes in their daily routine. Hospitalizations are probably the worst. I have seen significant declines in both Mom and Dad after hospitalizations.

The large gatherings and new settings just have way too much information for them to try to process. If you are there with your kids then she can put that together. But if there are three families... she gets them all confused in her brain. She doesn't have a clue where all the noise is coming from, thinks she should be doing something but no clue what, and she looks around and doesn't recognize what is going on around her. So to answer your question... even if she doesn't lift a finger anything out of the ordinary is stressful. They do much better with familiarity and routine.

Love, deb

 
Old 11-26-2009, 11:05 PM   #3
Senior Member
(female)
 
Join Date: Nov 2009
Location: Indiana
Posts: 153
jojo1109 HB User
Re: Does stress, even "good" stress, accelerate this process?

You're right, it was the hospitalizations the year before last that brought on the mental confusion that has progressed to this. From my experience, with the 90th birthday party, it isn't temporary.

You seem very wise, let me run this past you. When I was looking for a copy of my POA (which I found, and it's durable and includes medical) I found a letter my grandmother wrote when she was 76. She had spent several months in another city caring for her sister who had dementia and the letter said that she wanted to establish guidelines about her mental competency while she was of sound mind. She wrote a list of questions and the answers to those questions and said that if or when she didn't know the answers that my mother should know she was not in her right mind. I gave the letter to my mother to read yesterday, and now it's lost - but, I've made a list of 15 questions about my mother's life that I know the answers to and my mother should or would have known the answers to. I'm thinking about asking her those questions, and I'm guessing she'll be able to answer about 10 of the 15. I would use this as a base line for my own evaluation of when.... I don't know of when or what. Am I over analysing this?
I guess I'm thinking if I have a list of 10 questions she could answer in Nov. of 2009, and in Nov. of 2010 she can only answer 5 of the questions then she will realize she's no longer competent, but as I write this I'm sensing that this is not realistic. But it could be a tool to help me decide what to do in the future couldn't it? Or maybe just my day to day experience will tell me what needs to be done.


Love, Carol

Last edited by jojo1109; 11-26-2009 at 11:05 PM.

 
Old 11-27-2009, 06:28 AM   #4
Senior Veteran
(female)
 
Martha H's Avatar
 
Join Date: Dec 2004
Location: Middlebury, IN
Posts: 4,695
Martha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB User
Re: Does stress, even "good" stress, accelerate this process?

Big get-togethers are too stressful. As dementia progesses, the person's concentration narrows. They can manage one person at a time. Even two people talking at once is too hard to process.

The list of questions is a brilliant idea. I will make a list today and give it to my daughter. If the time comes when I cannot answer them, I am ready for a nursing home! Better than the doctors' mini mental test. You may remember who the current president is, but if you forget your mother in law's name, where your grandparents lived, what country your Mom came from, etc, you are on the slippery path to vacancy. I pray I will never get 'it' but if I do, I won't let my daughter play the role I played for 5 years, trying to keep Mom home, safe and happy .. and failing in every single thing ...

Love,

Martha

 
Old 11-27-2009, 06:36 AM   #5
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,167
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Does stress, even "good" stress, accelerate this process?

Jojo, get the book "Still Alice" by Lisa Genova. That is exactly what the lady in the book did but she made the list for herself. In the end she didn't know why she made the list... but the book does explain the brain process they are going through.

My first question was... A way of knowing what and then what do you do with that information? If she can't answer the questions then it's time for placement in a facility? I'm not sure where you are going and not sure you know either except we all want something concrete to hang onto in a disease that doesn't give us concrete.

You Mom may be able to answer 10 out of 15 today, 8 out of 15 tomorrow, and then 12 out of 15 next week. It's not a constant steady progression but more like a roller coaster ride that starts at the top and goes up and down until you reach the bottom. To complicate it more each progresses in their own way dependent on what part of the brain have the most plaques and tangles. Different things are lost at different times and rates. What you are proposing only test one kind of cognition and there are many.

A better test is the Mini Mental. It is a series of 30 questions that test many levels of cognition. Your Grandmother probably didn't have access to such or know it existed and was trying to come up with something to let her know if she was getting what she watched her sister suffer from. Sadly, when she got to the point she feared, she would not know what the list was for. I'm not sure if it is a good thing or bad thing (perhaps some of both) but the loved one with dementia usually has no clue there is anything wrong with them or only a vague idea that something is not right. They are incapable of comprehending what is happening to them.

I saw my Mom do much the same after caring for her Mother except she would test herself by doing puzzles. Crossword, jigsaw, saduko, and on and on. She did them well, and then she struggled, but finally she was just putting letter or numbers in the puzzles that were incorrect or talking about how many pieces were in the jigsaw puzzle. She had no awareness she could no longer do them.

Also asking question that involve recall can be impossible for your Mom. She might be able to recall an incident on her own and might even obsess about it for a time and still not be able to recall it on demand from your question. One of the cognition levels is the ability to understand what she hears. She may have an auditory input deficiency that prevents her from understanding the question.

So it's not as simple as a few questions about your past and you know what is going on. If you want to know what level your Mom is on then you need to find a Memory Assessment Service or other Cognition testing clinic. I did take Mom to one and that is where she was initially diagnosed. She returned 9 months later for retesting. They are very comprehensive but are only good to a certain level of cognition decline. After wards the testing can not be done effectively. It has been over 2 years since Mom's last test. From there they just did the Mini Mental. Mom has gone from a 27 out of 30 three years ago to a 0 out of 30 last month. Yet she still knows me most of the time, talks about the farm and her siblings and her parents. But if you ask her who is in a picture of her family, she can't tell you. She can not independently take care of any of the functions of daily living but she knows her husband.

Hope I haven't completely muddied the muddy waters

Love, deb

 
Old 11-27-2009, 09:09 AM   #6
Veteran
(female)
 
jagsmu's Avatar
 
Join Date: May 2008
Location: BC, Canada
Posts: 387
jagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB Userjagsmu HB User
Re: Does stress, even "good" stress, accelerate this process?

With my mom the larger gatherings was one of the first things that we noticed that she no longer wanted to attend, including my sons wedding. after that we scaled down our get togethers, ex. this thanks giving (canadian) we had the dinner at my moms,we cooked it at my daughters and then took it over, but we came and went in turns, I was there most of the day, but the kids came and went. they came for an hour or so and then left and then the next set came a little while later, this seemed to work out well but of course we all live close...We don't say anything anymore about get-togethers because my mom gets stressed out, if we visit we just show up and we always make sure that there is never more than a couple of people there at once...my kids have gotten into the habit of phoning me before going over to make sure that there are never more than a couple of people there.. my mom loves company just not to many at once and if you phone to say you are coming over she will say it is not a good day and put you off...When the kids do visit they always bring some food of somekind, cake, cookies whatever and that also seems to releive the stress as my mom always wants to feed everyone and worries about what to put out..I have also told everyone that there will be no tales of woo spoken about when visiting as my mom would pick up on these things and then the worrying starts. so a happy place and happy face with not to many people and some goodies seems to work the best...

judy

 
Old 11-27-2009, 11:44 AM   #7
Senior Member
(female)
 
Join Date: Jun 2008
Posts: 270
cejayb HB Usercejayb HB Usercejayb HB Usercejayb HB Usercejayb HB Usercejayb HB User
Re: Does stress, even "good" stress, accelerate this process?

I think that it is the progression of the disease rather than stress. In the last year of her life I was unable to bring mum home when my men were here as she was constantly worried/distressed about the 'strange men' who were with us. Nothing helped...so we just worked around it to keep her content.
Cel

 
Old 11-27-2009, 03:49 PM   #8
Veteran
(female)
 
Join Date: Oct 2003
Location: USA
Posts: 446
Beginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB UserBeginning HB User
Re: Does stress, even "good" stress, accelerate this process?

I also think that it's a lot of faces, fear of not recognizing someone or being able to keep up a conversation, and the inability to handle numerous conversations. There's a lot of stress involved with trying to keep up. What is background noise to us can be intolerable to AD patients who lack the ability to screen it out.

DH gets stressed when there are other people in the house, or anything at all that disrupts his routine. He gets anxious if our kids had friends visiting, or a repairman is in the house. He became anxious if we took him to a restaurant, school event or store where there were a lot of people. The worse DH's illness has gotten, the more any change in his routine upset him. When he got upset, he would have a drop off in functioning.

Ultimately, we found that a quiet, stress-free routine with very few people around helped to keep him functioning as well as possible.

Last edited by Beginning; 11-27-2009 at 03:50 PM.

 
Old 11-27-2009, 04:47 PM   #9
Senior Member
(female)
 
Join Date: Nov 2009
Location: Indiana
Posts: 153
jojo1109 HB User
Re: Does stress, even "good" stress, accelerate this process?

I've given this a lot of thought. My dad didn't enjoy this Thanksgiving at all - way too many people and too much going on. My Mom loved it, she was still glowing this morning. She's always been very people oriented, loves to feed a lot of people and loves to have people in her house. BUT, she seems to feel the weight of being responsible for these kind of events even when we take over for her, and I could sense yesterday that she was wandering around, not certain what to do, often in the way - but wouldn't listen when suggested she just sit down and relax. I think it would be unwise to continue to have the large scale family events that she has always been in favor of. I think what several of you have suggested, small impromptu groups dropping by to celebrate holidays and important events is the direction we need to go. Of course the whole family loves Mom and Dad and wants them to be a part of everything, just as Mom wants to host everything, but we need to start adjusting how we accomplish that. I know they do much better when they are invited to a celebration at someone else's home. Mom always wants to go, Dad usually stays home - and they are both happy with their choice and no mental setbacks result. Christmas Eve is always at my daughters and doesn't include my sister's and brother's children so, it is smaller and more manageable. I'm expecting Christmas Eve to go fine.

I haven't reached a decision about the list of questions. Like Deb said, I'm not clear about what I expect to accomplish with that. And I'm pretty sure that if I feel it's NH time, that list of questions will be useless in convincing Mom of that. I can't even picture Dad agreeing to take part in this exercise. I already know that he can't remember his zip code, area code, mother's maiden name, etc. And yet while he can't remember those facts he is still able to dress himself, bathe himself, feed himself, drives (I apologize to the world) and goes to church every week. How can I consider putting him in a nursing home when he can do all those things, even if he couldn't answer the list of questions? I guess I do want something concrete to hold on to, and I suspect it isn't there.

I want to thank you guys for one other thing. I have started to hear what is being said about not making the goal of keeping them at home my only priority. That I might be attempting the impossible, and fail them and myself in the attempt. I hear you saying that I don't need to lose years of my life in the attempt when they might be just as happy (or miserable) in long term care. I take that advice, coming from a depth of experience, very very seriously.

 
Old 11-27-2009, 05:50 PM   #10
Senior Veteran
(female)
 
Martha H's Avatar
 
Join Date: Dec 2004
Location: Middlebury, IN
Posts: 4,695
Martha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB UserMartha H HB User
Re: Does stress, even "good" stress, accelerate this process?

When I first came to this Board and people told me 'your Mom needs to be in a nursing home" my first reaction was anger! I was so annoyed I could not believe what I was hearing. But I kept coming back and reading. I saw that nobody was prescribing a course of action for me which they had not already struggled with for themselves. I saw that in reality they were helping me tremendously by taking off the burden of guilt I had put on myself by saying "I will never put Mom in a nursing home" one day, and the next day saying "I can't deal with this! I cannot do it! What am I going to do? What is the way out?"

Less than a year later Mom was in the NH and really quite happy there. It was amazing. I had totally turned my way of thinking upside down.

Love,
Martha

Last edited by Martha H; 11-27-2009 at 05:51 PM.

 
Old 11-27-2009, 06:04 PM   #11
Senior Veteran
(female)
 
Join Date: Apr 2008
Location: Denver Co USA
Posts: 664
skimps46 HB Userskimps46 HB Userskimps46 HB User
Re: Does stress, even "good" stress, accelerate this process?

JoJo, it's so good to hear that you are LISTENING to the members here who have been there and done that! Placement for dementia patients is, I think, critical.

Keeping your loved one home is: 1. Damn nice of you. 2. Damned hard on you. 3. Miserably hard on the rest of the family. 4. So difficult that I can't even fully articulate it. AND HERE'S THE THING I REALIZED TOO LATE: It's not fair to the patient. Daddy needed more than I could give him.

When he didn't poop for 10 days, he needed skilled care. (By the way - he never pooped again until he died - 15 days!) When he could no longer eat, he needed skilled care. When he could no longer bear weight on his feet, and I actually lost my grasp on him while transferring him to his wheelchair and he slid to the floor, he needed skilled care.

Yes, I did it. I "kept him from a nursing home". And when daddy died here in our home, I was probably 2 months from seeing a divorce lawyer. My 13 yr old son was LIVING at his sister's house, probably to avoid the entire situation. I had one focus: daddy. And you know what? I did my level best, I sacrificed EVERYTHING to keep my word and keep him home. And although I really tried, 24/7, he needed skilled care. Sometimes, your best is not good enough.

And be aware, JoJo, that "nursing home" is not your only option. There are some assisted living places that are amazing. They are like a senior living place, where he won't need to know the answers to the questions, but he would be safe. They are actual apartments, where they are monitored, but not bed fast.

In my humble opinion, here's the question that decided everything for me, and might for you, too. Even though your dad can bathe, shave, dress, drive etc, ask him this: If you were sitting here at the kitchen table and you saw smoke coming out of the outlet over there, what would you do? Of course, 911, get out...all correct answers. By the time I asked daddy, he just looked at me. He had not the foggiest notion of what I was talking about. Holy guacamole. He was living next door in his own house. I had to move him in with us, and that's what we did.

He needed skilled care. And if your dad doesn't yet, he may in the future. Don't think "nursing home". Think "senior living" or "assisted living". And start nosing around now, before you really need it.

Every one of us here can speak of "all hell breaking loose", and a placement becoming critical within days. Get your little ducks in a row, keep an eye on what's going on there, and relax and pray.

Most of the members here have gone through the placement process. BlueAtlas and I are the only ones, that were able to do it at home. My daddy is gone, but Blue is still at it, 24/7. And although I haven't heard from her in a bit, I'll bet there are days she would empty the bank account for a one week vacation from her duties.

So try the one question, in a casual way, and see where the situation stands. Try to relax, and don't let all this start wearing on YOU. As you can read in the posts, it's a hard job, this caregiving. And it's a marathon, not a sprint. So pace yourself, k?

...lil' deb

 
Old 11-27-2009, 06:28 PM   #12
Senior Member
(female)
 
Join Date: Nov 2009
Location: Indiana
Posts: 153
jojo1109 HB User
Re: Does stress, even "good" stress, accelerate this process?

WOW, you have a powerful message! Thank you so much!!!

 
Old 11-27-2009, 06:45 PM   #13
Senior Veteran
(female)
 
Join Date: Apr 2008
Location: Denver Co USA
Posts: 664
skimps46 HB Userskimps46 HB Userskimps46 HB User
Re: Does stress, even "good" stress, accelerate this process?

Thanks, JoJo. I don't feel it's in anyone's best interest to wrap this business in cotton to make it easier to feel.

I forgot a couple of things. Probably because I am still horrified that I had to do it. But try to imagine yourself doing these things:

Bathing. It sounds innocuous enough - but when you wash down as far as possible, and up as far as possible, and they can no longer wash "possible"...guess what? Yep. You get to wash parts of your father that you should by rights never see.

Diapers. Again, you are dealing with the most intimate parts of the body. And I did full on diapers for 9 months. Before that, when he could still take 'em off, I just did 4 loads of wash a day because he would wet or poop himself. Eventually, I had to take all his underwear out of his dresser drawers and replace them with pull up depends. Of course, we went to the diaper style shortly thereafter.

Feeding. Unfortunately, sometimes, folks don't die before they go through a boatload of humiliation. For me to sit there and spoon feed my daddy, I could SEE the horror on his face that this was happening to him. It broke his heart, and although I would have happily done it forever, it broke mine too because it was making him so sad.

When they become bedfast, you must turn them every 4 hours. Change their diapers, their chux pad on the bed and the sheets. Powder and lotion to avoid bedsores. Hospital bed necessary. Wheelchairs, and a strong back to transfer them.

Now don't get me wrong - I would have done all this for the next 50 years if it had meant that daddy would be alive and happy. But he had to spend 6 months miserable before he died. And I watched every minute of it.

He needed skilled care. And I needed to not see all that. And now, I am seeing a psychiatrist. Really.

My love and prayers to you, JoJo.

...lil' deb

 
Old 11-27-2009, 09:38 PM   #14
Senior Veteran
(female)
 
Join Date: Jul 2007
Location: charlotte, nc, usa
Posts: 7,167
Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: Does stress, even "good" stress, accelerate this process?

You have said a mouth full Little deb and it's all dead on true. There is no way I could handle Mom and Dad at home. It's difficult enough with them in a locked facility designed for ALZ care. But at least most night now I can get a good nights sleep and I can sneak off to do a few things for my self. You are also right that nursing homes are not the only options. Mom and dad are in a locked ALZ unit that is attached to an assistant living facility which specializes in Alz care. There are 20 residents downstairs in about 15 bedroom with an enclosed outside area, large dinning and living area in the center. They ramble from one end of their beautifully decorated little world to the other freely, mingling with the other residents and staff, having activities, and enjoying their life with freedom thought it is limited to their little safe world that is geared to them with just the right stimulation. They even have a house dog It's not a bed in a corner that they stay all the time. It's their home.

I think knowing when you are in over your head is probably the hardest thing to admit. Somehow we classify ourselves as failures if we can't be all things to all people at all time. In truth, it is the ability to know when we need help that is the best thing we can do for ourselves and our loved ones. Yes, we made promises (I did) and in the moment we meant them... but time and circumstances change and then we need to rethink. It is our responsibility to do the best for our loved ones and the best for ourselves as well... no matter what we might have thought we could do in the past

So keep saying what you are saying little deb.... I am with you 100%

Love, deb

 
Old 11-28-2009, 07:49 AM   #15
Senior Veteran
(female)
 
Join Date: Apr 2008
Location: Denver Co USA
Posts: 664
skimps46 HB Userskimps46 HB Userskimps46 HB User
Re: Does stress, even "good" stress, accelerate this process?

Deb, keep singin' that song!

When daddy was a solid stage 6 and it was clear that he needed more and more care, I believe it was every one of you on this board that advised I get daddy on lists for facility placement. I believed I could do it myself.

One day turned into another day, which became a week, then a month. Pretty soon, it was a year, then two, and I was fully in this over my head.

I don't know why it's human nature to not admit when you are just flat buried under more responsibility than you can handle. I knew it two weeks after moving daddy in with us, and by the time we were in August and hospice was here, I started feeling like my "incompetance" was hastening his demise.

I know in my head that that is not true. There were medical professionals crawling all over my house, and they all said I was doing all that could be done. But being one that was raised with tons of guilt and still battles her own "guilt-demons", I think I will feel guilty for the rest of my life.

That's why placement is SO important! All of you that advised me - ...all of you...were so right. And here is something to add to the advice - placement is not just for the patient; it's critical for the careGIVER.

I am now a proud member of the "Don't Try This At Home" club. For every reason that you have all given a million times. Your loved one needs the care. And you need the life it gives you.

...lil' deb

Last edited by Administrator; 02-25-2011 at 06:53 PM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Do you ever feel "normal" or "good"??? Oppida Thyroid Disorders 6 10-14-2009 11:55 PM
Help! My "good" kid won't stop lying! Mrs4wdCowboy Parenting Issues 7 04-07-2008 03:05 AM
Thoughts: Determining If A Doctor/Facility Is "Good" lizzybrog80 Back Problems 5 02-20-2008 10:31 AM
Progress after 6 weeks. AND Do guys like "good" girls? US40126 Relationship Health 15 07-20-2007 09:36 AM
Anxiety over "Good" Things CrazyLife414 Anxiety 6 06-03-2007 11:28 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 01:41 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!