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 Farmgirl Support Group For Illnesses of Dementia!
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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Aug 26 2016 :  05:27:44 AM  Show Profile
I did a Merit Badge last year where you read the little Awesome book every day and kept a journal of gratitude. It was a great exercise!

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

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Aug 30 2016 :  09:23:18 AM  Show Profile
I have a friend who married a man over 20 years her senior. They have been married 17 years now. He was diagnosed earlier this year with Alzheimer Disease. It came as a great shock to her, but she's a "get things done" kind of person, so she immediately went to work finding out what she needed to do to be supportive and to care for him. She posts mostly positive little snapshots of their lives in facebook. Recently she posted a picture of him sitting on the edge of the bed at 4:00 in the morning, happily planning his next model railroad layout. He thought it was quite silly to be doing so at that time of day, but had some ideas and wanted to get them down on paper.

I kind of think maybe the process is smoother if everyone admits what's going on -- stares it right in the face -- and gets the information and help necessary to deal with the disease.

My father just denied and denied and protected my mother for such a long time. Everyone else could see that she had dementia -- all of us kids had seen it for years -- but he made excuses for her. I wonder how much easier things would have been for them had they gone to the doctor and had a good solid diagnosis even a few years ago. I am grateful DAILY that they are now in their wonderful assisted living facility with staff that take such good care of their needs -- emotional and physical. They are still in denial, but at least they are getting the support they need.

So what do you all think? Would you want to know if you had dementia?

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

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Oct 08 2016 :  09:05:02 AM  Show Profile
You know, Marilyn, I honestly think I would want to know. It would help me not be so afraid of the changes I would be noticing, and help explain a lot of weird things that would be happening. For my husband, it was very difficult at first. Sometimes I still think he is in denial, even though the doctors have all now spelled it out clearly for us. Thing is, as a person of faith, I would always be looking for and praying for a miracle - I would never (and will never!) give up on God's mercy and healing. Truth is, though, He has a purpose in all of this. We may not see or understand or even want to have things happen to us, but I just keep telling myself this all can't be for naught. I don't wish this on anyone. But I do know God has a purpose in it, and that really helps me get through when I just can't understand. Who can know or understand the ways of God? I just have to trust that He has our best interest at heart, no matter how difficult things get.

So we finally got to meet with my husband's new neurologist. LOVE her. He now has a new psychiatrist, as well. All of his doctors, with the exception of his PCP and his headache specialist/neurologist (different neurologist specializes in dementia), are now in the same group at the same hospital. What a refreshing experience: They all specialize in illnesses of dementia, they are all on the same page, they all have access to all of his records, they all confer with each other concerning his care, they all return phone calls in a timely manner... they're just on top of things, and I am extremely grateful. To date there hasn't been a specific dementia specialist in Pittsburgh, Allegheny County or in our County, for that matter, but we were informed that they just hired a new specialist about whom they are very excited. He will be starting up a dementia clinic, with all sorts of studies and trials, etc. My husband will be a candidate for his program. He won't be up and running until March, but since my husband is already in this group, I can call in two months and he will be right at the top of the list to see the new doctor - how exciting is that? God is so good. SO good.

Life has been nothing but a whirlwind of appointments, phone calls, faxing documents, following up on letters and more phone calls, dealing with insurance, working on getting services in place, etc. (The doctor said to get services in place NOW, even though he is only at the beginning stages. Said it's much easier to do it now than when he is in the throes of the disease). It's a vicious cycle. If you were to look at my calendar of appointments and to do's, you just wouldn't believe it. I don't know how some of the older people do it. I have a background in benefit administration, so I have a general idea of what to do (although a lot has changed in twenty yeas!), but someone without this background could really become overwhelmed quickly. I myself feel overwhelmed sometimes. Some days I just wonder how it is that the office people I deal with are getting paid to do a job when I spend all of my time doing their work for them, you know? Thing is, though, that if I make all the phone calls and do other tasks myself, then I am assured that it is done and I don't have to worry about anything - especially my husband - falling through the cracks. The last thing I want and need right now are unpleasant surprises. I swear when this is all over I'm going to consider starting a special agency for patient and family advocacy! Long story, but let's just say I am very good at making connections and getting things done all around!

I haven't started a journal of gratitude, Marilyn, primarily because that would mean adding just one more "to do" to my daily list (LOL!), but I like that idea! Instead I pray constantly, and I thank the Lord with an entire list of things for which I am grateful. It is right and good to do so, and you're right, it is an extremely uplifting exercise, helping me to focus on the positive! I am totally with you! Good things MUST be celebrated! :)

You know, sometimes I wonder about the whole denial thing. See, when my husband was first sick, people noticed the changes, but they all brushed it off to something or other. THEY were all in denial (some still are!). My son and I were really the only ones who really, REALLY knew anything was wrong. And to be honest, we didn't get a whole lot of support about our "suspicions." We were constantly questioning ourselves. Were we imagining this? Were we overreacting? We would constantly ask each other - trying to keep each other in check. We didn't want to overreact, and we didn't want to ignore anything. It was a tough call. Nobody else seemed to really see it, so it was hard to believe our own eyes and instincts, if you will. Now, it's really hard to take when people notice or ask what is wrong with my husband, or when we hear the doctors discussing it. It's so surreal. FINALLY someone "gets" it and FINALLY someone "sees" it, you know? It hurts. It's good that others are aware, but it still hurts deeply to think about the reality of it all.

So my thought is, your Dad being with your mother day-in and day-out, it's quite possible that he just didn't see it like everyone else. He didn't have a third party who was always there to commiserate with over the changes your mother was going through. He didn't have someone to stop him from questioning himself on a regular basis. He probably just wrote everything off until it was just too hard for him to accept, if that makes sense. I mean, these changes we see can easily be written off to a person getting grumpy in their old age, or a person losing their sharp edge of youth. It's similar to the frog in the pot of water. You put the pot on the burner, the water slowly heats and the frog's body temperature adjusts. The frog doesn't even realize he is being cooked, and suddenly, he is done - stick a fork in him! Your dad probably was a bit afraid, too. It's so complicated. It really would've been so much easier had they gone to the doctor early, though. But look at my husband. He underwent significant changes (to us) for almost three years until the doctors saw it for themselves. And not every doctor is willing to attribute symptoms in an older person to a type of dementia. Sometimes, as frustrating and as sad as it is, it just takes time. I'm so glad that your parents are in a good assisted living facility now. Not only for them, but for you and your siblings, and the peace of mind it must give you. This is such a painful, difficult situation to get through, even when you're not the primary caregiver. Knowing someone is watching over them when you cannot must be such a relief! I just hope and pray that if and when the time comes to make those hard decisions about my husband that I have the wisdom and courage and strength to do so. I can't even THINK about it right now! Ugh... Breathe, Nini... Breathe...

Well, that's all for now. Thanks for being there and putting up with the big gaps in between my postings. It's just so hard to squirrel time away for myself nowadays when I'm NOT falling asleep at the keys! I hope you understand - God BLESS you for understanding!

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 Oct 08 2016 09:12:20 AM
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ceejay48
Farmgirl Legend/Schoolmarm/Sharpshooter

13370 Posts

CeeJay (CJ)
Dolores Colorado
USA
13370 Posts

Posted - Oct 09 2016 :  12:11:18 PM  Show Profile  Send ceejay48 a Yahoo! Message
Girls, thanks for continuing to post! I'm not dealing with this with a family member but have some understanding of the challenges.
I, too, believe God has a purpose in everything . . . and I try to remember that and TRUST, TRUST, TRUST HIM!
Sending my prayers for you both!
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 Oct 09 2016 1:31:50 PM
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violetrose
True Blue Farmgirl

960 Posts

Ruth
Epworth GA
USA
960 Posts

Posted - Oct 09 2016 :  1:17:36 PM  Show Profile
Nini and Marilyn, I am so, so sorry for what you are dealing with, and I can't even imagine the day in and day out responsibilities you have. Know that you are in my heart and prayers! I am sooo very thankful Nini that you now have a team of doctor's that will listen to you and are working together, that is a big answer to prayer! God is in control, and this did not take Him by surprise! Nini as I was reading about your background skills, even that was in His plan all along. Thankful that you have that ability, as many, many people do not, nor do they even know who to go to to help them. Take time to take care of you and Sam, a must for a caregiver. Wish I was closer to you and could do something to help. Cook a meal or run errands, but I can and will keep on praying for you and Sam to have everything you need to get through this. Keep your eyes on Him from whence comes your strength! love and prayers sweet friend

Farmgirl Sister # 1738

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

St. Augustine
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Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Oct 09 2016 :  2:21:40 PM  Show Profile
Oh, Ruthie! I soooo owe you a letter and a phone call! I love you, sister! You know, I never looked at it that way, but you're right - God really has had a plan for us all along, hasn't He? He is AWESOME!!! This new team of doctors is such a blessing, I can't even begin to tell you. The one thing I've found is just how broken the system is (here, at least). It was such a trial trying to get him in to see somebody at all, let alone the PERFECT somebody(ies)! Such a blessing! But it makes me feel very, very sad to think of all the people out there who do not have an advocate, who don't have anyone to help them maneuver through the system, who don't understand what is being said to them (let alone all the forms to complete and instructions as to what needs to be done!), and who simply fall through the cracks. My husband had a moment of clarity and understanding last Monday after I had spent an entire day (from 8:00 AM to 5:30 PM) making phone calls to get his appointments scheduled and to get all his documentation and insurance coverage in order. Out of the blue he came up, put his arms around me just like he used to, and said, "Thank you for doing all of this. Thank you for loving me this much." I just melted into his arms and cried. It's so hard, you know? I don't want him to worry and I don't want him to see me cry. Forget about me - I can only imagine what this is like for him! But God made me strong, and you are so right: He HAS prepared me and brought us to this point. Even when my grandparents were alive, God was preparing me. My grandfather had Parkinson's, and I was able to help by taking them to the doctors' appointments, helping Grandma make sense of the bills and EOBs, etc. I learned a lot more than I realized. That experience is something that I do reflect on from time to time, and I thank God that I was there to listen to what the doctors said. Somehow it makes what is happening to us now a lot less scary.

As far as a caregiver coming to help, it feels really weird and uncomfortable having to think about having someone to come in and help at this stage. He is doing okay, all things considered. I had a good long talk with a close friend this afternoon who really put it into perspective for me, though. Again, it was kind of the whole cooking the frog in the pot situation (me being the frog). I get it, I do. It's just so surreal, that's all. When I called to find out about services that will be available and how all of that works, it was explained to me that getting it all in order right now will just make the transition to having those services in place a lot quicker when it does become a necessity. Although I am quite confident that I will be able to handle most of this on my own for a good, long while, I do realize that there will be times that I will need help with the physical stuff, especially. So I got the ball rolling. There are a few other things I have to do/get in place, and then it still takes quite some time before everything is approved. At that point, they will send someone in to do an assessment of his abilities and needs, and then, depending upon their findings, they will either start services right away or keep us on file until his illness progresses. I'm sure we won't have an immediate need when they do come out, but doing this whole process will apparently enable them to get services in place fairly quickly once they become necessary. I keep telling myself to suck in my pride, that it's probably going to be a life saver to get this all done now rather than when he is having extreme difficulty. When that time comes, it is not going to be a matter of pride, what is going to matter are his needs. Did you ever see the movie, "Mr. Baseball?" Well, I keep hearing the interpreter's repeated word of advice to Tom Selleck, "ACCEPT!"

Please know that your prayers and friendship are the greatest blessing - always! I just love and adore you! :) It's really painful to think that the day will come when I can't do this by myself anymore. I'm just going to take things one step at a time, counting every blessing along the way! I can do this! I am a daughter of The Most High God... He will show me the way and take care of us! I just constantly ask Him for wisdom, guidance, strength, mercy, grace and abounding love. I can do this BECAUSE of Him! And because of all the wonderful prayer warriors and beloved people in my life - like you! You're the best! You all are! Thank you!

Hugs and love -

Nini



Farmgirl Sister #1974

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


Edited by - Ninibini on Oct 09 2016 2:25:42 PM
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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Dec 01 2016 :  09:58:16 AM  Show Profile
I have been off the message boards for a while (crashed hard-drive=lost passwords!!!), but I am back now

My dear Daddy passed away on October 26 with me holding his hand. He was not in pain and was at peace. My mother is doing WAY better than any of us expected. She is making an effort to join in the activities at the residence and is eating more and gaining a little weight.

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

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Dec 01 2016 :  10:44:41 AM  Show Profile
Awwww... Marilyn! Are you okay??? I am so, so sorry... But am so, so happy for you that you were there, and that you were the one to comfort him as he passed from this world into the next, and that he was not in pain. Such a blessing. God bless you. My heart is crying for your heart - you must miss him terribly.

The way your Mom is handling things is amazing. It has to be the dementia. My husband doesn't react to things "normally" very often anymore. It's quite disconcerting at times. At least your mother isn't suffering terribly. That is definitely a blessing. It's so good to hear that she is getting involved with activities, that is so important for her, don't you think? And it's great to hear she is eating and starting to gain a little weight! YES!

Only had a minute to pop on and check the posts, but will be in touch again, soon. Please know you will be in my thoughts and prayers, Marilyn, and that I am here if you need me. Love and hugs to you, sister!

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
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Dec 01 2016 :  1:18:35 PM  Show Profile
I am doing fine, thank you! It is never easy to lose someone, but you are right about the positives in Daddy's passing. The hospice folks deserve haloes! The nurse was with us at the last, and she was so sweet and helpful. I think she really helped get my mother off on the right note.

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

521 Posts

Karin
Nashville In
USA
521 Posts

Posted - Dec 01 2016 :  3:57:54 PM  Show Profile
Marilyn, I posted on the over 50, but wanted to post here also. I just read that you lost your dear daddy. I am so very sorry. I know how hard it is to lose a beloved parent, but am so glad you were able to be with him. Keeping you in prayer through the coming days.

Karin
Sister #2708

Romans 8: 38,39
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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Dec 08 2016 :  06:35:12 AM  Show Profile
Thanks to everyone for the kind wishes. I can't believe some days that Daddy is gone, but when I do remember it, I am not bursting into sobs anymore, so I count that as progress! Mother certainly has her down days, but she says she does a lot of smiling, too. She said she remembers silly stuff and then laughs about it -- she says she really only has happy memories of their life together, so that's what she concentrates on. I wonder where the aliens hid the pod.......HA!

Nini -- my younger friend with the older hubby with Alz went through the whole exercise of getting additional help in place long before he was going to need it. She said they worked on it together through their doctor and hospital and a support group, so the process was very collaborative and he was able to help make some of the decisions before he was too far changed to do so. Every situation is certainly different -- she has said she is very lucky that her Don is still his sweet self -- just doesn't remember things and has his days and nights out of whack.

Every day I thank the Lord that I have my life and not anyone else's. Mine may not always be perfect, but you never know what kind of troubles and trials someone else is going through. I have so much to be grateful for.

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

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Dec 20 2016 :  06:09:24 AM  Show Profile
Spoke to my mother yesterday. I wanted to make sure that she had received her Christmas package -- she had, but she had already forgotten who sent what! She DID remember eating the chocolate covered cherries, though! ha ha She is really doing so much better -- better since Daddy passed and certainly better than any of us expected her to do. Possibly the lack of sustainable memory helps, I don't know. But she is participating in the life of the residence moreso than when it was the two of them. She is also eating (everything that's not nailed down, evidently!) since she doesn't feel that she has to only eat when Daddy is able to. So no great loss without some small gain, as the saying goes. Happy Christmas to everyone -- I am counting my blessings this year.

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

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Dec 21 2016 :  08:52:43 AM  Show Profile
I'm so relieved to hear your mother's doing well with all of this. I was worried about how she would handle things long term. This is never easy on anyone at all. How are YOU doing? I lost my dad last year around this time, and I think about him every single day, still have my moments. Miss him so much. Thank God we have the hope of a better place for our loved ones. We will be together again one day. But being the one who remains behind, especially at the holidays, can be rough. Please know I'm thinking of you and praying for you. Much love - 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
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Dec 22 2016 :  06:29:15 AM  Show Profile
Nini -- Thank you. You must have been feeling my sadness vibes -- ha ha. I have always heard people say that the holidays are so much harder when you are grieving for someone, but now I understand that fully. I think I am doing well and then all of a sudden I am in absolute sobbing sadness! Lucky for me, Dude understands, having had so much loss himself, and is patient and kind with me. We just do the sad thing when we need to and enjoy the happy memories when we think of them.

On a different topic, I had closed my facebook account a couple of days after the election, because people were being so dreadfully hateful and I just did not wish to participate in that. I haven't really missed it for the most part, but I think I may be ready to open a new account and just limit it to family members and a few close friends. I find I am thinking of all the Christmas pictures of the nieces' and nephew's kids that I will be missing. Wish me luck -- I'm goin' in!

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

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Dec 23 2016 :  06:48:18 AM  Show Profile
Nini -- How is your dear husband doing? I often think of you and how your family must be dealing with all the changes. I hope that the doctors are finding ways to make his life and yours easier through this transition. Sending you warm hugs and warm wishes.

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

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Jan 04 2017 :  07:41:44 AM  Show Profile
Today is my mother's 85th birthday. I just called to sing to her. She is in Idaho and I am in PA, so I waited until I figured she was at least up. She said she was sitting in her room, working a crossword puzzle (which thrilled me!), and I was the first person she had even talked to today. She usually likes to wait a little bit to go down for her breakfast. She had received a letter from one of my nieces yesterday and said it was FULL of pictures -- brilliant!!! We all continue to be very pleased with how well she is doing after Daddy's death. Maybe the dementia helps keep her mind from stopping and dwelling too long on one thing. Who knows. At any rate, she is gaining a little weight, which she desperately needed. She is participating in group activities and interacting more with the other ladies who live there (she was soooooo jealous of Daddy that she would NEVER talk to any of the ladies, in case they would steal him away!!!), and enjoying her crosswords and coloring books. I know she has her sad times, but for the most part she has really tried to be positive and make her life happy. I was thinking this morning that I am very proud of her.

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

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Jan 05 2017 :  06:30:54 AM  Show Profile
Well, I had a voicemail from my mother last evening. Her early morning mood and clear-headedness were GONE by evening. (What they call "sundowning" in the Alz world) My baby brother who lives in Japan had called her to wish her a happy birthday and she was all upset because the card I had them put on the flowers I sent had said "Happy 85th Birthday." She was completely convinced that the calendar was all messed up and that she was only 81. Sigh. John is not good at dealing with Mother's moods, so he just sort of side-stepped the issue and tried to get her onto a different topic, but was not very successful. The bit was between her teeth, as they say. He texted me sort of upset -- felt that he had made her unhappy. I facetimed with him for a while and got HIM calmed down. By that time, I had a voicemail from Mother -- I had Dude listen to it, it was so rambling and nonsensical. I didn't call her back because I just do not have the emotional energy some days to talk to her when she's having a bad time. I figure she is better off to just go on to bed and wake up happier tomorrow. So this morning I saw that she had called yet again and left another voicemail last night -- more disjointed than the first one. Hopefully she got some rest and will be doing better today.

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

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jan 05 2017 :  1:58:34 PM  Show Profile
Oh, Marilyn... So frustrating! Sometimes it sounds as though she's doing better, at other times she is just not okay. Very, very tough thing for loved ones. Funny story, though: I can't really fault your mom for her confusion with birthdays! When I was in my late 40's, my foster daughter had me convinced I was a year older than I actually was! LOL! I believed it and told everyone that I was the wrong age for almost the entire year! I lost an entire year because of her! LOL! She is always so good with dates and times and things like birthdays and age, and I never really give my age much thought, so when she told me I was wrong about my age, I believed her! So please go easy on your Mom about that one... I think at our age, everyone gets to have a little lee way with the number of years! LOL! I am so sorry your brother was so upset, though. It must be so hard to be so far away, as he is. He's lucky to have you for a sister! :)

My hubby is changing daily. Lately he has been having a lot more trouble with anxiety; he obsesses about the silliest little things (nothing is silly to him); he paces all the time, or his feet or hands are always shaking. He does take walks up and down the sidewalk a couple of times a day, which helps, but I watch, worrying that he might forget where he is (that is what was happening when he was working - he'd go down a familiar stairwell, then not know where he was anymore - talk about frightening!). He likes his independence, so I watch from a distance in order to not embarrass him, or make him feel like I'm treating him like a child. The man needs and deserves his dignity and self-confidence. But the day is coming that he won't be able to go on his own, and I dread having to tell him he can't go alone. I keep telling him it would do both of us good to join a gym and go three or four times a week, but he says no. He says he just has no interest in anything, no desire to do anything. He knows that's wrong, but that's just how he feels.

He also has a terrible fear of being alone. He frequently follows me from room to room, sometimes being literally on top of me when I turn around. And if I happen to be busy in another room, he will check on me every few minutes, just to make sure I'm still there. I try to engage him in whatever I'm doing, but he usually says no, that he doesn't want to. I've tried giving him things to do, but he can't concentrate and loses interest very quickly, or becomes terribly frustrated and quits. He seems to like plopping down in his easy chair to watch re-runs from the 60's and 70's, or game shows... It drives me nuts because it reminds me of what my grandparents would do as they got much older and less able to easily get around. He is not an old man by any stretch, but he is aging like you wouldn't believe. I guess if it makes him content for a time, there is no harm; but I sure would like to find something to keep him busy and engaged, and something that helps his mind be more active and challenged.

The other day he was more lucid than usual, which was like a breath of fresh air. I had taken him for a drive just to get out and get a change of scenery. He wanted to know if I thought he was depressed. He wanted to know why this was happening to him. I told him I didn't think he was depressed, as in being in depression, but yes, perhaps a little bit. After all, everything he had known his entire life had suddenly changed. He wasn't working, he couldn't do the things that he used to enjoy.. That's a very hard thing for a person to deal with, but I think he's handling it well, all things considered. I likened what is happening to him as being similar to driving a car. If the car is working properly, it's easy to maneuver to get it to do what we need it to do. But when there is something wrong, we scramble to fix it or adapt to the change. (For example, when the brakes don't work, we use the emergency brake. If that doesn't work, it becomes very difficult to operate the vehicle properly. We definitely tend to panic when the brakes don't work.) In the same manner, our souls maneuver through life with our bodies. When our souls want to do something or express themselves, they naturally use our bodies to do so. When our bodies don't work properly, our souls try to figure out how to adapt and accomplish the task at hand. When our souls can't figure out how to get our bodies to do what they want them to do, then our souls become uneasy, frustrated, confused, anxious; sometimes even scared. I asked if that made sense? Did that help explain how he feels sometimes? He said he didn't know. Then he said, "Sometimes." He confided in me that not only is he unable to concentrate, he gets really confused very easily. He said he is confused all the time. He said sometimes when someone is speaking, he understands the words, but he just can't put them together and make sense of them. That's why he asks me to repeat myself all the time. I told him if he could remember to tell me that he doesn't understand instead, it would be more helpful to me in helping him. I told him I would try harder to remember that that is what's happening to him, but sometimes it seems more like he isn't paying attention, and that is frustrating to me. He just said, "Oh." Then he slipped back into his own world. This is not easy. I feel very badly because sometimes I really do forget there is more going on in his head than meets the eye. Sometimes I react to him as if he is a perfectly healthy individual. He's not. I need to keep myself in check, too.

It's so hard because most of the time he's here, but he is so different that it's like he isn't here. It's like my son and I are going through the grieving process while he is still with us. I try to keep everyone chipper and lighthearted and happy, but there are just some days that his changes are so striking that tears just well up and my throat tightens and... well, you get the idea. Thankfully, other than the natural agitation or anxiety he is under, most difficult concepts seem to go right over his head. There is such a disconnect; it's indescribable, but it's heartbreaking, believe me. We focus on the positive, but there are times where it feels like we're already grieving losing him because part of him is gone - or leaving, if that makes sense. Ugh... Sometimes I just cannot believe this is happening.

So now we're revisiting all of the legalities for both of us. SO much fun, making life decisions. NOT. We have already gotten a handle on the financial aspects, and we already have our wills and advanced directives in place; but there are a few loose ends for which we're trying to make decisions. (I can't get over how complicated all of this can be. I stress to everyone we know that they have got to, got to, got to, got to, got to get their own documents in order. Life has a funny way of throwing us curve balls, doesn't it?) We are just taking our time and talking to family members, and making sure we BOTH have a good grasp on the situation before we put any pens to paper. I hate going through all of this again, but things have changed since we last spoke with our attorney, and I just want to make sure all of our bases are covered. If anyone has any thoughts or advice, I sure welcome your sound input!

I'm unsettled by all of this, and sometimes I'm really sad, but I am not afraid. I know God has everything under control. I really do. Since Ruthie pointed it out, I really do see His hand in everything leading us up to this point in our lives. He knew. He prepared us. Knowing and recognizing that really does give me an immeasurable amount of peace in all of this. I just feel the need to ensure my family is taken care of, you know? I always have wanted to do some sort of manual with all the instructions as to how to handle things if anything happens to me. I started putting one together when my husband first became ill, but then taking care of him took over and time flew by. Now it seems more urgent than ever. I'm going to be placing THIS chore back at the top of my to do list, for sure! I just need time!

On a happier note, Christmas was wonderful. Our foster kids and grandkids came for Christmas Eve and we had a wonderful time. The kids got light up skateboards, which were a super big hit, especially once nighttime fell. Watching my foster granddaughter zoom down a slight incline toward a wall was a bit hair-raising, but her reflexes are so much snappier than mine, and she just slammed her feet to either side of the board and saved the day! LOL! As a result, dear old Nini needs to visit with Miss Clairol very soon! LOL! We also really enjoyed the snowman hot chocolates (another post), there were cookies galore, and everyone really enjoyed being together. My husband even smiled a couple of times. "Wonderful" doesn't even describe it! Afterward we headed next door for the much-anticipated annual Feast of the Seven Fishes celebration with our neighbors. It was so much fun, but my husband was really exhausted from having company all afternoon, so he pretty much kept to himself. People were pretty taken aback by the changes in him, but they understood. Everybody just loves and adores my husband - he's just that kind of guy. :) Then on Christmas day, I had a special, funny gift in store for my guys. Even though I have marked their underwear with their names, and even though our 20-year-old son's socks are stretched way beyond the length of my husband's feet, they always seem to fight like little children over which belongs to whom. SO, for Christmas I filled each of their stockings with socks and underwear that are undeniably their own. My son thought it was pretty cool to find his featured Marvel character. My husband's are in the patterns of all the Star Trek uniforms in gold, blue and red - captain, medical, engineer, etc. Each time he pulled out a new set, my husband just giggled and giggled. I asked if he would really wear them? He said, "Sure!" Then I made the mistake of saying how great the conversations will be when he goes to the doctor's office! He frowned a little, then cracked up thinking about it! He said he doesn't think he'll wear the red ones to the doctor, though, just to be safe! LOL! (In case you are unaware, the running joke/reality is that guys in the red uniforms are the ones who always are killed in Star Trek! LOL!) His laughter was an absolute Christmas miracle! One that our son and I will treasure forever! I had hesitated buying them, but thank God for my foster daughter who convinced me I just HAD to do it! LOL! Whodathunkit that one of our favorite Christmas memories would surround socks and underwear?! LOL! Just like Grandpa always said: Laughter truly IS the best medicine! ;)

So, that's all for now... Always must try to end on a happy note! ;) All will be well, or, at least, what it is meant to be. And we'll get through this one day at a time, one step at a time. Right now, it's all about the moments and memory-making, I think. Much rougher times are ahead, but there are going to be a lot of life's little blessings to help carry us through! :)

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 Jan 05 2017 2:01:46 PM
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Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jan 07 2017 :  11:50:05 AM  Show Profile
Girls - Will you please pray for him? I didn't know this, but a dear old friend stopped by over the holidays and mentioned to my husband how his mother also had FTD. He went on to tell my husband - GOD only knows why - that his mother was gone in less than eight years! My husband didn't confide this to me until a couple of days ago. Since his buddy said this, he has harbored this ungodly fear that he is going to die early - and soon. UGH! To make matters worse, I had to discuss some estate stuff with our attorney the other day. My husband was planted in his easy chair, zoned out watching t.v., and I was in another room. For planning, the attorney was asking about my husband's diagnosis and prognosis. My husband walked in the room as I was responding, and overheard more upsetting stuff that I hadn't told him. That really put him into a spin. I had a good, long, encouraging talk with him once he finally opened up to me about it, and I think he is feeling and doing much better. I even had him laughing and talking about more positive things that are to come, but still... I feel like he has been wounded by this and I feel just terrible. Worse, I feel like I should have been there with him and his buddy during the entire visit so I could fence the conversation. It just never occurred to me that I would have to do such a thing. Ugh. His buddy didn't mean it; apparently it just slipped out and he realized what he said as soon as it passed his lips, but still... UGH! So, please, if you're a praying woman, please pray for him. Like I said, he seems to be doing much better now that we've talked, but dang, I don't want him to worry about things like that.

Have any of you ever had to council a loved one about a terminal illness or the prospect of a future cut short by illness? How did you handle it? What did you say? How did you comfort them? SO hard...

Love and hugs - and THANK YOU!

Nini



Farmgirl Sister #1974

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


Edited by - Ninibini on Jan 07 2017 11:52:13 AM
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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Jan 12 2017 :  06:46:38 AM  Show Profile
Nini -- Thank you so much for your wonderful posts. I know it is partly good therapy for you to put it all on the page, but it is so helpful for the rest of us, as well.

As far as Mother's age goes -- my brothers and I have had a good chuckle over it. I mean, what does it really matter, anyway? If she's 85 instead of 81, who really cares? It's not like she is at school or filling out some kind of legal document, or anything.

And speaking of legal documents! I am so glad that you are working all that out, but sorry that you have so much of it to do on your own. It is tough to talk/think about when you are both healthy, but with your husband's condition, I am sure it's just that much harder. Sounds like he can still understand lots of things, but you never know which ones he is NOT going to grasp. How frustrating for both of you. Bless you so much for being so sensitive to his feelings and trying to think of things from his side. Dude and I are working on our wills now. Ever since his brother died, he has been working on cleaning things up. We have done lots of physical stuff -- getting rid of "junk" and "stuff" that our kids are NOT going to want when we're gone, but now we are working on the paperwork. Since we are not married, things have to be laid out pretty clearly on paper, but we have a great attorney and Dude has talked to me about every step of the way and what exactly we want to accomplish. He has chosen two of his kids to be co-executors of his estate and has already spoken to both of them about what he wants to happen for me. I am supposed to have a sit-down with the attorney in a couple of weeks to discuss my particulars. We may yet end up getting married, if that will make my financials work out better, but at this point in time I don't think it will.

My ex called me the other day to let me know that my dentist's office had sent a reminder card to his address (that's where the insurance info goes), and told me that he is wearing a Holter monitor for a couple of days to see if he has afib. He had noticed his heart skipping beats when he would be on the elliptical trainer at the gym. He works out about 5 mornings a week to keep his arthritis from seizing him up completely, but his health is not very good, really. The VA has decided that the prostate cancer he had a few years back was caused by his exposure to Agent Orange in Vietnam. I hate to be so clinical and sound so self-serving, but with his health as bad as it is, I have to be very VERY sure that our financials have been severed completely, as well. Sigh.

In much better news (I like your idea of ending on a positive note, Nini!) we are getting ready to leave on the 21st for our annual trek down to St John for a week of sunshine and beaches and snorkeling and relaxation. I have a brand new snorkeling mask that is supposed to be great for beginners like me, because it lets you breathe through your mouth AND your nose. I am really looking forward to seeing what's under the water I have been wading in. I think! ha ha ha The beach where we usually go always has rays swimming by and schools of tiny silvery-blue fishes -- also some sea turtles. I am looking forward to just being with my sweetheart for a while with no customers.

Love you, Nini. I think of you so often.

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

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jan 12 2017 :  7:25:50 PM  Show Profile
Marilyn! You're vacation plans sound wonderful!!! I have never mastered the snorkel. I guess I'm just not meant to breathe under water! LOL! But it sounds like you're going to have SO much fun - and a lot of much needed R&R! I'm so happy for you!

The legal stuff...I am SO happy to know you and Dude are doing this now. We just never saw any of this coming, and now we have to make critical decisions while we're in the midst of chaos. Not fun at all. I guess what it boils down to, though, in the end, is that no matter what happens, God really and truly has always prepared us, and has always provided. Even if we make mistakes, He will ultimately make everything work together for our good. We just need to do the best we can and let God do the rest, that's all. :)

Yeah... As far as putting it all down, it isn't easy to do that, believe me; but I figure there have to be others out there who need to know they're not alone in this, and that what they're experiencing is quite normal, if you can even use that term. Plus if by some chance anyone else can chime in with their perspective, it can only help us, too, right? :)

We saw his psychiatrist the other day. He feels that, other than a few key symptoms that directly correlate to a specific type of FTD, that my husband isn't presenting as classic FTD, but rather more as CTE. At first I thought maybe that would be a little better somehow, but it won't. The dementia aspect would still be there, of course. But CTE comes with its own scary challenges. As they have always told us, his symptoms span a range of the different diseases of dementia, the key is that they all manifest as frontal lobe issues. In the long run, there isn't a cure for ANY of this, they can only treat symptoms and watch what happens as time goes forward. <Sigh> I just want him to be safe and comfortable and happy, that's really all that matters.

My mother said something along the lines of what you did about your Mom's age. She said that when my grandmother was experiencing dementia symptoms, the doctor was having difficulty with a precise diagnosis - he started listing all the possibilities, and my Mom stopped him and told him, "I really don't care WHAT you call it, doctor, just please make her comfortable!!!" I think that's where I am with all of this. No matter what it is, they know its manifesting in the frontal lobe. They may not know for years what this is exactly, let alone ever! Even if they can't EVER pinpoint it, it doesn't matter because the fact remains that they can't cure any of the possible illnesses - they can only treat the symptoms. What it all boils down to is that the man is suffering and declining. So, for Heaven's sake, please doc, just help him though this! Make him comfortable! 'Just have to pray my way through this, you know? Just have to pray my way through this... We all do.

To be clear, no one has changed their diagnosis; the psychiatrist is only sharing his opinion based on his observations. For this kind of thing, it really does take a village of doctors, time and seeing how things progress. Right now I'm waiting to hear back from the neurologist. The dementia specialist may not be in place for a while yet, so the psychiatrist would like him to be seen. Also, I have to schedule him with the speech therapist.

Fun stuff...

I'm really looking forward to springtime. Well be planting our garden again before we know it, and the air will be fresh and new; days will be longer, the birds will be back; we will be able to walk barefoot in the grass... Everything comes full circle eventually. It will for all of us, too. :)

Love you, too, sister. Thank you for being there. Thank you ALL for being there!

Hugs -

Nini



Farmgirl Sister #1974

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

Edited by - Ninibini on Jan 12 2017 7:32:13 PM
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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Jan 18 2017 :  07:09:08 AM  Show Profile
So...my eldest brother beeped our siblings group with an IM last night, just to let us know. Mother has been complaining about the food at the residence where she lives. Evidently she had what my dear brother referred to as a "poopy problem" over the weekend and had to go to the hospital on Saturday. So now she has decided this is the fault of the food and that she wants to move out and get her own apartment. (My mother has not had a volunteer bowel movement as long as I have known her -- she has ruined her body with enemas and laxatives and her intestines wouldn't know fiber if they met it in the street, so this is NOT a new problem) So Ed told her that it wasn't going to be possible for her to get her own apartment -- he tried to use the financial reasons so he wouldn't have to confront her with her dementia, which she does NOT want to hear about. Daddy made sure to move them into assisted living before he passed away so that she would be in her forever home when he was gone and wouldn't have the upset of moving when he wasn't there to help soothe things. She doesn't know how to use a stove anymore and was not feeding them when they had their own apartment. She wasn't taking her medicine. She was not able to take out her own garbage, or read her own mail, and she heard voices coming through the walls from the other apartments and was quite certain that the Mormons were talking about her (they live in Twin Falls, ID). So there are many many reasons why she will not be living on her own.

But when Ed tried to explain to her that she would not be able to be on her own, she got mad and hung up on him. This is what she does. So he called her back and said that if she was going to hang up every time he said something she didn't like, he was not going to pick up his phone. So she called and called and called and he didn't pick up for the rest of the evening. In the meantime, she called my middle brother and started in on him -- he told her pretty much what Ed had said, so she slammed the phone down on him, as well. Sigh.

She will call Ed in a week or so and leave an apology message on his voicemail. But in the interim, I feel sympathy for the staff at the residence where she lives. They are lovely people, it's a nice safe clean place with wonderful caring staff and actually a very good kitchen, from what I have experienced. Hopefully they will be able to redirect her somewhat. This is just part and parcel of the downward spiral of her dementia. She has never been a sweet person, and this is not bringing out anything new in her. I am very glad that she has not called me.

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

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jan 18 2017 :  6:25:23 PM  Show Profile
Marilyn! You didn't say - How was your getaway??? Welcome home! :)

Oh my, that is not an easy situation at all. I had a friend years ago who had serious trouble passing food. Her doctor told her to take a tablespoon of olive oil a day to help things "move along," and it really worked for her! Do you think it might be something that could help your Mom? Maybe it would help to ask the people who care for her. I don't know if it has to be taken in one big dose or whether it can be mixed into one's food at mealtime, but it really might help, if they will let her try.

It sure does take a special person to care for dementia patients. I am so thankful that your Mom is in such a good place. Even though it must be hard to know she is probably being difficult for them, at least you know that they will treat her with patience and lovingkindness. Such a blessing to have that peace of mind about that!

We're going to see my husband's neurologist tomorrow, but this time for his headaches. She does the botox injections in addition to dealing with the dementia, so we're considering just seeing her for that instead of having two different doctors. We shall see.

The endocrinologst wants him off of the one medication that is making his prolactin so high. He sent a letter to his psychiatrist, who said he would defer to the endocrinologist's recommendation. But the nurse from his office called yesterday and said that the doctor is hard pressed to find a substitute for this medication that will work for him. Since they are getting the psychiatric results they desire, and since my husband has had so many adverse reactions to so many other medications they have tried, he is thinking he might want to keep him on it, anyway. I aired my concerns, so the nurse asked if we could just wait to see the doctor on our next scheduled appointment and have a heart to heart with him about it then. Of course, it's only a couple of weeks away, so I said yes. In the meantime, they're sending a script for him to get more blood work to see if his levels are increasing. But I am just so frustrated. The side effects of the elevated prolactin are really doing a number on my husband. There just HAS to be another medication, or a better way!

Another week of phone calls and appointments. Yee hah! Actually, I'm just really thankful to have good doctors... No real complaints here. If anyone is going to do their best by him, it's this group of doctors! Can't ask for more than that! :)

Hugs -

Nini

Farmgirl Sister #1974

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


Edited by - Ninibini on Jan 18 2017 6:26:19 PM
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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Jan 19 2017 :  09:20:56 AM  Show Profile
Nini -- We leave Saturday for our week of heaven on earth in the islands. I have some issues with what they call "anticipation anxiety," so I try really hard not to look forward to things too much, because that's just as upsetting as dreading them. But we are close enough to departure now that I am allowing myself the luxury of lying in bed before sleep at night, thinking about the beautiful blue skies and the soft waves and the warmth of that tropical sun! We will be returning to the cottage we stayed in year-before-last, and it was so comfortable and pleasant -- I am so glad to be going back to such a nice place and the fact that it is familiar makes it even better for me. I love the way my skin feels when I am in the tropics, too -- everything feels all plumped up and there's no static shock every time I touch an appliance. Silly stuff, but part of what I enjoy about the warmer climes.

I love the idea of olive oil. I had been thinking of sending her a little "care package" and including some Metamucil wafers (so she wouldn't have to mix the powder with juice) and maybe some of those nice individually wrapped prunes. I was also going to put in a nice package of Oreos, because they have always helped her (oddly enough, Nabisco never features that as an endorsement in their commercials!!!).

Sounds like you are getting the care you want for your husband, and it's a good thing he has you to advocate for him. It is truly a family illness. I know once they start with the medications, everything depends on something else and each little change can have consequences that were never thought of. That's another good reason for Mother not to be on her own -- she is getting her medications as prescribed and on time!

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

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Jan 20 2017 :  07:02:26 AM  Show Profile
I called my mother last night on my way home from work (Dude was driving -- not to worry!). She had stopped to work on the jigsaw puzzle in the common room as she was walking through. She likes the jigsaw and they always have one underway on a table right on the way to her room. I am glad she still enjoys them.

I was wondering what kind of mood she would be in, and she sounded kind of subdued. She mentioned that she and my brother had had some "words" and that he thought he was "the KING." I tried to joke her out of it by saying that he was the oldest and always felt like he was the boss. She got very haughty and said "Well, he thinks he is the king of Mother!" I didn't respond and she lowered her voice and said "But I knew it would be like this, and I guess this is the way it has got to be." It was kind of sad, but she's absolutely right and I am glad that she knows that. I said yes, that Daddy would be glad that she was in a nice clean safe place where there were people to help her with things, since he wasn't able to anymore.

Sometimes I feel sad for her, but honestly, she has made her life and we have all tried to help her in the past and she insisted on doing exactly as she pleased. I am trying to let her serve as a reminder to always try to be positive, always smile at people, always learn new things and have new experiences, and NOT be jealous and petty. Years and years ago, my ex and I offered my folks long-term care insurance at a very reduced rate because the insurance company for which he is an agent was offering it as a benefit to agents AND their family members -- new product roll-out and it was a very good deal. I bought my policy when I was not yet 40, so my rate is LOW. My folks were pretty recently retired and we talked to them about it --- trying to get them to think about what it would be like down the road when they were old and infirm and needed some help. Wouldn't they like to be able to have some choices about their care? Maybe stay in their own home? But my folks were grasshoppers as opposed to ants, and they enjoyed the heck out of a very long retirement. They were snowbirds between Washington State and Arizona, then they bought a place in AZ and lived down there. My dad played in a dance band and my mother was the "girl singer." They had friends and traveled in their RV and had a great time. But they just simply refused to think about their end-times, and it has come back to bite them.

That's another thing I try very hard to keep an eye on. Making sure that I have made arrangements for the inevitable end of things. I certainly hope that I get hit by a bus (while dancing in the rain in the middle of the street in Madrid with a 20-year-old named Raul!), or lie down for a nap after lunch and just don't wake up. But ---- I keep paying those long-term-care premiums so that if I need help when I am an extremely old lady, I will have a few more options.

In much happier news, I laid out all my clothes for tomorrow's trip -- lots of swimsuits, and not a lot of everything else. One pair of flip-flops and the sneakers I will be wearing on the plane. I will quite happily leave my parka in the car and when we land in St Thomas I will shove my sweatshirt in my backpack and that will be the end of that! It will be so nice to be warm for a whole week.

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

Edited by - Marilyn Hartman Sullivan on Jan 20 2017 07:03:50 AM
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