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 Farmgirl Support Group For Illnesses of Dementia!
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Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jun 24 2016 :  07:19:02 AM  Show Profile
Hi girls!

Welcome to the Farmgirl Support Group for those affected by Illnesses of Dementia! Whether you’re a caregiver, a loved one, or even the patient, this is just not something any of us should go through alone. Here is a friendly place where we can all come together to lift each other up as we finagle our way through this tangled web of illness, caregiving and support!

This strain was inspired by our farmgirl sister Peggy, whose husband, like mine, was recently diagnosed with Frontotemporal Lobe Degeneration (a rare form of aggressive dementia). Horrible, horrible, horrible. After sharing a little bit of our stories, Peggy commented how we should start a thread for people dealing with this. Amen, Peggy! How right you are, as usual! Awesome! Big hugs to you, Peggy!

Further inspiration was our farmgirl sister Marilyn, who has dear friends who are going through this. She has seen first hand the devastating impact of this disease on the patient, on the caregiver and on those who love them. She understands the difficulties we face; but she also understands the difficulties experienced by the loved ones who want so desperately to help, yet feel awkward or perhaps even inadequate to do so. As we all know, dementia affects everyone who cares.

Although the disease that has brought the three of us together is FTLD, it is only one of several types dementia such as Alzheimer’s, Parkinson’s, Lewy Body Disorder, and Huntington’s Disease, to name a few. All have similar symptoms including confusion, difficulty with communication, poor judgment, mood and personality changes… but there are definitely marked differences as well. The one thing we all know is that it’s not going to get better, and it can be extremely overwhelming at times for EVERYONE involved. As we move forward through this journey, we need help. We need a lot of unconditional love and support. We need suggestions as to how to help and how to cope. We need help recognizing what is actually happening to our loved ones as the symptoms come; we need help understanding, and, especially in separating the person from the dementia. We need compassion, and we need to be compassionate. We need to weed through all the information, advice and suggestions, in order to make sound decisions that best fit our own situation. We need assistance with finding appropriate medical care and maneuvering through the medical system and lingo. We need to learn about legalities and end of life decisions. Perhaps we even need help understanding insurance issues. The main thing is, sometimes we just need someone to talk to, and safe place where we can just "be." This whole experience can be extremely overwhelming at times, especially when you feel so isolated and responsible to take care of everything yourself. But the good news is we’re NOT alone. We’re never alone. We’ve got each other. MJF Farmgirls are the best people out there when it comes to love, support, caring and sharing!

It sure isn't easy opening up about things like this; however, knowing there are other farmgirl sisters out there who really understand is such a relief. Suddenly things seem a little more bearable, to me; a little less scary. Personally, I don’t feel quite as isolated and all alone anymore. The load of this burden doesn’t seem quite so heavy. I actually feel like I can breathe a little easier. I want THAT for everyone! SUCH an amazing feeling to be so blessedly FARMGIRL equipped to face whatever comes! Together, we truly are Farmgirl strong!

So, please jump right in: Share! Commiserate! Ask! Educate! Rant! Cry! Heck, it’s even okay to LAUGH a little! Whatever you need to get off your chest, whatever you want to know more about, whatever important information or insight you want to share: that’s why we’re coming together here. We will be strong for each other, especially when some of us just don’t have any strength left. Just remember: no matter where you are in this, no matter what you are going through, we’re all in this together.

Thank you, and God bless you, MaryJane, for this amazing sisterhood of sharing and caring! How many times have I felt: what would I ever have done were it not for our beloved MaryJane!

Now, let’s do what we farmgirls do best: share and care!

Big hugs and lots of love,

Nini


Farmgirl Sister #1974

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


Edited by - Ninibini on Jun 24 2016 07:35:29 AM

Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jun 25 2016 :  07:36:27 AM  Show Profile
Hi girls -

Instead of me starting by re-typing what I've already shared, if you would like to read up a little bit about my own experience, as well as Peggy's and Marilyn's, please visit this MJF link: http://www.maryjanesfarm.org/snitz/topic.asp?TOPIC_ID=76103

I just found out the other day that they don't even classify FTLD as a disease... Did you know that? Is that the same with the other types of dementia? How strange! I was so surprised! To me, if its a degenerative thing, it must be a disease. It sure looks like a disease. I don't know why that matters to me, exactly. I guess it's just because the changes we are experiencing are so profound.

My counselor cracked me up the other day. We were discussing notable, less than pleasant changes that my husband is undergoing. I told him that I just keep trying to tell myself that it's his brain, not him. My counselor said that he read it's very helpful for people to actually NAME the behavior. For example, instead of saying it's his brain, I could call it "Fred." And when that alter-ego behavior starts, I could just say, "Oh, here's dear old Fred again." I laughed. What a funny, funny thing to me! I love it! I told him "Fred" is the perfect name, especially for when my husband hollers. I mimicked Fred Flinstone, "Wiiiiiiiilllll-maaaaaaa!" We both laughed. In Fred Flintstone's defense, though, HE is actually a lot sweeter than our "dear old Fred." ;)

The changes we're going through... Oh my goodness...

Every day it's becoming more and more clear that I need to start a reference binder for our family. I started one a couple of years ago when I had to have a pacemaker installed; but life got busy and finishing it fell to the wayside. Now that my husband - my hero who has always taken care of everything from bugs and mice to home and auto repairs - is starting to have trouble even loading the dishwasher, it's becoming more and more evident that I am going to be in BIG trouble if left to myself to find help with things like this. Sure, I can set and unload a mousetrap. It may give me the willies, but I can do it. And I suppose I can put my big girl pants on and eliminate any stink bugs or spiders crawling around. I could probably change the oil and brakes on the van if I had to, too (Over time, you pick a few things up when your father was a mechanic and your husband is uber mechanically inclined.)... But fix a broken window? Repair a leaking commode? Snaking out the basement if it floods? Figuring out why the engine is ticking or the wheel is making a funny noise? I'd be at a loss. And although my husband has a cell phone full of friends who have always helped each other fix and repair things, and although I do know what some of them do and that they would help me, I honestly don't know EVERY person and what they do. I'd end up calling a professional and being at their mercy! That kind of freaked me out a little. Not only could it be expensive, I don't know enough about a lot of these things in order to make sound decisions and avoid being cheated! This morning I tried to discuss this with my husband. I asked him if we could sit down next week and add a list of "who's who and what they do" to the book. He took my question in stride, but he wouldn't commit. He said he is going to be around many, many years, and that I would be fine. I don't mean to sound insensitive, but: This from the man who couldn't figure out how to put dishes in the dishwasher. I don't want to upset or alarm him, so I think I may instead just ask him questions nonchalantly from time to time and try to figure out what needs to be done or who might be able to help me do it - even, perhaps, teach me how to do it myself. <sigh>

Do any of you have any type of book like that? I want to fill it with monthly to-do's, everyday tasks like banking (for my son, in case anything happens to me), all our documents, all the pertinent numbers, all the "who's who and what they do's," etc. What types of things do you put in your book? What types things do you think would be most beneficial to your family?

Before I go, I just want to say, no matter where you are in this as a patient, caregiver, or loved one: be kind to yourself. Just... be kind to yourself. I know you know what I mean. God bless you!

Love and hugs -

Nini

Farmgirl Sister #1974

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


Edited by - Ninibini on Jun 25 2016 07:38:44 AM
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Dapple Grey Lady
True Blue Farmgirl

670 Posts

Betty
Goodrich Texas
USA
670 Posts

Posted - Jun 25 2016 :  09:49:47 AM  Show Profile
Your book idea sounds like a good thing to do. I haven't ever dealt with any of what you all are going through and am sorry that you have to. {{{{Hugs}}}}

~ Betty ~
Farmgirl Sister # 5589
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darlenelovesart
True Blue Farmgirl

6331 Posts

darlene
Loleta California
USA
6331 Posts

Posted - Jun 25 2016 :  10:56:29 AM  Show Profile
Oh Nini, if ever there is anything I can do please let me know.

Reader's Digest has books out on DIY, for everything including basic plumbing or other things.
If I find anything else I will let you know. If you have any thing in mind email me and maybe I can research and find something or who knows maybe I have it here somewhere.

hugs, Prayers and Blessings.

love you Darlene

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...
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LadyInRed
True Blue Farmgirl

6740 Posts

PeggyAnn
Vancouver WA
USA
6740 Posts

Posted - Jun 25 2016 :  10:58:36 PM  Show Profile
Nini...Thank You Friend for starting this Thread...as it will be so helpful to have Sisters to share with, rant with, encourage etc.
I am at The Beach with my kids and grand kids until tomorrow...I have had 3 glorious days away and we go home tomorrow
But God has met us here, refreshed us here, and lifted our Spirits and refilled these broken vessels. Just what we all needed.
Thank You Precious Lord. I will hop back on here the next day or so.
Again Nini...thanks for hostessing this thread. You are a Blessing and we can all be a blessing to one another.

Love and Big Hugs,
Peggy

Farmgirl #1326
Dec 2011-Farmgirl of the Month
http://ladyinredsite.blogspot.com

Don't allow others to steal the Glitz from your *SPARKLE*

Life is too short to knit with ugly yarn!

Leave Your Cares Behind...Join Us On The Porch
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Killarney
True Blue Farmgirl

4338 Posts

Connie
Arlington TN
USA
4338 Posts

Posted - Jun 26 2016 :  10:10:35 AM  Show Profile
Big Hug and Prayers! My heart hurts for you and Peggy and Marilyn. I know a little of what your going thru. My paw-paw had dementia. It was hard to watch his mind slip away, our whole family supported my Aunt Anita who was the main caregiver, In 2003 she moved both my Grandparents in to her home, where they would be within 20 miles of all the family who lived here in Tennessee,when they were age 87 and age 85. My Granny at 85 took on a lot, then she began to get ill, not dementia. Family members took day, night shifts, and those who worked full-time took weekends. I did days when I could and pre-cooked meals, Ran errands for RX's. anything they needed even the young grandkids pitched in. They wrote the names of family members on sticky notes and put them on all the pictures around the house, so my pawpaw could see their names. My Granny died 3 years later from Pancreatic cancer and my paw-paw died 3 months after her.

Connie-Killarney
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Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jun 27 2016 :  07:55:48 AM  Show Profile
Good morning, girls!

Betty - Thank you! I think EVERYONE should make up a little book like that, don't you? You just never know when an emergency could happen... If you're down for the count, someone is going to have to do stuff like find the important documents, call certain doctors, make important phone calls, pay the bills on time, give the pets their medicines, figure out how to use that funky old dishwashwer... I'm sure you could think of many things that you do that someone else might have to figure out. I think that naturally most of us don't ever think about it until an emergency hits, though. It sure made me think! :)

Darlene - as always, you're the best, AND you're the best at finding the the best! THANK YOU! I can't think of anything off hand, but I will definitely let you know.. You're such a peach! I just love you!

Peggy - SO glad you were able to get away and stick your toes in the sand! Sounds like a lovely, lovely break, to be sure! I hate that we're going through this, but I am so thankful we can go through this together! BIG HUGS!!

Oh, Connie - I'm so sorry your family went through this. SO hard. I love how your family pulled together for your grandparents, though - that is wonderful! I love the idea of putting the names on the pictures! That was AWESOME!!! Thank you for sharing!

I have to correct my statement above: several websites DO classify FTLD as a disease! I don't remember which site I was reading that said it wasn't, but I'm sure glad to have clarified!

I also want to share a really good website I found to help with FTLD: www.ftlda.org LOTS of good information on that site. Their list of symptoms really threw me for a tizzy... My husband has most of them - maybe 4 or 5 haven't manifested yet! I can't help but wonder if he is a lot farther along in this than we realize. <sigh> I'm just taking this one day at a time. There's no point worrying and stressing over something that I can't change. I'm just going to take hold of what I can do, and enjoy the good times while they're still here.

My husband is starting to accept that he will never work again. I think that was the biggest struggle for him over the past year, but now that the doctor has made this clear to him, he isn't in denial anymore. He is also starting to recognize and admit his limitations. My concern is that he will just give up, but so far that doesn't seem to be the case, thank God. He seems to be taking this so much more in stride than I thought he would. It's weird, but definitely a blessing. Maybe it's just the medication keeping him calm... Or maybe this is just the FTLD, and he is losing his ability to care. One step at a time. I just have to keep reminding myself not to read anything into his behavior, and just take it all one step at a time.

Peggy, is your husband extremely stone-faced? My husband is... I used to think he was always angry at us, but now I am realizing it's just the illness. Trying not to let it get to me. He used to be so full of life and laughter. I kind of mourn that that part of him is slipping away. Lately neighbors and friends have noticed, too. One person asked me if he had somehow offended my husband - he felt really bad. I explained, no, not at all. It's just the illness. He has no idea he looks that way. He has no idea he doesn't smile anymore and looks so stoic. His friend was just so sad, saying he's just not my husband anymore, is he? I understood, but of course he is the same man... He is still in there. His brain just can't express what he wants to express anymore. At least, that's what I think. <sigh> I am really starting to realize how hard this is on everyone else, too. They just have to remember what they're feeling is nothing compared to what my husband must be feeling. I can't even begin to imagine.

Well, enough for now. Remember: Be kind to yourselves as you walk this path.

Love and hugs -

Nini

Farmgirl Sister #1974

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


Edited by - Ninibini on Jun 27 2016 07:57:50 AM
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Beverley
True Blue Farmgirl

2707 Posts

Beverley
atlanta Michigan
USA
2707 Posts

Posted - Jun 27 2016 :  8:21:47 PM  Show Profile
Wow, I love the idea of that book, never thought about it before but it is a very good idea. My father who is 89 and is in the late stages of Alhzheimer's and lives with myself and my husband. It is not fun! Let's just get that one out there. They gave him 2 years , 3 years ago. He still can stand up with a walker and can go from the chair to the bed or wheelchair. He is totally incontientant. Never thought I would be taking care of my dad that way! But, ya do what ya gotta do sometimes no matter how hard it is. He sometimes remembers who I am but mostly not. He looks at me like "Who are you." Like he is trying to search his brain for a recall that just isn't there. His drinks need to be mixed with a thickiner so, that he does not cough after he drinks. He sometimes coughs on food certain foods and other times eats really well. I do have a helper come in every monday to now give him a sponge bath. He can not tackle the side of the bath tub anymore where he used to get in and sit down on a shower chair and actually take a shower. She is very good with him. Soon I am going on a vacation with my grown children and grandchildren and I had to find a place for my dad to be able to go while I am away. I do not like to do that but this year I really need to do this. I feel like I am leaving a child behind and telling them they can't go. So, it makes me feel sad. My sister is in town here but to be honest she is more work than help. So, I hope she will visit my dad while I am gone but I can probable guess she might see him once maybe twice if I am lucky. She works full time and I know she does not want to give up her weekend to go visit him but we will only be gone 2 weeks, she could try a bit harder I think. My brothers are downstate which is a 4 hour drive and my one brother was his caregiver for 3 years while he was in an assited living. he lived 2 blocks away and visited him often. My other brother does take care of the financial end of everything for my dad but, did not visit him much even when my dad lived down there closer. So, thanks for letting me vent and I hope no one minds when i write on here about a bad day with him. I will also try and write about good days too. There are still some!! he amazes me sometimes by asking my granddaughter when she was up about her soccer playing? And asked her when we wre eating did she get enough? I almost feel on the floor out of my chair. he usually is not very talkative cause he gets in the middle of a sentence and says oh nevermind, cause he can not remember what he was going to say. and he amazes me when he asks my husband, hey where is Beverley? I am usually out feeding the chickens and I usually tell him first where I am going if he is awake. he does sleep alot. So, somedays he is still in there. I kinda anymore just let them come out when they do. I have seen other people ask there loved ones, Do you know who I am? Well to me that just frustrates both people cause if the loved one says no, then the other person says I am --- don't you remember? Just is better to take the amazing parts when it just comes out then try and make an amazing thing happen. I sew and it has been a life saver. I can stay in the house and work on things and he is asleep in the livingroom and I am right there incase he starts to have a coughing fit, but I feel like I am getting things done for charity or my grandkids and it keeps me busy. Love, Love, Love!! the fabric exchanges on here of the 10 squares!! I can do so much with them and have fun knowing farmgirl friends have sent them and I can send them to them as well. My mailbox is a haven of stuff from my farmgirl friends. hehehehehehehe A little surprise of fabric makes my day!! hehehehehehe If you ever thought about joining that swap. do so you will be very happy with the results. Well I have vented enough. I hope all of you on here have a wonderful 4th of July and remember God is with you always!!

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/
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darlenelovesart
True Blue Farmgirl

6331 Posts

darlene
Loleta California
USA
6331 Posts

Posted - Jun 27 2016 :  9:09:06 PM  Show Profile
Prayers for both of you beautiful people.
This has to be so hard for you both.
Take care

darlene

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...
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Bonnie Ellis
True Blue Farmgirl

2474 Posts

Bonnie
Minneapolis Minnesota
USA
2474 Posts

Posted - Jun 27 2016 :  10:57:43 PM  Show Profile
Nino, Marilyn and all involved. My prayers are with and for you. Don't forget Mary Jane, idea book as a source. Maybe someone from the church or volunteer org. Could help if asked. Just feeling so alone must be awful. But keep using this forum for support. God bless you.

grandmother and orphan farmgirl
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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Jun 28 2016 :  10:42:20 AM  Show Profile
I agree -- THE BOOK is a great idea for all of us to have! My sweetheart is several years older than I am and has always just assumed he would pass first. I do the bookkeeping for his family business and I have been after him for quite some time to write down what he would want me to do if he (God forbid) just didn't wake up some morning. I mean -- what do you want me to do with the business???? I think I would like to put together a guide book called "After The Ambulance Leaves" to address those specifics. (As far as getting rid of the spiders -- I would recommend a flame thrower, but that's probably just me)

My own relationship to FTLD is through a couple of good friends who are going through it. It is hard to watch him suffer through her decline, for sure. They were a love story come to life and he is caring for her very tenderly. She is in some of the latest stages of the illness and he is very tired and very sad.

My mother, on the other hand, has dementia. The doctor has told us that it is most likely Alzheimer, but it doesn't really matter what name you put on it. My mother was always physically and emotionally abusive to me growing up -- not to my brothers, but just to lucky only-daughter me. So when she started spitting and saying really nasty things, the doctors and caregivers just assumed that it was her disease. I sat down with the doctor and explained to him that she was always like that to me, so maybe it's just that the filters are coming off -- ha!

Therein lies my personal difficulty in dealing with my mother's dementia. This is a woman who regularly gave me enemas as punishment for perceived infractions of her many many Biblical rules. I would wake up in the morning and see that enema bag hanging over the shower head and think "I have to be really really good today. Don't do anything bad." But sure as the world I would goof up somehow and she would come after me with that horrid thing. I was attacked by a coworker of my father's when I was just under 4 years old. When I told my mother what he had done, she told me how bad I was, how dirty, how sinful (of course) and all the other adjectives she could come up with. She told me I was NOT to mention it to anyone, or my Daddy would not have any friends. Then she gave me my first ice water enema and put me to bed. From then on until I was about 8 or so, she used that blasted thing as punishment for any imagined infraction she could think of. Not sure why she quit -- maybe she thought I would tell? I don't know, and I don't really care at this point. I just know that it is very very difficult for me to feel loving and kind and caring for her at this stage. I know it must be desperately scary for her to know that she just can't remember things and sometimes doesn't know where she is. But when people from their church want to know why I don't fly 2800 miles to come sit and hold her hand for a week or two at a time --- well, it's just not something I can muster. So I have the guilt of being a "bad daughter" on top of the sadness of losing my dad to his cancer. There are days that I just want to sit in the dark and cry and I couldn't honestly tell you why or for whom. Not that it would do any good or change anything.

One thing that we have tried to do for Mother is to make "memory letters." I saw an exchange of Pocket Letters here on MJF and made up one containing little notes that started "Remember when we..." and told a little story about something that happened as we were growing up. How we shooed the bears off the porch when we lived on the chicken ranch. How she made snow cream as a special treat until the Civil Defense people started saying to watch out for nuclear fall-out in the snow. How my daughter used to eat her apples on the side of her mouth while she waited for her front teeth to come in. Both my parents loved the letter and my mother positively crowed -- "I remembered every one of them!" So now I always try to bring up something from long ago that I think she will remember, because that seems to give her some pleasure.

But I am still conflicted and I still feel sad and I still feel guilty for being "the bad daughter."

Sorry this post is such a downer -- I should probably delete it, but that wouldn't be honest.

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
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Beverley
True Blue Farmgirl

2707 Posts

Beverley
atlanta Michigan
USA
2707 Posts

Posted - Jun 28 2016 :  4:05:03 PM  Show Profile
Oh Marilyn, I am so sorry for what you went through as a child. that is called child abuse nothing else. I do not blame you for going and seeing her and I am giving you the "you do not have to feel guilty" speech. If I had had a mother who did those kind of things I sure would have never seen her again after i left, so, you have already been a good daughter as far as I am concerned. Please do not feel guilty at all!!! My dad was not always the nicest person when I was younger but with his dementia he actually nicer. so , it is easier to take care of him. I think it is because he really does not know who I am at this point. He was always nicer to people outside of the family. But as I got older and had kids he was very good to my kids so I believe I am just paying him back for that time when he was good to them and deserves to be taken care now. So, we all do what we can and for reasons other people may not understand, so, just do what is right for you and do not let other people make you feel bad!! god Bless you very much!!!


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/
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Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jul 05 2016 :  06:31:07 AM  Show Profile
Darlene and Bonnie - just love you and think the world of you both. Thank you for reminding me about MaryJane's books! I have them at the ready, and will definitely go back and see what I can find inside! Thank you!

Oh my gosh... Beverly and Marilyn... Where to begin?

Beverly, I think what you are doing with and for your dad is amazing. The hardest thing for anyone caring for a person who suffers with this is to remember that if we do not take care of ourselves, we will get sick - or even, Heaven forbid, perish - and then where will our loved one be? Please enjoy yourself thoroughly on your vacation with your family, and remember that you have chosen a wonderful caregiver for your dad. I know how hard it is not being able to take him along and have him share in the treasured memory-making, I do. But it's okay. When you come home, you can share stories and pictures, and even though he may not completely understand, he will get to enjoy these experiences through your eyes, sharing the joy and the excitement with him, if only for a short while. As far as family, you know, I totally get it. I wish I had great words of wisdom where your sister is concerned, but I don't. All I know is that some people just aren't cut out for dealing with stuff like this. Some people just have such a tough time dealing with the reality because it frightens them about their own frailty. Others just can't handle the emotional pain. Yet others turn away because they don't want to miss out on any joy in their own lives. And then, of course, we can never really know what has happened between two people that would cause someone to avoid someone suffering with dementia. There are so many reasons. It's not right, but we really cannot judge. I honestly think it's best to just accept that it "is." Sadly, what I've noticed, personally, is that these are the people with the most bitter tears when our loved ones leave this world - tears of regret, tears over the finality, etc. Our job is to pray for them, really. We have all the tough stuff, all the stress, all the worry, all the responsibility, and all the pain of watching our loved ones slip away; but we also get all those wonderfully unexpected moments, all those special quiet moments of loving, and all that wonderful time of just being with our loved ones. It is a trial beyond measure for us, but when the time of suffering is over, we really have a priceless treasure in our hearts that no one can take away. I truly believe those who turn away suffer an even more profound loss and grief. So sad. And you are absolutely right about asking, "Don't you remember?" or "Do you remember me?" My husband has moments when he just cannot remember things - not as profound as not remembering people, but things like conversations or things we've done. When we try to remind him, at first he becomes indignant, but I think that's more of a self-preservation mechanism. When we start to try to help him recall details, though, he sometimes gets such a shocked look over his face, like he is frightened. I don't want to frighten him, and the last thing I want to do is frighten him anymore than he already is. If he really can't remember, I just kind of blow it off as no big deal. Right now, I'd rather just have happy experiences. A lot of times I just smile and nod - something my mother taught me to do long ago. Much easier to do that, like you said, stress everyone out trying to help my husband remember. In the end, it's about what is really important. I've found myself "sucking things up" a lot more lately. It was hard at first, but gets much easier to do as time goes on. It keeps the peace, you know? Why disturb the peace, when it is so difficult to come by? ;)

Marilyn - my heart just broke for you when I read your post. I am so, so sorry. You are NOT a bad daughter. You cry for what has happened, you cry for the mother you needed (and deserved), you cry for the suffering, you cry for the loss... and you cry for that which cannot ever happen. I wish I could go back and rescue that precious little you AND your mother. You are such a lovely woman, and such a dear farmgirl sister. Look at the rose that you have become - fragrant, beautiful, warm and inviting! I am in awe of you, I truly, truly am. As far as being a "bad daughter," please don't do that to yourself. You are not a bad daughter. When someone has been burned, they learn not to go back and touch the flame. You are allowed to live a good life, to enjoy all the good things that God has in store for you. It would be kind if you could go visit her, but if you can't do it, accept what your heart is telling you to do. Sometimes we just have to love that little girl inside of our hearts enough to protect her from any more pain. Sometimes enough is just enough. I want you know you are not alone in any of what you are going through. I have been in a similar situation with my own father. Just remember love is a choice, not a feeling. It's always a choice. And love is something we can express in a multitude of facets. The kindest, most loving thing you can do for your mother right now is to pray for her. Pray for her comfort, her health, her care, her healing, her relationship with God, her forgiveness, for her soul and for her eternity. After all that has happened, that would be an expression of amazing love, and a reflection of all the goodness and love that is truly you. You are an amazing, wonderfully special lady, Marilyn. Never ever forget that, and never ever let anyone tell you anything different. It would also be a good thing for you to pray for yourself and that sweet little girl in your heart who is suffering so profoundly over the past and over what is happening now. You deserve all that is good, dear sister. I will be praying for you, and your mother, too. Whatever decision you make, know it's okay. Do your best, and give God the rest. Sounds trite, but that saying really helps me a lot right now. I'm here for you, sister. Love you!

Be kind to yourselves, now!

Hugs,

Nini

Farmgirl Sister #1974

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


Edited by - Ninibini on Jul 05 2016 06:32:16 AM
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Ninibini
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Nini
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Posted - Jul 05 2016 :  06:37:50 AM  Show Profile
Oh, and Marilyn - I love your idea of "memory letters!" What a great idea! In time, if your mother stops remembering,maybe their familiarity will bring comfort to her heart in some way, or the stories themselves will make her smile, even if she doesn't remember that they are part of her life. That's awesome.

And don't worry about being a downer. This whole dementia thing IS a downer - you are not. It's really cathartic to get it off our chests and know that we're not alone in this!

Hugs -

Nini

Farmgirl Sister #1974

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

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Marilyn Hartman Sullivan
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Marilyn
Oxford PA
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Posted - Jul 05 2016 :  08:13:19 AM  Show Profile
Nini -- Thank you for the kind words. Over the past few years, I have been able to find that little girl and tell her that she was pretty special, in spite of all the icky things that happened to her. She needed to hear it, believe me!

I was reading about some of the behaviors that Alzheimer patients might have, and Mother does the one where she paws through drawers or her purse or whatever -- looking for familiar things to help anchor her to the present. I think that's one way the memory letters might really help. My daughter is putting one together for her now -- lots of photos of my daughter when she was little - she's the eldest grandchild and the one who was closest to them, so hopefully there will be lots of good memories there.

My mother's sister, my Aunt Edith, went through the progression of dementia almost identically to the way Mother is. In the early stages, when she was still living in her little apartment at her son's house, she would call me just about every afternoon. She would tell me stories about our family from long ago -- most of them I hadn't heard. They were not all happy stories, but I felt that I was getting a real treasury of family history from her. I wondered later if she knew she was losing them and wanted to make sure somebody had them. As time passed and she began to be more paranoid and angry, she moved into a facility where she could have continuous care. She tried to wander off a couple of times -- some high school boys found her outside in some bushes as they were on their way home from school one day -- SOOOOO glad they were nice boys and brought her right inside her home. After that, she was moved to the memory care wing which was locked down. When Mother would come out to visit, we would go see Aunt Edith, and Mother would get so angry when Edie forgot things or got things wrong. I said "It doesn't help her to disagree with her, and it doesn't really matter what she remembers, just smile at her and pat her hand!" Now Mother is in the same position -- "A dog that will fetch a bone..." Anyway, eventually Aunt Edith stopped talking, and we felt that we had lost her even more. When I was able to go visit, I would just sit and hold her hand and pat it. She would make some silly noises and I would just respond as if she had said something intelligible. We would laugh and laugh and it was wonderful to see her snaggle toothed old smile -- her blue eyes still snapped and sparkled. I would sit and sing to her all the old church hymns from long ago and she would smile and rock back and forth and try to clap with the faster ones.

I don't know how long my mother will be able to interact with people and remember them. I know it worries Daddy that he will most likely be leaving her behind. Hopefully she will only remember the good things and not sit and grieve forever. She has always preached a big religion, but has never exhibited it. She has always been scared to death of life and people and everything else -- more superstition than faith. Daddy, on the other hand, is quite certain that he will be going to see his parents and his siblings soon. He has faith that God is preparing a place for him and that everything over there will be wonderful and golden, so even though he knows that we will be sad when he's gone, he is ready to go home to Jesus when it is time.

Life, which can bring such inexpressible joy, can be filled with the most unimaginable pain. Perhaps faith in the Almighty is the only way we can make sense of it in the end.

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
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Ninibini
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Nini
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Posted - Jul 06 2016 :  09:09:53 AM  Show Profile
So true, Marilyn... So true...

I came across this the other day... Just thought I'd share:

CAREGIVER'S 10 COMMANDMENTS

Always - Always - Always:

Agree - Never Argue

Redirect - Never Reason

Distract - Never Shame

Reassure - Never Lecture

Reminisce - Never Say "Remember"

Repeat - Never Say, "I Already Told You"

Say "Do What You Can" - Never Say "You Can't"

Ask - Never Command

Encourage and Praise - Never Condescend

Reinforce - Never Force


Is anyone's loved one encountering sleep problems? They have given my husband different medications, and one worked for a while recently, but he is having a terrible time sleeping at night again. Like living his life isn't hard enough, now he has to do it while completely exhausted. And he gets more tense, more stressed and more angry so much easier. This morning he woke up, feet pounding the floor, stomping all over the place and yelling at me - I hadn't even risen from bed yet! How can you make another person angry before you even get up from bed!? I know he is frustrated, and I know that his cruelty is not him, it's the illness, but what a heck of a way to start the day! It's been a long day to be sure, and it's only just past noon. I would really appreciate any insight you might have as to how to help him. We're sticking to bedtimes, a soothing shower at bedtime, no light, peace and quiet, and we've even tried herbal teas. Right now nothing is working. He used to keep me up at night, but lately I'm so exhausted, I always manage to get a few hours. Although he lets me sleep, he seems to resent that I do sleep. Help!

Thanks for being there, girls. Be kind to yourselves!

Hugs -

Nini

Farmgirl Sister #1974

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


Edited by - Ninibini on Jul 06 2016 09:11:15 AM
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Marilyn Hartman Sullivan
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Marilyn
Oxford PA
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Posted - Jul 06 2016 :  10:20:36 AM  Show Profile
Nini -- My friend whose wife is ill stopped by the office earlier to catch up on some Rotary business. He said that he managed to get Mary to bed last night and that it was the first time in over 2 weeks that he had been able to do so. He said he used to try to stay up and watch her, but he was exhausted and had to get some sleep. She would go from door to door to door in their house, go put on her coat, tie the hood under her chin, and go out and sit in the car in the driveway. He had a guy come in and change all their locks to deadbolts with keys and now he has given up and just lets her wander around at night so he can at least get some sleep. He didn't mention her being so angry with him, though. But then she doesn't speak any longer.

I don't know anything to say that would help -- hopefully the doctors will be able to help your husband get some sleep. Please make sure you keep yourself safe. I know it is awful to even have to think about such a thing, but we want you to be safe.

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
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Ninibini
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Posted - Jul 10 2016 :  7:46:57 PM  Show Profile
Oh my goodness, Marilyn! That must be horrendous for that man trying to sleep! And his poor wife... I feel so bad for her and my husband and everyone else who goes through this. Like I said, as if it's not tough enough being sick, but trying to deal with it through pure exhaustion! Torturous! We have an appointment with his psychiatrist this week, but I don't know what he will do to help him sleep. We still haven't heard from the doctor with the test results yet - hopefully tomorrow (I figured things would probably be delayed due to the holiday last week). The results will help direct what medications/dosages they try, I suppose. I just hate all the medications - all the trials and errors, all the emotional and physical ups and downs. To me, those are just as torturous as the illness and lack of sleep!

My husband had genetic testing done a while back, though, which really helped identify which medications would or would not work well for him. A lot of doctors don't lay a lot of weight in the results, though, since the testing is a relatively new development. They cite that although the testing is helpful, there is just not enough evidence to back up the results. I'll tell you what, though, we have found the results to be dead on 100% of the time. Have any of you had any experience with the genetic testing?

I'm okay, Marilyn, honest. Thank you, though! It really IS an awful thing to have to think about, but it's a reality - safety first, always!

Hugs and love - and remember to be kind to yourselves!

Nini





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

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Beverley
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Beverley
atlanta Michigan
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Posted - Jul 10 2016 :  8:01:16 PM  Show Profile
Thank you all for your comments. I take them to heart and I know some people get it!! Thank you again.

Folks will know how large your soul is by the way you treat a dog....Charles F. Doran
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prariehawk
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Cindy

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Posted - Jul 10 2016 :  8:24:58 PM  Show Profile
Nini--thank you for starting this thread. My heart aches for you and what you're going through. My dad has dementia/Alzheimer's and it was just about a month ago that the dr. put him on a medication so he wouldn't feel agitated all the time. I KNOW how it feels to be agitated, and no one wants to feel that way. No one wants to feel angry, suspicious, and hateful towards a loved one. No one wants to feel like their mind is working against them, but it's a sad reality. All we can do is try to understand what they're going through and offer support.
Cindy

"Come by the hills to the land where fancy is free; And stand where the peaks meet the sky and the rocks reach the sea.Where the rivers run clear and the bracken is gold in the sun. and cares of tomorrow must wait till this day is done"--Loreena McKennit
"In many ways, you don't just live in the country, it lives inside you"--Ellen Eilers

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Ninibini
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Nini
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Posted - Jul 11 2016 :  1:12:58 PM  Show Profile
Thank you, Cindy. I am so sorry you're going through this, too. You described what we see in my husband to a "T" - the anger, the suspicion, the paranoia, the hatefulness. He is really much better now, though, that he is on the right medications. Although, I struggle with seeing him in this foggy medicated state. His aunt who is a retired nurse has told me several times not to feel bad that the medication does this to him. She said the goal is to make him calm and comfortable. The other meds made him a raging crazy person. These make him calmer and more content. Which do I prefer, she would ask. She said just to be grateful for the peace that I see in him. I am. I guess I am just struggling with wanting my husband back, the way he used to be. Reality is, he can't be that person; his mind won't let him. It's a tough thing, it really is. But I am truly, truly grateful for the peace and that he isn't suffering like before. And I'm truly grateful he is here. We just need to focus on the positive, right? He says the one thing he holds onto is the knowledge that he is just the same today as he was yesterday. He doesn't really notice the changes like we do. If that gives him peace, though, I'm sure not going to take it away from him! :)

Does your Dad realize what is happening to him? I guess that's really a question for everyone with a loved one going through this... I think it's kind of merciful that my husband doesn't see the changes in himself. I don't want him to be frightened or worry. Sometimes he admits to us or to other people that he knows he can't do what he used to do. He gets frustrated because he can't explain what this feels like, or what it's like in his head. He just kind of accepts it as normal, even though it isn't, do you know what I mean?

What types of things do you do with your loved one to keep him or her active? Do you do any puzzles or games or memory activities to help them stay as sharp as
Do you have familiar sayings that you repeat often to help them remember you? Do you notice that music helps with memory or keeping calm? Do you supplement his or her diet with any special vitamins or coconut oil or anything like that? Do you notice any difference by doing so? How do you encourage socialization with other family members and friends? What things do you find are working to improve the situation for your loved one? What kinds of things do you recommend?

Thanks for sharing everything, girls. I know how hard this is, and my heart aches for all of you as well. Thank goodness, we're in this together. We'd never wish this on anyone, but it sure is good to know we're not alone.

Remember to be kind to yourself!

Hugs and love -

Nini

Farmgirl Sister #1974

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

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Ninibini
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Posted - Jul 12 2016 :  10:20:34 AM  Show Profile
Girls - Just want to give you the heads up... There is a story on "The Doctors" today about Alzheimer's. If you can't get to watch it when it comes on locally, perhaps you will be able to view it on YouTube. Just the intro has me in tears. Love and hugs - Nini

Farmgirl Sister #1974

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

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Ninibini
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Posted - Jul 12 2016 :  5:51:59 PM  Show Profile
Hey girls - Just a little update on the story on the doctors. This gentleman's mother had been diagnosed with Alzheimers for several years, and had started to become very angry and violent. He discovered that playing his guitar and singing familiar songs he wrote would calm her immensely and almost immediately. They said it was like night and day. One minute she'd be attacking him, the next she'd be smiling and loving on him. The specialist there said that music has an amazing effect on Alzheimer patients because it forms a connection with unaffected parts of the brain, sometimes even in parts of the brain where Alzheimer's cannot reach. It was amazing to see how much it helped her. The gentleman said his mother had always been his biggest fan, always falling in love with his songs and melodys, so one day he just decided to pick up the guitar and start singing to her. He was amazed to see how the familiar songs soothed her. They seemed to think that it isn't just familiar music, but music itself that makes a connection between the patient and loved ones or caregivers. The whole thing was extremely moving. Do any of you share this same experience?

Be kind to yourselves, now!

Hugs -

Nini

Farmgirl Sister #1974

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

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Marilyn Hartman Sullivan
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Marilyn
Oxford PA
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Posted - Jul 13 2016 :  11:32:25 AM  Show Profile
Our family has always been all about music. Mother and Daddy used to sing on the radio when they were younger. I wonder if having some of their old gospel recordings playing in their room would help keep her happy and less angry! It's worth a try, for sure. Thanks for sharing.

I do know that when my Aunt Edie was so seriously far along with Alzheimer, my cousins would come to visit and sing old songs for her and she would make eye contact and try to sing along.

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
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Marilyn Hartman Sullivan
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Marilyn
Oxford PA
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Posted - Jul 19 2016 :  08:29:37 AM  Show Profile
Had a rather odd text from my dad a few days ago -- it was just a bunch of random letters strung together. I called to see what was up, but my call went to voicemail. My brother had called earlier that day, and said that Daddy seemed to understand what he was saying, but was unable to get his words together to answer coherently, and was speaking gibberish. My other brother called my mother, who said "Oh, your dad is just tired." This is part of the problem with someone with dementia (my mother) trying to take care of someone with a terminal illness (my father). She ignores real symptoms and then when it gets worse, she panics and calls one of us kids -- most of whom live at least a thousand miles away!!!!

I have contacted their Hospice social worker to see if there's something that can be done to "encourage" Mother and Daddy to call Hospice FIRST if he gets sick again. They are in an assisted living facility, but they sit in their room with the door closed most of the time. The staff seems very attentive, but they also try to respect their residents' privacy as much as possible. Mother doesn't want anyone else getting anywhere NEAR Daddy, especially women, so she will let him sit and get sicker and sicker until he's in really bad shape instead of calling a nurse for help. Then she calls one of us kids and cries and shrieks. My oldest brother is the only one who lives nearby, and they have about run him ragged -- he is having ulcers again and chest pain. Daddy is very weak and very tired and he would just lie there and die if left to his own devices, I think. Mother is physically healthy, but has no idea what is going on most of the time and has no short-term memory at all.

At this point I don't know which is worse -- Daddy's failing body, or Mother's failing mind.

Farmgirl #6318
"Where there's a will -- there's probably a family fight."
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Ninibini
True Blue Farmgirl

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Nini
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Posted - Jul 20 2016 :  9:02:31 PM  Show Profile
Oh, Marilyn... How terribly sad and difficult this must be for you. I wish I could give you a big, warm hug. I cannot even imagine... Please know I will be praying. Will you please explain about the assisted living situation in which your parents reside? I'm not very familiar with how assisted living works, I'm sorry! I guess I'm having a tough time understanding how the nurses' desire to respect your parents' privacy can override or interfere with their responsibility to care for them, regardless of how your mother feels about it. In other words, if the facility knows your dad is seriously ill, shouldn't they still be checking in on him on a regular basis, despite your mother's protests? Such a difficult situation. I will be praying about it, I will. God love and bless you!

Today my husband and I went out to run an errand and decided to stop for lunch at a restaurant we've frequented in the past. He really shocked me. He had such a hard time making sense of the menu (which should be familiar to him), even when I reviewed the choices with him. He was clearly overwhelmed. The waitress had to come back three times before he was able to order. We've never had this happen before. Have any of you dealt with this kind of thing? How do you handle such social situations with your love one? Thankfully, the waitress could tell he wasn't right, and she was very kind and patient. When he finally ordered, she had to review it with him a few times before he AND she got it straight. I tried to help, but it seemed I was just adding to the confusion. Afterwards, he was like a confused, unsettled, lost little boy (he has been like that all evening). It was so hard seeing him like this. I honestly didn't expect it. Later on, after we were home, I asked him if he had trouble understanding or reading the words on the menu. He insisted he did not. He said he just didn't know what he wanted to order. I could tell he was just covering himself and trying to save face, although I feel I am the last person with whom he should ever feel he has to do that. I know what I saw at the restaurant: He was totally lost when looking at the menu, and seemed very confused not only by the words but by the pictures of the different foods. He had such a funny look on his face and in his eyes. It broke my heart. Sometimes he seems to be okay, but when I speak to him or try to engage him in an activity, he suddenly becomes extremely overwhelmed. It's like it happens completely out of the blue. Today was definitely one of those days. I just wish there was some sign, some way to recognize he is becoming overwhelmed. He has such an expressionless face and eyes most of the time... It's difficult tell what he is thinking and experiencing because he doesn't really communicate how he's feeling, and most of the time I can't tell by looking at his face or into his eyes. I can't imagine what this must be like for him, God bless him. Sometimes I feel like such a failure with this. I just need to figure out how to read him before it's too late and he is frustrated. I need to get better at this, I really do.

Be kind to yourselves, girls...

Hugs -

Nini



Farmgirl Sister #1974

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


Edited by - Ninibini on Jul 20 2016 9:11:56 PM
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