MaryJanesFarm Farmgirl Connection
Join in ... sign up
 
Home | Profile | Register | Active Topics | Members | Search | FAQ
Username:
Password:
Save Password        REGISTER
Forgot your Password?

 All Forums
 General Chat Forum
 Hogs & Quiches & Prayers Round-up
 Farmgirl Support Group For Illnesses of Dementia!
 New Topic  Reply to Topic
 Printer Friendly
Previous Page | Next Page
Author Hogs & Quiches & Prayers Round-up: Previous Topic Farmgirl Support Group For Illnesses of Dementia! Next Topic
Page: of 4

darlenelovesart
True Blue Farmgirl

6331 Posts

darlene
Loleta California
USA
6331 Posts

Posted - Jul 20 2016 :  9:24:19 PM  Show Profile
My prayers continue Nini, I pray that understanding will come to you as well, Blessings and comfort and know God is right there for you.

Love and blessings

I have learned that to have a good friend is the purest of all God's gifts, for it is a love that has no exchange of payment.
by Frances Farmer

Just follow God unquestioningly.
Because you love Him so, for if you trust His judgment there is nothing you need to know.

I trust in you Jesus...
Go to Top of Page

Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Jul 21 2016 :  06:17:30 AM  Show Profile
Nini -- I think that flat affect is part of the illness. I can see even in pictures sometimes when my mother is just not there. I saw her sit and puzzle over a sales postcard she had received in the mail one time -- she frowned and kept turning it over and over and stared and stared at it. I asked what the deal was, and she just tucked it under the cushion of her chair and said she wanted to show it to Daddy later.

Hoping you and your husband have an easier day today. I had my mother out shopping at Penney's one time at the very early stages of her dementia, when nobody wanted to admit that she had problems -- least of all Daddy. She was being so cranky and stubborn about picking out some pants (the same pants that she has worn for YEARS!!!). I went over to the sales lady, who was a mature woman, and mentioned that my mother had some dementia problems and was having a hard time being happy with what I was choosing. This wonderful lady came swooping over and fawned all over my mother and helped her choose the colors, etc. Even got her to try on a couple of tops that I had picked out. Finding a waitress or a salesperson or whatever service person who is patient and kind and understanding is worth so much!!!

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
Go to Top of Page

Beverley
True Blue Farmgirl

2707 Posts

Beverley
atlanta Michigan
USA
2707 Posts

Posted - Jul 21 2016 :  6:35:52 PM  Show Profile
Anymore if I take my dad out to eat I just order for him something I know he still likes. He can not even answer if I ask him and only give him 2 choices, so, I just order and he eats it cause I know what to order that he will eat. So, yes it does get worse and it makes it hard to go out to eat but I still take him time to time.

Folks will know how large your soul is by the way you treat a dog....Charles F. Doran
beverley baggett
Beverley with an extra E...
https://sites.google.com/site/bevsdoggies/
http://bevsdoggies.blogspot.com/
Go to Top of Page

Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jul 22 2016 :  08:22:13 AM  Show Profile
Marilyn - I love that story about the sales lady! What a wonderful blessing to have had such a wonderful person help you like that! Things can get pretty sticky sometimes, can't they? It's so hard. And the stone-faced thing makes it so difficult to read my husband at times. Even our friends and neighbors always ask why he is so angry, or if he's angry with them. He's not - it's just the way he looks. But even when you're around it all the time, it's hard to take. Sometimes I tell him to smile, and then he forces this really weird wide-eyed pumpkin-face smile and makes me laugh. At least he tries! ;)

That is such a good idea, Beverley! I honestly didn't expect this to happen with him, but it's evident I need to be prepared. I don't want to do anything to upset him or make him more self-conscious, but I think just picking out a couple of things on the menu would be harmless and helpful at the same time! I'll definitely try this the next time! Thank you!

Hugs -

Nini

Farmgirl Sister #1974

God gave us two hands... one to help ourselves, and one to help others!


Edited by - Ninibini on Jul 22 2016 10:22:56 AM
Go to Top of Page

Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Jul 22 2016 :  09:38:36 AM  Show Profile
Nothing to add today. Emotionally barren right now.

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
Go to Top of Page

Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jul 22 2016 :  10:25:33 AM  Show Profile
Marilyn, I'm saying an extra prayer for you today. Doesn't it sometimes feel like our emotions need a day off, too? Don't worry... The light always follows the darkness, flowers grow and bloom after a storm. Fresh air and sunshine are on the horizon. Please just be kind to yourself and take time to just breathe. We all need that every once in a while. Love and hugs - Nini

Farmgirl Sister #1974

God gave us two hands... one to help ourselves, and one to help others!

Go to Top of Page

Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jul 22 2016 :  10:26:21 AM  Show Profile
Ohmygoodness - and Darlene... Thank you! Love you, my friend! Hugs - Nini

Farmgirl Sister #1974

God gave us two hands... one to help ourselves, and one to help others!

Go to Top of Page

Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Aug 03 2016 :  09:09:39 AM  Show Profile
My husband has been very agitated again this week. He says he is useless, can't figure out what to do with himself. I have offered ideas as to little projects to try, or things to occupy his time, or places we can go visit or activities to do. He is a HUGE "Star Trek" fan, so I thought he might enjoy going to see the movie, but he said no. He just keeps saying he doesn't know what to do. And when I tend to my responsibilities, he seems to resent that I am busy. It's so hard. He has pretty much given up all of his favorite hobbies and pasttimes, too, which is heartbreaking. He was always an avid reader, but now won't read books. He will pick up a newspaper, but puts it down shortly after grazing the headlines. I asked him if he is having difficulty reading, but he insists he isn't. He projects a lot of his frustration on me, trying to say it's my fault he can't do stuff. I shared with him that I am concerned that it is his own fears that are preventing him from enjoying things. This past year he has been shocked to learn that he can't do a lot of things that he used to, and that is making him afraid to try at all. In other words, if he tries to do things he might find out he cannot do them and that will make him more afraid. I'm not communicating that properly, but when I said it to him, it made a lot more sense. Anyhow, I am trying to drive home that yes, he does have some deficiencies, but he is far from being an invalid and he is still doing pretty well, all things considered. I told him we have to try to exercise the healthy parts of his brain to keep them strong, vibrant and limber. I said try not to allow himself to see the cup as half-empty, but rather as half-full, and just sit back and sip and enjoy! He looked at me like I had two heads at first. I just told him that there are still a lot of things he can do and enjoy, and that we just have to figure out what to do to make him feel happy and productive. He just keeps saying he has no joy; nothing makes him feel happy. He keeps saying he doesn't know what to do. He said he has like this mental block where everything is blank and he can't figure it out. He can't figure things out anymore. I got so choked up when he said that. He was like a scared little boy. He really is afraid of what is happening, but he can't put it into words. He is scared. He doesn't feel happiness. How can I tap into that and help him? Is it there and it needs to be unlocked, or is it gone? Break my heart!

Do any of you go through this? What kinds of things do you do with your loved one to help them enjoy life? How can I help him tap into the joy and make things fun for and/or meaningful for him? I would give my eye teeth to see him grin and hear his hearty laugh again... I feel so bad for him, and I feel like I'm losing him. If you can, please help!

Love and hugs -

Nini

Farmgirl Sister #1974

God gave us two hands... one to help ourselves, and one to help others!

Go to Top of Page

Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Aug 03 2016 :  11:28:01 AM  Show Profile
Has the doctor prescribed anything for depression? Some of the symptoms at these early stages get glossed over and lost in the mix and some are actually depression. It makes sense, when you think that he is losing so much independence and that IS scary. Sometimes I think people who suffer from dementia are much happier later on, after they don't really understand any longer what is happening.

Having said that -- we have gone through many of these issues with my mother. She used to read -- a lot. She kept a journal. She crocheted and quilted and worked puzzles. We started to notice earlier on that she wasn't reading for pleasure anymore. I related the episode I saw -- where she was obviously not able to sort out everything that was on an advertising postcard. When my dad started to notice that she wasn't reading anymore, he started reading to her at bedtime. He would read a chapter of something light that they both enjoyed -- they read humor books that had essays -- Pat MacManus, Erma Bombeck -- just light stuff that they would both enjoy and that was familiar. Then he would finish with a chapter from the Bible. My mother has always used the Bible and religion as sort of a "shield" to pretend that she had faith. My father actually does have great faith, so he would choose a familiar chapter and that seemed to be soothing for her.

As her dementia progressed and she became less able to busy herself, she started clinging to Daddy -- she would wake him up in a panic if he fell asleep -- just sat next to him on the couch and leaned on his shoulder for hours. He couldn't go to the store without her -- couldn't play golf with my brother -- couldn't do a household project without her making a big fuss and he finally just quit trying to get anything done.

For a long while, she liked to go back through and read her old journals. They were very mundane, every day entries -- so and so was at the dance tonight, we had this and that for dinner -- nothing really, but I think they jogged her memory enough and were familiar enough that they seemed to give her a lot of pleasure. If we were all sitting in a room talking, she couldn't really think quickly enough to enter in to a conversation (which was totally UNlike her old self!!!!), so she would go pick up a journal and start paging through...sighing "So many are gone -- so many are gone." When she got to where she couldn't read the journals, she started keeping photo albums around -- lots of pictures of the great-grandchildren, etc. She gets very confused about which generation people belong to, but we just answer her a dozen times and it certainly doesn't cost us anything to do so. The photo albums are still giving her some pleasure and keeping her somewhat entertained. She has completely quit the crocheting and all, though -- just doesn't have the attention span for it anymore.

When she gets uptight and restless (which is, thank goodness, somewhat less often now that they are medicating her better), she gets up and starts pawing through drawers or her purse or something or other, so the staff and I talked it over and have tried to make sure that she has -- oh how I hate to say this -- but it's a "Busy Box," really. Honestly, it just has to be a container of some sort with lots of familiar objects in it. We change out the things from time to time, but there are some little plastic pill cups, some fabric flower clip thingies, some hair rubber bands, a couple of pretty greeting cards -- just nonsense stuff. For a man, I suppose you'd want to put in screws and nuts and little hardware store junk. The idea is that they can spend time sorting through the stuff and it keeps them connected to something familiar from their "real" life. I have seen Daddy say that he found a bunch of stuff in his nightstand but wants Mother to go through it for him and then he gives her the box full of things. She is happy as a clam to be doing something useful. Sigh.

It sounds to me like your husband really is expressing himself to you quite a bit and that you are able to at least talk about it with him. My dad has just covered up for Mother and been in such denial -- I don't think it helped them deal with it in the long run. Everything just stayed hidden behind some kind of ridiculous "shame" where nobody got any help. Now that he is so weak and ill, she is too far gone for him to cover for her anymore. I am so grateful to the wonderful staff at their home -- they are so patient and understanding, and they have programs for crafts and music and all kinds of things that help keep her occupied. That's really key right now.

If your husband likes music, maybe having something familiar playing would help. I have heard that it's like starting over every day, and that you are on a first date brand-new every single morning. I think the important thing going forward is for YOU to find the joy, even if you have to manufacture it for yourself. I will be thinking of you.

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
Go to Top of Page

Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Aug 04 2016 :  06:26:40 AM  Show Profile
Hi Marilyn - Thank you for these ideas, they are really great! I am definitely going to keep them in mind as we proceed down this path. I like the way these activities help the patient maintain a sense of connection. The one thing I keep saying is that I want to help him make the connections, because they seem to be so out of his grasp at times. Thank you, REALLY!

Yes, he is on a couple of different medications for different symptoms, including depression. Of course, I agree, he is definitely depressed. In all honesty, he DOESN'T express himself to me very much or very well. It's like pulling teeth trying to get him to explain how he is feeling or what he needs or what he is trying to say most of the time. He does listen, and when we try to address something from several different angles, eventually he is able to find a way to say what he means. That is not to say he is totally incapacitated - not at all. He is just sliding down that slope. It's frightening as all get to me, believe me. Sometimes he is more talkative, especially around other people, but I really think that's him putting his best face forward to avoid drawing attention or feeling embarrassment. His cousin is a nurse who deals with dementia patients. She said she sees that all the time where the patient is really good about hiding things from other people, but at home they are very different, very altered. She said that's why it's so hard on families, because until the doctors see it for themselves, it's so hard to diagnose. ANYHOW, like I said, he is having more and more difficulty hiding it from anyone. His counselor has been seeing him for three years, I think, and didn't start seeing his behavioral issues until just a couple of months ago. His reaction to me was how sorry he was because he had never seen him like that before. The gist of what he said was that if what he saw (the raging) was what our son and I have been trying to express to him all of this time, if we were going through this all the time at home, it must be hell, and he just had never seen any indication of it until now. Since that time, my husband has gone down hill significantly. His doctors have now started to see the changes in him, thank God. He does still lash out irrationally at times, but now he hardly communicates at all. Most of the time he just stares and I have to ask him to respond. And I cannot even begin to tell you how many times in a day he says to me, "I don't know." Or how many times in a day he will ask us to repeat (several times) what we said because, he says, he "didn't hear" us. Truth be told, he mentioned to one of the doctors that he can't always put the words together to make sense of them. So when he says to me he didn't hear me, I feel like he is just asking me to repeat it until he makes sense of it.

It's very difficult not to become frustrated sometimes, but I realize this just isn't him. Thank GOD the doctors have been able to help me realize what is happening. Sometimes he does or says things that would be so frustrating if he were of healthy mind, you know? And the worst part is that sometimes I just don't recognize it as being an illness-linked behavior, if that makes sense. Sometimes he does things repeatedly before it dawns on me that he's having a real problem. I wish he could just tell me. I absolutely realize sometimes he just can't tell me; but I also recognize that sometimes he is hiding behind his pride and won't be honest with me - a self-preservation kind of thing. What man wants his wife to see him differently, after all? He knows he can trust me with anything, but he also needs - and deserves - his dignity. I just don't make a big deal out of it when I'm with him; although when I'm alone, it brings me to tears to think what he is going through. Mercy, Lord... Have mercy. He was always such a strong man, a hero, a life force... If everyone else sees he is having difficulties, how much more does he? I think you are so right what you said about people with dementia being happier in some ways when they don't understand what is happening... Then again, do they actually not understand? Or is it more like they're trapped inside... My head spins over how to help him through this journey.

They say that this is the most rapid of dementia diseases. I don't really have anything to measure it by, but I do know that when we were at a couple of different gatherings recently, people kept commenting about how much he has changed or kept asking what happened to him. So hard. You want to answer, but you want to be careful not to let him hear and feel bad, and you don't want people to treat him differently. People are pretty good about that, in general. But he sure has a keen sense of what is going on, and he sure can be offended and hurt quite easily. I want to fiercely protect him on the one hand, and on the other I want people to understand so that they don't make him feel more self-conscious. It's truly a very difficult line to walk at times. Sometimes he says he knows he is having problems, but most of the time he insists he is fine. We know different. I think deep down, he does, too. He isn't nearly as altered as he will be one day, but he is still altered. The main thing is, like I said, to help him see his cup as half-full, to keep exercising the healthy parts of his brain, to help him feel productive and to help him find joy. Most of all, I want to always ensure he is treated with the dignity and honor he so greatly deserves.

Hugs -

Nini

Farmgirl Sister #1974

God gave us two hands... one to help ourselves, and one to help others!


Edited by - Ninibini on Aug 04 2016 06:30:24 AM
Go to Top of Page

Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Aug 04 2016 :  07:11:33 AM  Show Profile
Nini -- My heart hurts for you. I have often wondered the same thing about people with dementia -- how much do they know on the inside of their brain? We know there's a disconnect somewhere, but where? Kind of like when people have had a stroke and they can't speak -- I know they get frustrated when they can't make the words come out, because they know inside their brain what they want to say. I am seeing that my dad is just speaking less since he had his little stroke, because he knows that his words aren't just exactly right sometimes. (Also possibly because he can't get a word in edgewise around my mother -- ha!)

I have to tell you a little funny about my mother. I spoke to her yesterday afternoon. She was going on and on about Daddy trying to hold a Bible study there at their home. Well, several ladies came but they just wanted to yammer and she and Daddy were the only two people who had even brought a Bible --- she said she "shouted them down" a couple of times because they weren't being serious enough. (Daddy's voice has never been particularly loud, and it's pretty thready these days). She went on and on about these ladies chattering away while Daddy was trying to lead the group --- then she said "But I am trying not to be too bad, because I don't want them to move me to the other part of the place where they keep the fuss-budgets!" Oh how I laughed at that. She has been an A-1 fuss-budget since she was born. The Queen of fuss-budgets! She is too funny sometimes.

This frontotemporal dementia is a different animal altogether, isn't it? Lots of people with Alzheimer just get sweeter (or more nasty) or whatever, but this kind seems to build some kind of stone wall between that front part of the brain and the rest, and it changes everything. I am so glad that your husband's counselor has finally seen what's been going on. The stone wall in his brain has also built a stone wall between you and the rest of the world who couldn't see the difference in your husband's behaviors. The up-side is that now you can take your part of that wall down, as other people can hopefully understand a bit about what's helpful and what's not and what's actually going on in your husband's brain. I always try to make a distinction between the mind and the brain. All the old behaviors that were guided by the mind are now being obstructed by the brain, which is a biological organism, and can't be helped.

I am hoping that you can find some kind of support group to help you while you make this transition with your husband. You always have us.

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
Go to Top of Page

Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Aug 11 2016 :  06:13:33 AM  Show Profile
I have a heavy heart this morning. Our dear friend who suffered with frontotemporal dementia took a tumble down some basement stairs last night and has passed away. It is just so stinking unfair that she should pass this way after suffering through the indignity of this horrid disease. I am so angry and sad and upset. Her family had promised to keep her at home, and they were able to do so, but she would get up and wander during the night sometimes, and I guess that's what happened last night. We had all hoped that she would be allowed to pass in her sleep quietly and with her family who loved her at hand. Today I am just hating the whole rotten disease and everything that goes along with it.

Hold your loved ones close.

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
Go to Top of Page

Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Aug 11 2016 :  06:34:53 AM  Show Profile
Oh... Marilyn... My heart is breaking for you, and all of her loved ones. I am so, so, SO sorry. My prayers are with all of you.

I hate it, too. I hate everything that causes suffering and robs us of life and joy. But this? This is just... There are no words.

I'm holding YOU close in my heart today. Love you dearly, sister.

Hugs -

Nini

Farmgirl Sister #1974

God gave us two hands... one to help ourselves, and one to help others!

Go to Top of Page

Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Aug 11 2016 :  08:24:32 AM  Show Profile
Thank you, Nini. Sad day

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
Go to Top of Page

ceejay48
Farmgirl Legend/Schoolmarm/Sharpshooter

13370 Posts

CeeJay (CJ)
Dolores Colorado
USA
13370 Posts

Posted - Aug 11 2016 :  10:24:40 AM  Show Profile  Send ceejay48 a Yahoo! Message
Marilyn,
I'm so sorry to hear your news! So devastating for her family and for you! So many things are terribly painful and tremendously hard to comprehend.
Sending hugs and prayers your way!
CJ

..from the barefoot farmgirl in SW Colorado...sister chick #665.
2010 Farmgirl Sister of the Year
Mother Hen: FARMGIRLS SOUTHWEST HENHOUSE

my aprons - http://www.facebook.com/FarmFreshAprons

living life - www.snippetscja.blogspot.com

from my heart - www.fromacelticheart.blogspot.com

from my hubby - www.aspenforge.blogspot.com
Go to Top of Page

ceejay48
Farmgirl Legend/Schoolmarm/Sharpshooter

13370 Posts

CeeJay (CJ)
Dolores Colorado
USA
13370 Posts

Posted - Aug 11 2016 :  10:26:07 AM  Show Profile  Send ceejay48 a Yahoo! Message
And, Nini, I continue to lift you and your hubby up in prayer, knowing that our God knows! I wish there was more that I could do, but prayer is powerful!
HUGS, LOVE and PRAYERS to you!
CJ

..from the barefoot farmgirl in SW Colorado...sister chick #665.
2010 Farmgirl Sister of the Year
Mother Hen: FARMGIRLS SOUTHWEST HENHOUSE

my aprons - http://www.facebook.com/FarmFreshAprons

living life - www.snippetscja.blogspot.com

from my heart - www.fromacelticheart.blogspot.com

from my hubby - www.aspenforge.blogspot.com

Edited by - ceejay48 on Aug 11 2016 10:26:22 AM
Go to Top of Page

Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Aug 11 2016 :  11:10:25 AM  Show Profile
Prayer IS powerful, CJ! Thank you, my friend. Please know I do pray for you every day, too! Love you! Hugs - Nini

Farmgirl Sister #1974

God gave us two hands... one to help ourselves, and one to help others!

Go to Top of Page

Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Aug 12 2016 :  06:17:17 AM  Show Profile
Spoke to my mother while riding home yesterday. She was rambling quite a bit, until she settled on tearing my brother up for a while -- she always warms up all her cylinders when she's criticizing! Brother is just the closest, so he was getting the worst of it -- she has to have a villain -- always has.

She was complaining (then she says "We try not to complain.") about their assisted living facility. One of the reasons it was so important for them to move there was that she was not getting her meds OR my dad's meds in a timely manner, nor was she taking what had been prescribed. Now that they are in this home, the staff takes care of all of that, and they are getting what their doctor has ordered. I can tell she is not as agitated and flying off the handle all the time, she is sleeping at night, and her intestinal tract is not giving her so much trouble -- and I am quite sure that it is partly because she's getting the medicine.

A couple of years ago, her doctor had prescribed "something for her memory." It was Aricept, for the dementia. Well, being my mother, she didn't want to spend the money on it, so she didn't take it and started taking this Prevagen nonsense, which is one of the worst of the worst patent "medicines" being advertised and marketed to older people on TV, etc. The FDA has even issued warnings about it, because of some of the side effects. The "active" ingredient is a synthetic form of some kind of jellyfish extract that is purported to improve mental function. Because it is synthetic, it is actually supposed to be categorized as a drug and regulated, but it has not yet been. The "active" ingredient that is supposed to do so much good is completely broken down and absorbed through the digestive system, anyway, so none of it gets to the brain where it is supposed to do so much good. Absolutely NO independent clinical trials for this garbage, either. But Mother insists that "she has gotten a lot back, and your dad can tell the difference," so she thinks it is magic ( Then she turns to me and asks "Is Amy YOUR daughter or MY daughter?"). Well, when they moved to their new home, the rule is that they can't take ANY supplements on their own -- everything has to be given out and regulated by the staff. Makes perfect sense to me. They are there because they needed the help, after all. So of course my mother is all upset that she's not getting her magic pills anymore. Her doctor's prescription, however, IS being given to her daily, but of course she has no idea which pill that is when it comes to her in the afternoon. So she goes out to the drug store the other day and buys a whole big supply of this Prevagen crap and squirrels it away in her purse. She went to her doctor and he said he has prescribed her "memory pills" and that she is getting them from the staff daily. So now she's all upset that she has so many of these magic pills and that the staff "just messed everything up!"

I tried to urge her, very gently, NOT to take the pills that she bought, but maybe to return them, unopened to the drug store for a refund. (Usually citing money savings will bring her around) I don't want to rat her out to the staff, but she needs to NOT be taking that garbage. Another reason I am so glad that they are in their new home. Her doctor is very happy, as well. He could NOT get her to understand that she needed the actual medicine, not the herbal-shmerbal stuff, and that Daddy needed to eat actual nutritious food on a regular basis, not McDonald's whenever she remembered that they needed to eat.

My brother is doing his level best to take care of their needs that are not covered by the staff, but all he gets from my mother is hateful harping. She is convinced that "He PUT us in here!" when in reality, my dad went to my brother and told him they needed to go into assisted care and asked if he would please make the arrangements. So whenever my brother and his wife want to take off for a couple of days to go camping or hiking, my mother starts up fussing about how they are out "Picnicking!" and carrying on like they are satyrs on some kind of bacchanalia.

Anyway, I know you all are going through this same kind of thing -- and much much worse -- I just felt the need to unload this morning, I guess. Glad I don't live close enough to bear the main burden, but I feel guilty that I am so far away. Does that even make sense?

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
Go to Top of Page

Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Aug 16 2016 :  10:28:17 AM  Show Profile
My newly-widowed friend stopped by the shop this morning. He is doing okay, but experiencing his moments, as you might imagine. We agreed that this was NOT how we hoped the whole story would end, but he is trying to be comforted that she died without pain, the trauma was pretty immediate. He said she took her tumble at about 10:30. He called EMS right away. He had to stay with her for a very short while before they arrived and said that she was bleeding a lot from her injuries, but that she was obviously unconscious. They just stabilized her neck and spine at the house and took her right to the hospital, where she was pronounced at 1:38 in the morning. He is second-guessing himself a little bit about the cellar stairs, but he said they had just never been an issue before. I told him that he had done everything but wrap her in bubble wrap and that it was why they call them "accidents." It could honestly just as easily have been him falling down those stairs, or her 10 or 15 years ago -- just an unhappy accident.

Now he is trying to adjust to living without her -- even in her changed state. He says that sleeping is hard -- he is so used to listening for her footsteps as she wandered the house at night. He has work to do, which is his lifeline right now. He says he feels that he has aged 20 years in the past 2 -- I really think he will start to bounce back a little now that the weight of full-time caregiving is gone. He is the director of our local senior center, so he knows all about the grieving process and is ready to push through it. He has been very very sad for a long time.

I think he will be okay.

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
Go to Top of Page

Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Aug 23 2016 :  07:29:13 AM  Show Profile
Fighting depression here. A dear sweet cousin of mine was recently diagnosed with colo-rectal cancer, and I have been thinking an awful lot about her. They have a treatment plan laid out already and all of the tests that COULD be positive news are coming back positive news -- no lymph involvement, no cancer anywhere else -- but she has been on my mind. My dear Daddy has failed so much that it is difficult to have a conversation with him, so that's on my mind as well. And of course my mother continues to be a challenge with her dementia.

My widowed friend is doing very well -- he is staying very very busy, and that seems to help him. They had to wait for the Catholic church to do a memorial service, so that won't be until after Labor Day. In the meantime, they donated her brain to a university research lab that has been studying frontotemporal lobe dementia. Some benefit there.

But my silly brain tends toward depression anyway, and I am dancing as fast as I can to avoid letting it get to me this time. I just don't want to go down that particular hole again.

I hope everyone else is having positive times. A dear friend of mine whose husband has Alzheimer posted on facebook over the weekend that she told him she weighed 55kg and he was able to convert it to pounds! She was over the moon. Life's little victories!

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
Go to Top of Page

Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Aug 23 2016 :  10:54:47 AM  Show Profile
Oh, Marilyn! Please know I am praying for you and sending spiritual hugs... I have been so busy with appointments and family functions that I haven't really had time to come on and respond, but I will. You have been so greatly on my mind lately. So much to hit all at once. I'm so sorry. I will be praying for your cousin, your Dad and Mom, too. I'm so glad your cousins tests are coming back positive - that's a good thing for sure! :) Love you, sister. Stay strong. Hugs - Nini

Farmgirl Sister #1974

God gave us two hands... one to help ourselves, and one to help others!

Go to Top of Page

ceejay48
Farmgirl Legend/Schoolmarm/Sharpshooter

13370 Posts

CeeJay (CJ)
Dolores Colorado
USA
13370 Posts

Posted - Aug 23 2016 :  11:17:32 AM  Show Profile  Send ceejay48 a Yahoo! Message
Marilyn,
I'll be praying for your friend as he goes on this very difficult journey. And, for you as you support all those folks in your life.
Hang in there dear friend!
CJ

..from the barefoot farmgirl in SW Colorado...sister chick #665.
2010 Farmgirl Sister of the Year
Mother Hen: FARMGIRLS SOUTHWEST HENHOUSE

my aprons - http://www.facebook.com/FarmFreshAprons

living life - www.snippetscja.blogspot.com

from my heart - www.fromacelticheart.blogspot.com

from my hubby - www.aspenforge.blogspot.com
Go to Top of Page

Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Aug 23 2016 :  11:38:20 AM  Show Profile
Can I just say how much I appreciate having found this group? I am not happy that we all are having these experiences -- life would be so much easier and more pleasant without them. But it is nice to have a place where you can say what's going on and know that other people understand and won't judge. It is wonderful that we can support one another.

Nini -- Thanks for the kind words -- I was glad to see you here -- been hoping you were just busy with good stuff!

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
Go to Top of Page

craftingram
True Blue Farmgirl

521 Posts

Karin
Nashville In
USA
521 Posts

Posted - Aug 24 2016 :  07:29:56 AM  Show Profile
Marilyn, I have not seen this forum in a couple of weeks. Just wanted to let you know I am so sorry about the loss of your friend, your cousin's diagnosis, and your dad's declining health. I know this is all very difficult for you and am keeping you in prayer.

Karin
Sister #2708

Romans 8: 38,39
Go to Top of Page

violetrose
True Blue Farmgirl

960 Posts

Ruth
Epworth GA
USA
960 Posts

Posted - Aug 25 2016 :  2:53:47 PM  Show Profile
Marilyn, Know you are in our prayers! Try to find some positivity every day somewhere! We have much to be thankful for, but sometimes, it hard to see those things when there is so much hurting and negativity around us. And there is a lot of that in your life right now, which is so very hard. Making a list of things to be thankful for helps me when things seem to overwhelm me.
Nini, you and your family continue to be in my prayers!
hugs and prayers,
Ruth

Farmgirl Sister # 1738

God loves each one of us as if there were only one of us!

St. Augustine
Go to Top of Page
Page: of 4 Hogs & Quiches & Prayers Round-up: Previous Topic Farmgirl Support Group For Illnesses of Dementia! Next Topic  
Previous Page | Next Page
 New Topic  Reply to Topic
 Printer Friendly
Jump To:
Snitz Forums 2000 Go To Top Of Page