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Across the Fence:  Family Illness... Catching Up!  |
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Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
 Posted - Jun 22 2016 : 10:09:14 AM
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Hi Girls!
Oh, how much I’ve missed you! Just thought I’d take a moment and drop by to say “Hey!!!” and let you know what’s been going on in my life, and try and catch up on everything that’s happening in yours!
Well, without going into all the details, my husband has recently been diagnosed with frontotemporal lobe degeneration/dementia. He’s only 53 years old, and this has come as a terrible blow to all of us. Over the past year, we’ve seen and/or contacted so many doctors and gone through so many medications trying to help him, it’s just one big blur. He had been misdiagnosed at the beginning, which caused us nothing but nightmarish grief. As of just a couple months ago, however, we were SO extremely blessed to have been seen by a specialist, who is, in my opinion, truly the best out there. Our appointment with him was the first time that I felt someone really listened, understood, and has the ability – and willingness – to help us. They now have him on a medication that helps him tremendously. Although it does not address all of his issues, it sure has helped to calm him tremendously. Since seeing the specialist, my husband truly believed he would get better. In his mind, the medication made him feel better than he had in ages, so this HAD to be a cure. But he is having a terrible time really processing and understanding things, and was probably in a bit of denial as well. Our appointment this week with the cognitive specialist was rather a devastating blow to him. Tomorrow he has a new round of testing to update their findings since last summer. This will give them a much better idea of how the disease has progressed, as well as give them more insight as to what is actually happening in his brain. And, thankfully, my husband will soon be seeing a neurologist who specializes in this disease who will be able to help us through.
The impact of all of this is finally hitting all of us. Last night we all cried - sometimes together, sometimes by ourselves… It’s just quite a lot to swallow. And it is so heartbreaking to see my husband in tears. He is my superhero, the guy who can do anything; but now he is changing, and some days I see the little child in him more than my bigger than life hero. Since last summer the laughter is all but gone, the light in his eyes flicker, and the worst part is that his passion for life and the joy in his soul have waned beyond imagination. Some days, I really don’t know him anymore, and then suddenly I see him… He’ll say or do something to make me laugh, or he’ll suddenly start talking about something with such clarity, and my heart wells up with joy: That’s my guy! He’s still in there! I sure would like to have more of those moments, believe me. It’s just so hard, especially on our son whose young life as an adult is just beginning. His dad has always been everything to him: best friend, advisor, leader, hero. Dad told him he wants him to live his life to the fullest, to not let what is happening get in his way. That’s a hard thing to do, but I’ll be here to help him when times get tough. He can do this… for himself AND for Dad.
This disease is very similar to other diseases of dementia, like Alzheimer’s, however it is a rather quickly progressing disease, extremely aggressive. It is unclear as to just how long my husband will continue to have his faculties, time will tell. And where Alzheimer’s can drag on for a seeming hellish eternity, the life expectancy with this disease is, almost mercifully, quite short. There just hasn’t been enough time. I am praying for miracles, and yet praying for God’s guidance and blessings of wisdom, strength, and that He equips me with whatever I need in order to help him. Am I scared? Yes and no. In the wee hours, I’m terrified. And I do cry - a lot - when I’m alone (something I just don’t like to do). HOWEVER, having said that, as Shannon would say, I know none of this comes as any surprise to God, that we are right where He has led us to be, that He loves us more than we could ever imagine, that He has a plan, and that He has everything under control. What more could I ask for, really? God will make a way… We will be okay.
People go through so much worse… Everyone suffers in this life, one way or another. This is just OUR story. I told my husband that we can either go out making the best of every moment, living with joy and gusto, finding the best in every moment, or we can be miserable and live in fear and heartache. “I’m for blazing a rainbow on our way out,” I said to him, “How about you?” He just gently smiled for a moment, said, “Yeah.” and then was in his own world for a long while. I think right now Grandma would say, “Think happy thoughts.” That’s what I have to do, or I will crumble. Thank GOD for Grandma’s loving wisdom!
If any of YOU have any experience with this or wisdom to share, I sure would appreciate your help! Maybe we could just start a special thread to help each other deal with life-altering health issues like this when they strike… I know I cannot be the only one going through something like this. Would anyone be up for an ongoing conversation of information, insight and good old farmgirl support?
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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Edited by - Ninibini on Jun 22 2016 10:16:48 AM |
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Red Tractor Girl
True Blue Farmgirl
6663 Posts
Winnie
Gainesville
Fl
USA
6663 Posts |
Posted - Jun 22 2016 : 10:17:33 AM
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Nini, it is good to hear from you again and I am so sorry to hear about your husband's diagnosis. I will be keeping you and your family in my thoughts and prayers.
Winnie #3109
Red Tractor Girl
Farm Sister of the Year 2014-2015 |
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YellowRose
True Blue Farmgirl
7110 Posts
Sara
Paris
TX
USA
7110 Posts |
Posted - Jun 22 2016 : 10:31:27 AM
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Nini, I am so sorry. Praying the Lord's grace that passes all understanding will cover and keep you and your family. Praying your DH will know peace and be kept from fear.
Sara~~~ FarmGirl Sister #6034 8/25/14
FarmGirl of the Month Sept 2015.
Lord put your arm around my shoulders and your hand over my mouth. |
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Marilyn Hartman Sullivan
True Blue Farmgirl
1138 Posts
Marilyn
Oxford
PA
USA
1138 Posts |
Posted - Jun 22 2016 : 11:18:36 AM
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Nini -- Oddly enough, I have a good friend here whose darling wife was diagnosed with this terrible illness just shortly after I met them, about 4 years ago. The family had noticed some strange deficits for some time, but as she was very young (just a year or two older than your husband) the symptoms had been ignored or glossed over as "that time of life." When they finally got a good neurologist who took some time, they were able to get a solid diagnosis and get started on the appropriate therapies.
Mary had been a very high-functioning person who was her husband's right hand. He had been in a car accident years ago, and she had overseen his therapy and helped him to recover almost all of his physical capabilities. They were a solid team in every sense of the word and there was nobody prouder of her accomplishments than he was. She proofread his documents, checked his math, coordinated his wardrobe, raised the kids and took care of their home. She was his light, really.
When I first met this couple, she was a warm and generous person with a lovely smile and winning personality. She had a quiet voice and I noticed that she spoke very little, but I assumed she was just a little bit reserved. I came to find over time that speech was one of the first things the disease took from her. For a while, she would repeat phrases over and over, then she began just saying "dit dit dit dit dit," when she spoke. She thought that she was saying "Hi! How are you doing? Isn't this weather lovely?" but all we could hear was "dit dit dit dit." Her husband would say he couldn't understand, so she would write down what she was trying to say, and it was perfectly legible, perfectly spelled, perfectly....perfect. But she could not speak her thoughts. Eventually, she stopped trying to speak, but still had the warm smile, and would hug her greetings and pat hands. That, sadly, is now gone as well. Up until maybe a year ago, she could still pick up the Sudoku puzzle from the newspaper and finish it in ink in record time -- but she didn't know where to go when it was time for bed, and didn't know that the stove would burn her if she put her hand on it.
Her husband has continued his work as the director of our local Senior Center -- taking Mary to work with him daily until the past year or so. At first, he was able to make a few little jobs for her -- he said it took her twice as long as doing it himself, but it kept her engaged and close by where he could watch her.
As the disease has progressed, she has become more and more anxious and has to have her meds adjusted frequently. She sleeps quite a bit, which gives him a chance to get his household work done before she wakes up in the morning. He takes her to an adult daycare as many days a week as they are open, and his adult children have been there to help out and have her with them when he has other commitments. He has promised to keep her at home as long as is possible, and we are all impressed that he has been able to manage as long as he has. He is exhausted, has dark circles under his eyes, is worried beyond belief and very very sad, but he perseveres.
We sat talking over a cup of coffee after a chance meeting uptown one morning recently, and I asked how she was doing. Through tears, he told me that day's symptoms and said that there are no good days for her anymore. It is always just a matter of managing to make her feel less anxious so that she remains calm. He tries not to think about what goes through her mind, or if she knows what her situation is or not, because he just can't imagine how it would feel to her if she knew. The doctors have told them that the usual life expectancy with this disease is 5 years from diagnosis to death, and Mary is at 6 years and counting. He knows he will have a life after she is gone and he prefers not to think about it for now. He says he signed up for "In sickness and in health, 'til death do us part," and he means it today as much as he meant it 30 years ago. I cried with him and hugged him, paid for his coffee and told him to "hang in there." Then I felt like a jerk for saying something so trite and stupid.
So Nini -- You have my support. You have my good cheer. And you have my tears for when you are all out and still need to cry. Know that your friends and family love you and your husband very much, but that most of the time we just don't know what to say and sometimes will say the wrong thing without intending to.
To everyone else -- love each other, lift each other up, enjoy every day with your sweetheart, make memories now...and "hang in there."
Farmgirl #6318
"Where there's a will -- there's probably a family fight." |
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Blessed in Colorado
True Blue Farmgirl
6718 Posts
Debbie L.
Oregon
USA
6718 Posts |
Posted - Jun 22 2016 : 1:47:33 PM
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Nini, thank you for checking in with us we do worry you know. Keeping your hubby, you and your family in my heart and thoughts. We are always here for each other.
Hugs,
Deb
#1582
Blessed in Colorado
FGOTM, Septembe, 2012
"You must do the thing you think you can not do." Eleanor Roosevelt
Women are Angels, and when someone breaks our wings We simply continue to fly on our Broomsticks. We're flexible like that!
http://shopus.longaberger.com/mountainwingslongabergerbaskets
http://myworld.ebay.com/debbt |
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violetrose
True Blue Farmgirl
960 Posts
Ruth
Epworth
GA
USA
960 Posts |
Posted - Jun 22 2016 : 7:03:36 PM
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Hi sweet gal. I am so sorry you all are going through this hard time in your lives. Know you are loved and prayed over. That we are here for you whenever you need an ear, or shoulder to cry on. Only wish I could be with you in person to really give hugs, and hold you while you cry. God will bring you through this. He is holding you close and will not let you go.
Much love and many prayers
Ruthie
Farmgirl Sister # 1738
God loves each one of us as if there were only one of us!
St. Augustine |
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ceejay48
Farmgirl Legend/Schoolmarm/Sharpshooter
13664 Posts
CeeJay (CJ)
Dolores
Colorado
USA
13664 Posts |
Posted - Jun 22 2016 : 7:52:44 PM
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My dear Nini,
How my heart hurts for you! Thank you for telling your story, even though I'm sure it was difficult.
Yes, God leads us where He wants us and we have to remember that we can always TRUST Him and His heart, even when we can't see His hand!
I have been and will continue to pray for you and your family!
HUGS, LOVE and PRAYERS!
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 Jun 23 2016 09:37:25 AM |
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craftingram
True Blue Farmgirl
526 Posts
Karin
Nashville
In
USA
526 Posts |
Posted - Jun 23 2016 : 07:01:12 AM
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Sweet Nini, I am so sorry that your and your precious husband are going through this. Keeping you both in prayer.
Karin
Farmgirl Sister #2708
Romans 8: 38,39 |
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LadyInRed
True Blue Farmgirl
6740 Posts
PeggyAnn
Vancouver
WA
USA
6740 Posts |
Posted - Jun 23 2016 : 09:44:05 AM
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Oh Sweet Nini...I am so sorry and yet God is so with you! This has not taken Him by surprise or
knocked Him for a loop. And remember that when we are weak He is stronger still.
My husband was just diagnosed with this too. He goes to a neurologist at the end of the month.
Are you noticing anger out bursts? Frustration in communicating just normal conversation with you?
Really off the wall comments? After 32 years of marriage my husband told me in an email two weeks
ago that he wanted a separation or divorce. That came out of no where...other than he was mad about
something I said, didn't say, did or didn't do??? The next morning all was well again, for the moment.
I daily walk on egg shells as I am sure you know how that goes.
PLEASE, LETS START OUR OWN THREAD FOR PEOPLE WHO ARE DEALING WITH THIS.
I Love you dearly and I could use the support myself. It is hard to talk about. I do have a good
friend whose husband is going through this too. We rant, rave, pray, and cry together and not in
that order.
Love, Big Hugs, Prayers Continually,
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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lovinRchickens
True Blue Farmgirl
3492 Posts
Kelly
Pipe Creek
Texas
USA
3492 Posts |
Posted - Jun 23 2016 : 11:39:26 AM
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Nini and Peggy, I am praying for both of your DH's.
Farmgirl #5111
Farmgirl of the month October 2014
Blessings
~Kelly~ |
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Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Jun 23 2016 : 11:41:56 AM
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Oh my gosh, girls... Thank you so much for your loving support and prayers. I feel so much better now that I'm back "home" with all of you! God bless MJF Farmgirls!!!
Marilyn & Peggy... Oh my gosh... Where to begin?
Marilyn, I welled up in tears as I read your story about your friends. I just wanted to wrap my arms around all three of you and cry together. This is a horrible disease. My husband has changed so much in such a short time. I am really upset about what is going to come, too. Please tell your friend that I will be keeping him in my constant prayers. He is amazing, and I hope to do the same for my husband, too. And what you said about friends and family not knowing what to say... Oh my gosh, that's the hardest part some days. I am the person who is ALWAYS there for everyone, but now that this has attacked our family, it's as if people have just scattered. Everyone wants an update, so I update, and then nobody responds. Not even an "I'm praying for you." I feel so indescribably alone in all of this. But I do know you're absolutely right - what can people say, really? There's nothing that is going to change what is happening. And please do not ever feel like a jerk for saying "hang in there." There have been days when I'd give my eye teeth for those three short words. The most important thing is, I think, that you are there and supportive whenever you can be. The world this man's wife is locked up in is horrifying to me. Having someone who will sit and share a cup of coffee must've been extreme comfort. The isolation is a killer, honestly. Over these past few months, some of our farmgirl sisters - even MaryJane! - God love them all! - have sent an occasional card or email letting me know they are thinking of me and still praying. In the dark times we've had - which are nothing like what your friends are experiencing (yet), those loving messages were all I had to hang on to, and I've read them over and over, reminding myself that I am not alone, and people are praying for us... It's a wonderful feeling, believe me. I've been thinking a lot lately about the people in my life who have experienced such horrific illness in their lives. I must admit that there were times that I wanted to call or stop by, but I never knew if it was okay - was I going to be more of an imposition and interruption? Were they too ill? Now I am understanding the joy on the other end of the line when I would call my friend Karen while she struggled with cancer. And when I stopped by, even when she was so ill that you'd think she would rather just sleep, her face would light up and she would just perk up and become all chatty and happy, even if just for fifteen minutes. And then the other night, when my husband was crying (break my heart), I asked him what he wanted me to do for him. He said, "Just be with me." "Of course," I said. I think his response says it all. When my grandfather was in the nursing home riddled with Parkinson's, I would stop by after work and sit with him while he ate dinner, then we'd catch some favorite re-runs on t.v. I cannot tell you how many times I'd go to kiss him good-bye, and he'd just gently reach out and hold my arm, as if to say, "Just a little while longer." And, of course, I did. Love doesn't need to speak, love only needs time together. So, believe me, whatever time you give, even if just a cup of coffee to the husband, or a few minutes sitting with his wife, you've done them a world of good, and HELPED him, "Hang in there." You are an angel. If you lived closer, I'd be taking you out for tea and flowers! :)
And Peggy... Oh my gosh. I am so, so sorry. I know exactly where you are, and I will pray for you whole-heartedly and always be here for you, too. You're right, God is with us. We're in the Best Hands, even though we're in what feels like the worst situation.
My husband dropped a horrific bombshell on me a couple of years back, and my world just kept spinning and spinning. My first reaction wasn't anger or hurt, it was mercy and to recognize there was something terribly wrong. This just wasn't my husband. I know your pain, and I am so, so sorry you are suffering like this. And yes, most days, my husband doesn't understand the magnitude of what he has said and done over these past months. It's like he is oblivious. And yet, to me, it's like pieces of me are being picked away day by day. I keep telling myself it's not him, it's his brain. But, God help me and forgive him, he pierces my heart sometimes. In his clearest moments, he tells me how much he loves me and that I am everything to him, and how amazing I am and how grateful he is to me for sticking by him. I believe that, I really do, because THAT is him.
Shortly after this "revelation," the non-stop screaming rage began. I honestly think that the stress is what contributed to my heart condition and the need of a pacemaker. The stress sometimes is almost unbearable. He has also had mind-blowing headaches this entire time, which could not be controlled with medication. Several months of botox shots finally has given him some relief, but there are days when they come back with a vengeance. I feel so bad for him. All I hear in my heart when he is going through all of this is "mercy."
We had (and still have) counseling, he saw (and still sees) a psychiatrist, he had all sorts of testing done - MRIs, CT Scans, cognitive testing, etc. Nobody really understood the depth of what I was trying to tell them was happening. We walked on eggshells, and it felt as if they just scoffed at me. I felt like saying, "Then YOU take him home and let him live with YOUR family for a few weeks and THEN tell me what you think!" We went through countless medications that set him off even more, and made him even more unreasonable, unrealistic, etc. There were always new side effects, that now, in retrospect, I believe were the beginnings of his downfall. He was just seeing the wrong doctors. He was seeing all mental health professionals; what he needed was to be with neurological specialists. How could I have known, though? Nevertheless, it has been a total nightmare. My husband was so afraid of being committed that he played the game pretty well for a long time. People never saw the ugly side of this, and he lied a lot to doctors, family and friends. He would let everything fall apart at home and save his best energy and effort for times when he'd have to be around other people. Total nightmare. But finally it all came to a head and he couldn't pull it off anymore. People started to see what was truly happening to him, how altered he really was, and they were shocked. Even our counselor who had been seeing him for three years only saw that scary side of him a month ago. He said, "I am so sorry... If what I saw in my last visit with your husband is what you have been dealing with all this time, WOW. I had never seen even an inkling of that before. This must be a total nightmare for you and your son." "For my husband, too," I said.
In the past couple of months, especially, my husband has really been falling apart. He is forgetting words and sometimes when he is speaking he ends mid-sentence as if I am reading his mind or as if he thinks he is still speaking when he isn't. He has lost all interest in things that he used to really enjoy. He has a terrible time concentrating, and when he can't "get" it or find the right words, he throws a temper tantrum. He confided in the cognitive specialist the other day that he is also having trouble understanding what is being said to him. He said that he understands each individual word, but he can't put them together an make sense of them, so he gets really confused and upset, usually lashing out and projecting it all on us. That was a real "aha" moment for me, because sometimes I thought he was just being difficult or he just didn't want to do what was asked of him. He also shared that he is having great difficulty figuring out spatial relationships, like how far the doorway is when he is trying to walk through it. He has banged his head getting into the car more times than I can remember, and he always seems to lose his balance most when he is walking through the doorway. He does make off the wall comments! And he has "heard" us saying things that never came out of our mouths, and then yells at us, having taken offense! He also perceives everything as a slight or an attack against him. It's unreal. Talk about walking on eggshells!
On the road, he will get upset about something like another driver talking on the phone, or about something I've said that had no bearing on him, and he will throw his keys at the windshield while I'm driving, or stomp his feet so hard, you'd think he was going to put a hole in the floor! He got so angry at one of the most ridiculous perceived slights one time that he jumped out of the van while I was driving! They haven't taken his keys away from him yet, but it's surely coming. We do almost all of the driving now, anyway. But the day they take his keys is going to be tough. I can't even think about it.
He wanders away from the house, no keys, no phone, never even saying he was leaving... he just disappears. That sure freaks our son and I out, believe me! He has even "run away" from home when he gets upset, and gotten in the car with a complete stranger! He is always okay, but in my mind I keep thinking, "He is KILLING me!" SO many things... The list goes on and on. He even wound up in a mental health unit for several days. And his personal care habits have been atrocious at times, but he doesn't care - he thinks I'm being ridiculous! His eating habits have changed, his sleeping habits have changed. Most of the time he is stone-faced and non-reactionary, like he could care less, or really doesn't understand the depth of what is going on around him. He has done things that absolutely blow our minds. SO much is happening. This is just not my husband. All the while, the doctors were telling us that he had bi-polar mixed mania. I could see what they were saying, but honestly, they were only focusing on the rage (which was, for a long time, the worst of it). After weeks of phone calls to different doctors and facilities, etc., I had run into so many dead ends in getting him help, I was a basketcase over it myself. Nobody would help; seemingly nobody cared. Even our health insurance mental health concierge became frustrated and disillusioned with the system when trying to help us make the necessary connections. I don't know what it's like where you are, but here the system is extremely broken. Seemed not only his psychiatrist, but all the other places I called said so, and no one could offer any help or answers. I even called Mayo Clinic and Johns Hopkins... At first they seemed to be willing to help, but they ended up being dead ends as well. It was frustrating - and heartbreaking - beyond belief. I would take him to the ends of the world to get him the help, if only someone would provide it. Such a nightmare.
Thankfully our loving Father God led a dear friend to make an amazing connection for us with this specialist who took my husband on as a favor. When we sat down and started talking with him, I felt like a weight was starting to lift. Our conversation with the cognitive specialist on Monday proved the same, even though the diagnosis is devastating. It's just such a blessing to finally have people listening who really understand and can help. He will have a new neurologist soon, too. I have high hopes that he will at least be under the proper care.
Since speaking with the cognitive specialist, as I said, it has all been really sinking in to my husband, who I think up until this time honestly thought he was fine and everything was wrong with the world. It's been such a hard few days. He just had his cognitive testing today, and he is whooped. He said he had some real problems with some of what he was asked to do. He's scared. I guess I have to admit I really am, too. I can't imagine what life is going to be like as this insidious disease takes over. I can't imagine what he will go through. I can't imagine how I am going to hold it all together. I can't imagine life without him.
I can't imagine life without him...
I haven't said those words before, let alone typed them. What am I going to do without him? Oh my gosh. This is so real, Peggy...
Let's stick together. You and me and God. We'll get through this. We will. I'm here for you, always. I don't have a lot of "me" time to talk privately, but I'm going to email you my number. You can call me ANYTIME. We're in this together, sister. I love you.
For the rest of you out there who are thinking, geez, this is a lot of personal stuff Nini's sharing... Believe me I have reservations about exposing our lives like this. You'll never know. But the one thing I do know is how isolated I feel. Peggy, Marilyn's friend and I cannot be the only ones going through this. If something we share can help just one person feel like they're not alone, then it's all worth it. We really need to help each other through.
I have to go... Yet another appointment. Thank you so much for opening up, girls, and for everyone's support. I'm going to be okay, honest.
Love you all dearly. BIG hugs,
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
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Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Jun 23 2016 : 11:42:38 AM
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Thank you so much, Kelly! Warm hugs to you! You'll never know just how much that means to me! - Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
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lovinRchickens
True Blue Farmgirl
3492 Posts
Kelly
Pipe Creek
Texas
USA
3492 Posts |
Posted - Jun 24 2016 : 4:25:24 PM
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Oh Nini,
I have tears in my eyes reading all you wrote. I can not speak from experience, but an overwhelming sad comes over just trying to imagine, my heart is breaking for you. Yet I know God is in 100% control and He will see you through this. Please take enough "you" time to reflect and lean on Him. He will give you the strength. Us farmgirls will shower your family with prayers!
Farmgirl #5111
Farmgirl of the month October 2014
Blessings
~Kelly~ |
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HealingTouch
True Blue Farmgirl
3448 Posts
Darlene
Kunkletown
Pa
USA
3448 Posts |
Posted - Jun 24 2016 : 6:46:54 PM
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Nini,
Words can not say what is in my heart for you. At least you have the correct diagnosis and can move forward. The diagnosis is certainly a difficult one to hear. My sister is going through a dementia diagnosis with her husband and can't even say the word. She says the same thing you said,"I'm losing my husband." Before I retired I spent the last 12 years caring for and loving my elderly patients. Dementia was what I loved the most. It seemed that I could calm them when they were lost in there world. I was hit, slapped, punched, spit at cursed at and you get the picture. It is at that time they are frightened the most. I have learned many ways to help them cope. I will be here if you need me. If you want my phone number email me.
Peggy,
I didn't know about your husband's diagnosis. If you want my phone number email me. It saddens me because I know the looks, the rage, etc.
Both of you know that God is by your side. Let the rest of us lift you up. Many prayers for all of you. One day at a time dear sisters.
Be Blessed and Be a Blessing,
Darlene
Sister 1922
God first, everything else after!
When Satan's knocking at your door, just say "Jesus will you get that for me?"
When it gets to hard to stand, Kneel!
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Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Jun 25 2016 : 07:02:59 AM
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Oh, Kelly - a big hug out to you, too. Thank you. Just... Thank you.
Darlene - Thank you. You are so right, at least now we have a diagnosis and are moving in the right direction. That is such a blessing indeed. Knowing that he will now be under the care of doctors who will understand and really care for him is SUCH a relief. And I am sure they will be able to advise me as time goes on as well. It really is SO hard being the only one going through this. Knowing that you're there, and that Peggy and Marilyn are there, really helps. I will definitely email you. Thank you so, so much. My husband isn't violent when he is awake - he hasn't hit us or anything. He never has. Having said that, however, he does get pretty violent in his sleep sometimes. The cognitive specialist said that is of concern as well, that once a body shuts down for sleep, it shouldn't be so physical. I told him I've taken a couple of good whollops and kicks, but they are so rare. He said he will be looking at the test results to see if he might have lewy body disorder. He doesn't believe that is what this is, but he does feel that it's his responsibility to cover every concern. What a relief to have doctors who understand. My heart breaks for you that you went through Alzheimer's with your parents, and yet I am also in awe of you for going through Alzheimer's with your parents. The hardest part, I think, is not only "losing" our loved ones with the illness, but also all the changes - how they become almost unrecognizable. And then, they can say and do the most cruel things. Some days I wonder if I will have the strength. Twelve years... That must have been an indescribable trial for you, and so heartbreaking. You know, I bet God will give you an extra special set of fluffy white wings and an amazing shiny halo for the love, care and commitment you've bestowed upon your parents. In my book, you are AWESOME! God bless you!
Peggy, I did email you - did you receive it? I just want to let you know, I did start that support strain you mentioned. I kept it for all farmgirls who are dealing with all types of dementia, because I think we are all going through very similar, although notably different, experiences. I really feel it might be a true blessing to all the Farmgirl patients, loved ones and caregivers who are in the thick of this. Thank you so much for suggesting it!
Girls, I would really like to switch this conversation over to the "Farmmgirl Support Group for Illnesses of Dementia" that I started yesterday, if that's okay. Here is the link: http://www.maryjanesfarm.org/snitz/topic.asp?TOPIC_ID=76108 I really hope that everyone who is affected by any type of dementia will hop on, share and care. Whether you're the patient, you're a loved one, a caregiver, or someone who has already gone through this, I think it's going to be a wonderfully uplifting strain.
Have a great weekend. Love you all dearly!
Hugs,
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
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hoosiercountry
True Blue Farmgirl
572 Posts
karla
north port
fl
USA
572 Posts |
Posted - Jul 03 2016 : 6:30:13 PM
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Nini-I did not become a nurse until I was 39 years old. Until then I never understood the many faces of Dementia. My grandmother had Alzheimer's, she was into the late stages when I first saw it. I was 36, visiting with her new great granddaughter, she kept referring to me as my mom, (who had passed) and my daughter as me. I was so confused during that visit. The house reeked of urine, grandma was not very clean, and the house just plain bad. I consider that my first real lesson about this ugly disease. I later went on to nursing school, I would study the many types and stages of the disease, but you don't really learn about the many real faces of the disease until you have lived it first hand. The books can say all the words to describe things that can happen, but the real words come from those on the front lines living day after day with this.
I have watched and learn much from so many caregivers and even the person them selves who are effected with Dementia. I have seen first hand how it slowly steals away the one we love, only to replace their mind with confusion to even simple daily joys of life.
I am at this time taking care of a dear lady with Dementia, I have been with her for 6 years, doing live-in. She has mentally gone down the last two years, I still have trouble accepting this, I who is the nurse, trained to know how to accept and deal with this, but when you care for someone it's hard.
I so have one beautiful story to share. I had a patient with Alzheimer's, I went every week for over 3 years, and set up his medications, did a nurse visit/wellness check. He had live in caregivers. I would always get a hug and a smile when I arrived and when I left. I watched him slowly slip away, until the time came for Hospice. Now during all those visits not one time die he ever say my name. That last week I went to see him, he was in bed his eyes were closed. I went and gave him a hug and kiss on the cheek, I said " I love you Jessie", and ever so clear he said "I love you Karla" that was the only time he ever said my name. That was my moment.
There are moments in this dark disease, hang onto those moments, they will get you through.
I am sending those of you dealing first hand with this a warm hug, I can not fully understand your pain, but I am here to help with support in any way I can. Karla |
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katmom
True Blue Farmgirl
17161 Posts
Grace
WACAL Gal
WashCalif.
USA
17161 Posts |
Posted - Jul 03 2016 : 11:11:39 PM
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I just finished reading all your words.. thoughts...
what brave women you all are...
I wish I could eloquently write my thoughts... but... all I can do is wrap you ladies in quiet hugz and prayers... please know that you are always in my thoughts.
hugz..
>^..^<
Happiness is being a katmom and Glamping Diva!
www.katmom4.blogspot.com & http://graciesvictorianrose.blogspot.com
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Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Jul 05 2016 : 07:08:51 AM
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Karla, thank you so much for sharing your story. Please always feel free to share anything you think is important or helpful! I know we would all appreciate that! If you would like, please also post on the Support Group strain: http://www.maryjanesfarm.org/snitz/topic.asp?TOPIC_ID=76108 What an amazing thing that your patient said that - be still my heart! God bless you for the care you give - it takes a very special person, indeed! Much love to you!
Love you, Gracie girl! Thank you... Words aren't necessary... Love and prayers mean everything!
Big hugs -
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
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Across the Fence: Family Illness... Catching Up! |
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Family Illness... Catching Up!
