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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Jan 31 2017 :  07:25:40 AM  Show Profile
Back from a wonderful relaxing and WARM week. We went to bed when the sun went down, got up to see it rise, and played out in it all the hours in between. We hiked, we walked, we swam -- I snorkeled!!! That full-face mask was a wonder. I strapped it on, put my face in the water, and I was a fish! I saw amazing things down there in that white, white sand and I can't wait to snorkel again. If you are ever considering it -- I say "go for it!" I got my Tribord brand full-face mask on Amazon -- best money I spent for vacation.

While I was away, my baby brother had a stroke (at age 52). He lives in Japan and has very good medical care and good friends/coworkers who made sure he got to the hospital -- but only after he laid at home for 5 days too dizzy to walk, because he thought it was a sinus infection!!! Silly guy. Anyway, he is going to be fine, but he has to change his health habits, for sure.

I haven't spoken to Mother since I got back. I have been dreading it, sort of. She does not know about John's stroke, and we don't intend to tell her. What would be the point?

I have a dozen piles on my desk. A week away plus year-end and all that.

I hope winter is not treating you all too badly.

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 31 2017 :  09:31:19 AM  Show Profile
Welcome home, sister! I've been thinking about you! That vacation sounds AWESOME, Marilyn! So happy for you! I have never been able to get the knack of snorkeling. When we were kids, everyone else got it down pat. Me? The forever choker. LOL! Ah, well... It sounds like such an exciting and yet relaxing trip! YAY!!!

I'm so sorry to hear about your brother. Isn't that something that his symptoms made him think something much more common and simple was going on?! I am so thankful it wasn't worse, and that he has such great medical care and support. Thank God he is going to be okay. These kind of things sure are wake up calls! I will pray for him, for his healing and for him to be able to make those necessary changes!

You're right about not saying anything to your Mother. It's better for her emotionally, and it probably saves all of you a lot of stress trying to help her process it. It's hard to keep things from people who normally otherwise should know, but yours is a very loving decision and you are showing her a great kindness in the midst of her own suffering.

Yeah, welcome home, huh? Don't you wish we had a clean slate and a major restart when we come back after much-needed R&R? LOL! We may get to stop our own world for a brief time, but the rest of the world keeps rolling and still counts on us! Yay! I'm still working on our year-end stuff, too. This year came with so many new reporting issues. I've had to make quite a few calls just to make sure I do everything properly! It used to be so much easier than this! LOL!

Winter here has been very mild, although we've had a little snow over the past few days and are expecting a bit more through tomorrow. I keep marveling at the cabbages and kale and herbs still growing out there in my garden. I didn't pull anything up, just to see what happens. I knew the kale would be okay, but I honestly didn't expect the cabbages to thrive - even through freezing cold weather! Unfortunately, though, our antique lilac is suffering from season confusion again. She started budding the other day, and then >wham< came the snow. She doesn't know which way is up! I suppose this means we'll have another year of all green leaves and no blossoms. It's okay, though, she's a beauty at every stage of the game!

I feel very lazy lately. I accomplish all of my daily "must-do's," and then some, but all I really want to do is curl up under a cozy, warm blanket and sleep. I don't get to do that, but I sure want to. Lately everything seems so much harder to do, a strain. I don't feel sad or anything, I just feel exhausted, like I've just ran a marathon or something, and the officials won't let me stop running. Must be winter. I love winter, though, I really do. I think sometimes winter gets a bad wrap. I love the fresh smell of pure, white snow and the sparkle of ice on the branches and hanging from the eaves. So pretty and romantic and magical. I love the silence of winter, too, you know? And I just love when the frozen wonders melt, and you can see the water running over the wet leaves under the icy blanket of remaining snow. I definitely have the Lorelai Gilmore perspective on winter. (Although I'm not too keen driving in it! LOL!) I can even smell the snow coming in the air (rain, too!). We haven't had much of that at all, though. Maybe that's my problem - the season hasn't really changed much yet. Maybe it's just that I'm craving the change. I don't know. I am just so tired, though, and just want to be cozy and peaceful and quiet. No conversation, noTV, no radio, no nothing. Just... silence.

Well, I think I'm going to go do just that - enjoy the peace and quiet. So glad you're back, Marilyn, and that you had such a wonderful getaway! I hope it lives on in your heart, welling up in treasured memories that bring you great joy!

Hugs -

Nini





Farmgirl Sister #1974

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


Edited by - Ninibini on Jan 31 2017 09:33:01 AM
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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Feb 03 2017 :  09:14:16 AM  Show Profile
Spoke to my brother this morning (well, texted, actually) and he is doing very well. He's been in the hospital for a week and they will probably keep him for 2 more days and then he will need to stay home for a couple more before trying to get back to work. He says he is using a cane for a little extra balance, but otherwise is doing fine. Now he plans to go to work on improving his health!

Nini -- My MIL used to call it feeling "loggy" when she felt like that -- pronounced LOW ghee. Not sure if that was something she made up, or if it was an old-timey thing that I had just never heard elsewhere, but I use it from time to time myself. Winter can feel so long!

Today I am not loving my job. Bless Dude's heart, he is very patient when I feel this way, but I would like to kick a hole right through this computer screen and go back to an old paper ledger book. Every single line has to be connected to something else and there are accounts with 2 different numbers assigned to them and the software has so much detail that I really don't NEED!!! I like keeping track of inventory and amortizing the loans and making sure the invoices all get paid, but otherwise I am sick to death of the whole mess. I spent an hour on the phone doing some training yesterday and first thing today I found another great big mess that needs to be cleaned up before I can produce a "good" balance sheet. I hate numbers with a burning passion.

Called Mother yesterday on the way home from work. She was pretty distracted, so we didn't talk long. They were doing some kind of baking activity -- had refrigerated roll dough and were going to be shaping it into something-or-other, and she did NOT want to miss out on whatever it was they were doing. I didn't really have anything new to talk to her about anyway, and I was glad that she sounded happy and was participating in the activities around her, so it was all good. I guess I should go onto facebook and see if they posted any pictures -- the residence is really really good about that.

Maybe I will walk uptown to make our bank deposit. That would get me away from this blasted computer. Or I could knit for a while. I am looking forward to my 3 days off. Sorry to be such a Debbie Downer today. I just take work so seriously and want it all to be perfect, and just when I think I have it ironed out, I find another big stupid wrinkle!

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 - Feb 11 2017 :  9:26:29 PM  Show Profile
Marilyn - I'm sorry it took so long to respond! Are things going a little better now? Sounds like you had a bit of a rough patch after coming home!

Love and hugs -

Nini

Farmgirl Sister #1974

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

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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Feb 14 2017 :  05:44:56 AM  Show Profile
Nini -- Thank you. Of course things are better -- aren't they always? ha ha

My eldest brother lives in Twin Falls near my mother and has her POA and all. Well, she has taken to calling him on Sunday evenings and fussing at him about things. She's lonely (which I do not doubt, since her husband of 67 years is gone), she is bored (which she NEVER would let us get away with saying!), the food is not good and there isn't enough of it (think of how little sense THAT statement makes! ha ha), she wants to move out into her own apartment (which cannot happen for lots of reasons), she wants to move to a different residence facility (which also cannot happen)...the list goes on and on. Poor Ed. He doesn't have much patience for Mother's fussiness and takes it to heart. If he tries to explain to her why things are the way they are, she yells at him and slams down the phone. Then he gets to feeling guilty and it just goes on and on.

Odd thing is, my mother has always been as hateful as she could be to me and the boys never got any of it. I know they thought that I was making up stories about some of the things she would say to me and some of the stunts she would pull. But for whatever reason (maybe because I am so far away), she has changed her tune and now Ed gets all the garbage and she has been very sweet and congenial to me most of the time.

Anyway, to try to take some of the stress off Ed, we have decided to call her more often on the weekends when she seems to need more company. Whenever I would call her on Wednesdays she would be distracted and busy, anyway. So I called her Sunday and she was painting a picture of a cat that she had drawn earlier in the week. She told me grudgingly that she was gaining weight and that the food there WAS actually okay, just not how she would cook it (which I think is a good thing!) and then she described her room to me for the 80th time and launched into a very vivid description of her "toilet" issues from which I tried with little success to distract her. She said they'd served some kind of FOREIGN food called a "free tater," which she didn't want to try. I asked her to describe it -- it was a frittata (sp?). I told her it was really just an omelet, and that's actually foreign food that she likes. "Well, it was good, anyway," she said. When I was there in October, they served a Chicken Enchilada Casserole -- she snurled up her nose and pushed it around on her plate until I told her it was just Chicken and Rice, whereupon she gobbled every last bite of it. Sigh. I don't think the kitchen can win for losing! ha ha ha

How is your dear husband doing and how are YOU doing? I know you are probably too busy to be posting on here all the time, but I think about you so often. Happy Valentine's Day.

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 - Feb 14 2017 :  08:44:49 AM  Show Profile
Your poor brother... I wish I knew how to tell him how to find humor in these things (especially about the food! LOL!), but it's so hard when you're the target of the frustration and anger, as you well know. Does Ed have a support system of his own out there - someone to help him sort through it all when your mom does this? It is soooo hard. All I know is that when you're dealing with this, until you gain your bearings, you really do have a tough time putting everything in perspective. It's like you want to do everything right because if you do, somehow things will be perfect despite your loved one's illness. There is nothing farther from the truth, though. You just have to do everything with as much love as you have, and then let God do the rest. I know how simplistic that sounds, and believe me, I know that sometimes I try to take over where God could be doing some of His best work if I would just get out of His way < ;) >, but it really does make all the difference. The hardest thing to acknowledge is that we can't make it perfect, and we feel pretty guilty when we try and our attempts fail. But the truth is, we do all we do because we love, because we can only imagine what it must be like for the other person, and because we want to make that person feel better. What I am learning with this horrible disease is that the little successes matter a lot - they add up and end up being even greater than the big things we try to do. A hug, a kiss, a treat, a phone call... sometimes just sitting with the person in solitude for a while... those are the things that make the person truly feel better. And if in the process they need to get some stress off of their chests (even in a negative way towards us), then we need to let them do it; but we do not have to take it to heart or take it personally. Is it easy to do that? Absolutely not! But when we do, we feel a whole lot better.

We're having our ups and downs. The doctor increased one of my husband's meds, and he was calmer for a day or two, but then he started getting anxious again. Today he is having such a stressful day of anxiety. Yesterday I had to go have a cardiac PET scan (long story), and he came with me. It took way longer than expected, so he was stuck in the waiting room for five hours rather than the three we were told it would be. He did pretty well, though, and the staff was super nice, checking in on him for me. Today he is paying for it, though. I haven't seen him so unsettled and agitated in such a long time. Up and down, up and down, up and down... Hyper... Slightly manic... Into everything... Creating chaos at every turn... Good gravy. I made him a beautiful Valentine's Day card, but instead of being happy about getting a card, he got upset because he didn't get me anything. I told him I am not expecting anything, that I know he loves me. I said that we should just do something fun today, just the two of us. But he keeps saying he doesn't know what to do, and doesn't express any interest in any of my suggestions. He just says he is so confused and doesn't know what to do with himself. It's just one of those days. I can deal. Valentine's Day is about love, after all. ;)

Happy Valentine's Day to you, too, Marilyn! Are you doing anything special today? You are in my thoughts and prayers, too. I am SO glad and grateful that you're my "sister"! :)

Hugs -

Nini

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Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Feb 16 2017 :  7:33:44 PM  Show Profile
Hi girls!

Marilyn - The PA at the doctor's office recommended Prevagen to help my hubby today. I mentioned what you had shared about it, and that I had even read about the lawsuit, etc. He said that I must be mistaken, and went on to tell me about some incredible success stories he had encountered when his patients started taking it. So I went to the pharmacy today and asked the assistant there about it. He said they can't keep it on the shelves, that a lot of people come in on a monthly basis to buy it, despite how expensive it is. They also had a problem with people stealing it because it had been so expensive and they really wanted it. What was your mother's experience with it? I re-read what you had said - it is all digested in the stomach and never even makes it to the brain... I don't want to grasp at straws, believe me. But how incredibly interesting that the PA and the pharmacy had good things to say... I'm so shocked! Especially in light of this lawsuit! The PA also suggested that I buy a chamomile capsule for my husband to help him relax. He said that chamomile tea is nice, but he needs more than just tea to help relax him. I'm going to clear this with the doctor, of course. I am just in shock, though, about what the PA and pharmacist said about Prevagen.

What are your thoughts, Marilyn? Girls - do ANY of you have any other insight into this?

Thanks!

Hugs -

Nini

Farmgirl Sister #1974

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


Edited by - Ninibini on Feb 16 2017 7:35:19 PM
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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Feb 17 2017 :  06:32:22 AM  Show Profile
Nini -- It was a pharmacist who recommended that my mother take Prevagen in the first place! She was fussing about not wanting to spend the $$ on the prescription from the doctor and he told her pretty much what you are saying. I think the pharmacist on the ground sees people's experiences a lot more up close and personal than the physician does sometimes. Our experience with Mother taking it was that it did diddly-squat for her memory, though. It would have been nice if it had. She would say "Oh I am getting sooooo much back!" and then ask me if my daughter was her daughter or my daughter -- if her brother had passed away (which he had), etc. It was obvious to Daddy and to us that it wasn't helping, but she was so difficult to deal with that he didn't want to make waves. She was so agitated all the time back then!!! She would get really frustrated when she couldn't remember things, and then she would have absolute fits. Now that she is not in charge of her meds and is getting what the doctor has prescribed, she is much more calm and able to concentrate on things. The residence where she lives absolutely does NOT allow their patients to have Prevagen -- they said partly it was because of the lawsuits and also because the doctors don't like it. I think one reason for its success is the advertising, and also that people are buying it because everyone is scared spitless of getting Alzheimer and they take it as a preventive.

My personal take on it is NOT in accordance with AMA guidelines -- I think if you find something that works for you, then that's what you should do. Doctors don't know it all -- durn the luck -- and some of those "old wives" who told their tales were pretty sharp cookies! If it helps your dear husband (and by extension, dear YOU!) then I say go for it.

As far as the chamomile tea goes -- I have always heard that, but can't do it myself. For whatever reason, herbal teas give me the worst sour tummy! I have so much trouble falling asleep at night, but what I have found that really works for me is Alteril (another non-medical over-the-counter herbal). It has valerian, melatonin and L-tryptophan, and it really does help me get sleepy and then stay asleep. (It stinks like old gym socks, however!)

Mother has been enjoying doing artwork a lot lately. I am so glad that she is rediscovering it! She will sit and draw for hours now, and she hasn't done ANYTHING for hours in ages. Her caregivers have noticed it and are really running with it, bless their hearts! They praise her work and make sure they have lots of art projects going. She loves the attention, of course, and said the other day "I am getting to spend so much more time on my artwork now. I am getting to do things I never had time for when you kids were little." So that is a happy thing.

I feel for your husband. It must be so unsettling for him to feel so lost. Blessings on you, dear Sister.



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 - Feb 21 2017 :  06:53:49 AM  Show Profile
I am feeling bad for my brother today. He called me last night because Mother has been calling him repeatedly and shouting and ranting and then hanging up. She still thinks she wants to move out and get her own place, but that just cannot happen. I called her Sunday evening for our regular talk and she absolutely refuses to believe that I was there when Daddy died. She has made up her own version of the events and it is just heartbreaking to think that she really doesn't remember how he passed. It actually doesn't matter, and I have told the boys that if it makes her happy to think up new memories, then that's a good thing, but it is sad to see how she's failing. My youngest brother who lives in Japan says that he is still getting letters from her from time to time, but that they are just rambling nonsense and that's about all. Evidently there's some kind of jealousy thing going on (that's something that she EXCELS at) between her and some other lady at the home over this one man who organizes the jigsaw puzzle table. Sigh. She has mentioned him on several occasions. I know it is quite common for older folks to attach to someone new when they've lost their loved one, but it is very confusing for Mother. We all just feel like we don't know her because she has changed so much, and that's hard --- maybe harder for the boys.

Mother was asking Ed why she still had to stay there. She said they only moved there because Daddy was sick. Ed had to tell her "No, you moved there because Dad wanted you to be somewhere that you would be taken care of after he died." She said "But only for a little while, right?" Sadly, no. She just isn't able to care for herself anymore and if she was on her own, her health would go downhill more rapidly, I am sure. It is so hard to imagine being in her situation, but I can't change it. I asked Ed if it would help for me to visit, and he said no. He said he would love for me to visit them (and so would my SIL,) but Mother wouldn't know the difference anyway.

So I am at my desk and just going to go on with life. Nothing I can do for her now. I feel bad for my brother, though, as he takes her abuse so to heart.

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

5800 Posts

Sara
Paris TX
USA
5800 Posts

Posted - Feb 21 2017 :  07:09:07 AM  Show Profile
Marilyn, I have been reading your and Nina's posts and my heart breaks for you both. Praying for peace of mind for you, your brothers, and mother. May the Lord keep you all.

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 - Feb 24 2017 :  06:38:54 AM  Show Profile
Thank you, Sara. Mother called me one night this week, which was a surprise. She had been to the doctor, so I thought she might want to talk about that, but she really just wanted to tell me that she wanted to be sure I got their wedding rings "when the time comes." Then she made some jokes about that time NOT being soon! So she was in good spirits. I imagine the rings had just popped into her head and she wanted to tell me while she was thinking of it. She has made a real devil of my sister in law in her head, and she ranted for a while about her trying to take the rings -- pure poppycock, but it was important for her to tell me. I posted about the phone call in my siblings group. We were having a little chuckle because their wedding rings are not big spectacular inheritance-type jewelry. My middle brother said "Hey! I wanted them." I told him that he got the chicken gizzards when we were growing up, so I get the rings! The conversation just got sillier from there. We have to laugh together.

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 - Mar 01 2017 :  12:42:10 PM  Show Profile
Thank you, Sara. God bless you. And may the Lord keep you and yours, as well!

Thank you for the information and insight, Marilyn. I think we will wait and speak to the psychiatrist before I try anything new. Better safe than sorry, right?

This has to be so hard on your brother - on all of you. Being there right in the thick of it, or dealing with it from a distance, there are so many things that pull at our heartstrings. I love that you find times to find humor in the situation at times! Grandpa always said, "Laughter is the best medicine!"

All three of us have been battling bronchitis and sinus infections for almost three weeks now. I had a couple of days where I was absolutely down for the count, spending most of my time sleeping. The cool thing is that on those two days, my husband tried extra hard to do well. He put dishes away, he wiped off the counters. It was really great. He had a couple of moments of real clarity, too, when he started speaking and laughing as if he had never been sick! It was absolutely amazing. Truly wonderful. I just wish I had been healthy to really enjoy that time with him! Those moments didn't last long, but it was like a glimpse of spring in the dead of winter, you know? "Life's little blessings" sure don't seem so little in the grand scheme of things! I am very grateful!

It really amazes me how sometimes a person with dementia can be seemingly fine one minute, and then be totally the opposite the next. It's almost as if the mind is shorting out or something. I just wish there were away to grasp the lucid moment and make it last forever. I hate that I cannot fix this.

It's really odd, because since all of this happened, my husband has gone from gray to white white - like fresh fallen snow. He has let his hair grow back (was bald-shaven for years), and his beard is really full, white and curly. We're going to have to start going to a barber soon, though, because he is having difficulty keeping up with it, and he gets very upset if I offer to help. He looks quite beautiful, though, to be honest; I tell him that all the time. But when we're out, people think he's my father because he looks so much older now. It's understandable, because sometimes he just looks lost or stares and shuffles his feet as we go along. I worry whenever they comment because I don't want his feelings to be hurt, but he seems to take it all in stride. I'm not sure he really even understands why they say it. That's a good thing, I suppose, though, right?

A friend took him for breakfast a couple of weekends ago. I asked him the other day how my husband did. He said he noticed that he was overwhelmed by the menu, like I had mentioned. He said once he himself ordered, my husband just passed the menu to the waitress and said, "I'll have the same," as if thinking about it was too hard. I totally get that. Everything seems hard for him. My foster daughter suggested that now I need to change my questions into statements. Instead of asking him, "What would you like to do today?" Say instead, "Let's go feed the ducks today." Stuff like that. It's hard because I don't want to treat him like a child. I want to give him independence and to allow him to make choices. I don't want to dictate his existence, if that makes sense; I want him to do things that interest him. But I have to remember that when he says, "I don't know where to go," or, "I don't know what I want to do," or, "Whatever you want is fine," that he really means it. He isn't being difficult; it's not that he isn't trying. Things just aren't connecting. Most days, he is just happy going for a ride in the car and watching the scenery. It's surreal to me. He is losing his memory of having been places, of experiences, etc., and it doesn't even seem to bother him. He doesn't even like talking about things he has just experienced. He is simply happy riding down the road and looking out the window, or watching re-runs on television. I guess it's that his experiences are in the moment, in the now. I want to recapture his interest in things, to give him more fullness of life, but I don't know how. Perhaps it's just that this IS the fullness of life for him now. Such difficult waters to navigate. SUCH difficult waters to navigate.

I am woman. Hear me roar: "Meeeeoooooowwwww...."

Hugs -

Nini


Farmgirl Sister #1974

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

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Marilyn Hartman Sullivan
True Blue Farmgirl

1138 Posts

Marilyn
Oxford PA
USA
1138 Posts

Posted - Mar 02 2017 :  06:45:38 AM  Show Profile
Nice Kitty, Nice Kitty! I think it is probably a great positive that you are caring for your Dear Husband, as you seem to be so clued in to what's going on with him, since you know him best and love him the most. I know it's got to be hard, hard, hard, but it sounds like you are doing everything you can. I really liked the point about not asking questions, but giving ideas instead.

Mother called last night. She had some messages on her phone and didn't know who had called, so she was calling everyone to see if it had been us. The residence had done a Mardi Gras party and Mother's picture was quite prominently posted on their facebook page, because she'd made herself a very wild hat to wear. Everyone in the family saw it, so the calls were probably from the granddaughters. At any rate, we had a little time to talk before my potato was ready to come out of the oven. She started out okay -- telling me how she had made the hat and all that. Then she started in on her litany of complaints. The food is no good and there's not enough of it (don't even try to work that logic out), there's nobody there in charge except the "little girls" who work there, the mail doesn't get picked up as quickly as she thinks it should, she can't get my brother Ed on the phone (well, I know why that is), and on and on. She keeps banging on about moving to a different place -- she says she knows there are lots of other places around there and they are "better" than this one. "And if I get there and it's no better, then at least we'll know." Sigh. She simply doesn't understand that it's not a matter of just driving across town and going to bed in a different room. There would be lots of expenses and so much new paperwork and she is in the very nicest place they looked at that was in their budget. She and Daddy visited a dozen places before they settled on this one, and it is very nice. The staff is wonderful and caring. I have eaten the food there, and while it is not the Ritz, it is good and nutritious and the staff does a nice job of presenting it and making it pleasant.

We have to face it -- my mother has never been happy, and that has been her life choice. My dad tried for 67 years to make her happy and keep a lid on her. She always thought that moving somewhere "else" would be better, but it never was, because it has never been her choice to be a happy person. Now that Daddy is gone, there is nobody who is willing to play her game and I think it is very frustrating for her.

My main concern at this point is for my brother. He has health issues of his own, and this constant worry and guilt does NOT help. I may have mentioned this before, but before he died, Ed had told Daddy that he was worried that Mother would want to move out after he was gone and wanted to know what Daddy wanted him to do. Daddy told him to just box up the checkbook and all the papers and take them to her and tell her she's on her own. He knew how hard it was to deal with her.

So now I don't know what, if anything, I should do. I am so tempted to write her a letter, but I don't know if she would understand what I'm getting at, and it might make her angry, but then again, she probably wouldn't remember it for very long. I have thought about writing to her doctor, but I'm not sure he would have any solutions. I have contacted the staff at the residence, and they are very much aware of her complaints (I am sure of THAT!), and are used to handling this kind of thing. Maybe if I do nothing, then some time will pass and she will stop nagging at Ed, but in the meantime he is still grieving the loss of our father and dealing with his own medical issues and Mother is making him miserable to the point where he just refuses to talk to her when she calls.

Adulting sucks sometimes! ha

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 - Mar 07 2017 :  11:04:11 AM  Show Profile
Well, I wrote a letter to my mother. I reminded her that she and Daddy had chosen their home after visiting half a dozen different places and that they had chosen it TOGETHER. I told her that we were ALL still grieving for Daddy and that we needed, therefore, to be gentle with one another. I told her that flying off the handle and slamming the phone down on Ed was not helping her situation and it was not helping him, either.

I told her that we all find ourselves in situations that we don't particularly care for from time to time. At those times, we can throw fits and yell and scream, and at the end of the day, not only has our situation not changed, but WE are still unhappy and we have made everyone around us unhappy. We can, on the other hand, choose to do things for other people, pray for a happy heart, and sing a cheerful song as we go about our day. At the end of THOSE days, we find ourselves more content, we see those around us are smiling, and we find that we aren't really as unhappy as we thought we were. I quoted Abraham Lincoln -- that most men are about as happy as they make up their minds to be.

I don't know when she will get the letter, or what her response will be.

In the meantime, she threw a little tantrum and ended up in the hospital overnight! She was mad because my brother wouldn't come move her and he stopped answering his phone after 6:00 p.m. So she got herself into a tizzy of fury. The nurse at her residence tried to get her to take an anti-anxiety pill, but she refused to do so (actually SPIT at the nurse!!!). She kept spiraling up and up and ended up hyperventilating and so they sent for the ambulance. They got her to the hospital and could find nothing organic particularly, and gave her Xanax and got her calmed down and her breathing normalized. My brother had a chance to speak to their doctor about some of the issues they had been having. They agreed that they didn't want to keep her sedated all the time, but the doctor said he was going to keep her in overnight just to make a point with her. Of course as soon as she got to the hospital she wanted to go back home, but she found out she was stuck! ha!

I spoke to her Sunday evening and she said she had no idea why she had to go to the hospital. Sigh.

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 - Mar 10 2017 :  7:02:36 PM  Show Profile
Oh dear sisters. Do you remember me mentioning my friend in Wisconsin married to the gentleman who had Alzheimer? She was about 25 years younger than him, and they had been married for maybe 15 years. Well, I just got an e-mail letting me know that SHE had passed away. I am beyond stunned and so sad. I had lost track of her for a bit after I dumped my Facebook account in the aftermath of my father's passing and the horrible election hatefulness. I don't know exactly what happened, but from the little bit of info on her Facebook page, I could see that she had been in the hospital at the Mayo Clinic and had opted to have them remove her breathing tube and take her off dialysis, so I guess she must have been very, very ill. I do not know what her poor husband will do without her, but I guess his memory loss may be a blessing for him now. I am just too sad.

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 - Mar 21 2017 :  06:13:32 AM  Show Profile
Nini -- Hope you are out from under the snow -- I had a walk uptown this morning and only had to reroute myself a couple of times to avoid big piles of the dirty stuff.

How is your dear husband doing, and how are YOU doing?

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 - May 26 2017 :  9:35:12 PM  Show Profile
Hi Everyone! Hi Marilyn!

Marilyn - Please forgive me for being MIA for so long. I am sorry I haven't been here for you. I am so, so sorry for the loss of your friend... Oh my gosh, how absolutely heartbreaking... Did you ever find out about what happened with her husband after her passing? I can't even imagine what that must have been like for her family. And how did your mother respond to the letter you sent her? Please know I did receive your email, I just haven't had time to respond yet. But I will soon, I promise! Thank you so much for reaching out to me! That meant so much to me, and I've really missed you! (ALL of you!) Thankfully there's no more snow, and the garden is in. I was going to forego it this year for the sake of time, but I'm so glad I changed my mind. At least something in the midst of all this craziness is normal and familiar! LOL! I still have a ripe pumpkin stored from last fall - can you believe it? I really need to can or dehydrate it soon, because before you know it, I'll have all new ones coming in! LOL!

There really is so much to share, but I really need more time to sit down and think through what I want to say. I hope you understand. Right now, I'm just so, so tired and overwhelmed with all of this. It's like a steady stream of changes and upheavals - things are so different from day to day. This is the hardest thing...I don't think anything they tell you can adequately prepare you for it, you know? But I'm farmgirl strong, and I can do all things through Christ Who strengthens me. We ALL are, right? :)

I'll write again as soon as possible. Thanks so much for being patient and understanding with me dropping in and out like I have. I'll try to be a little more in touch than out, I promise!

Hugs and love,

Nini


Farmgirl Sister #1974

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

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Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - Jan 23 2020 :  9:53:18 PM  Show Profile
Hello girls - How is everyone doing?

I just want to say that these past couple of years have been so much harder than I ever thought, and yet so rewarding at the same time. I have learned a LOT. What has greatly been impressed upon me is just how similar the experiences of ALL caregivers are. Sure, each illness has it's own trials, but what a caregiver experiences is pretty much the same across the board. So, tonight I started a new strain so that every farmgirl caring for loved ones with any type of illness can join in the conversation and support each other: http://www.maryjanesfarm.org/snitz/topic.asp?TOPIC_ID=90015 Please join us over there and start sharing. We CAN do this - together!

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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darlenelovesart
True Blue Farmgirl

6331 Posts

darlene
Loleta California
USA
6331 Posts

Posted - May 05 2021 :  3:39:25 PM  Show Profile
Hi Nini and everyone, I hope you are all doing well!

I just wanted to leave an update on my knee situation, I have been waiting to try and get knee surgery but dental work has delayed everything. I called my Orthopedist today and talked to The Physician's Assistant. He is going to set up me to have the first stage of the revision on my knee to put in a rod with antibiotic which will be in for a couple of months then I have dental work done before the 2 stage of the revision with the knee parts so I will be able to bend my knee before the end of the year. Yay! That is how things stand at the moment. Here is an update in another direction.  I just talked to Chris Ludlow the PA-C for my Orthopedist, Dr Brubker and things are going to move into another direction. Before I get my teeth done he wants me to go in for the first part of the Revision stage One. So I don't have to do the teeth until after this stage is done.  This stage is putting in a bar from Femur to Tibia with a cement antibiotic in the knee. It is a solid bar which will straighten and heal the bone and strengthen it. After it heals then I need to get the dental done with antibiotics before the Knee prosthesis is put in the knee. So I might be having this done in the next few weeks.  I might have my knee parts by November or Christmas.That is all for now. I will let you know when I hear more.
Thanks for your prayers. and you all take care too!
Love
Darlene

Trust in your faith, not your emotions, when it comes to making life’s decisions.
I have learned that to have a good friend is the purest of all God's gifts, for it is a love that has no exchange of payment.
by Frances Farmer
Just. follow God unquestionably Because you love Him so, for if you trust His judgment there is nothing you need to know.

I TRUST IN YOU JESUS

#4943 - March 2013
FGOTM June 2013
FGOTY 2016

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Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - May 16 2021 :  9:40:39 PM  Show Profile
Oh, Darlene - I am so glad you emailed me. I had no idea about all you've been going through. I'm concerned, but I know that God loves you more than we can even imagine, and He will be with you, and have His hands guiding the doctors' all the way. God bless you, sister! Its so hard when things like this happen and we are so far apart. I meant what I said, if I lived closer, I'd be right there with you!

Hugs and love -

Nini

Farmgirl Sister #1974

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

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Ninibini
True Blue Farmgirl

7575 Posts

Nini
Pennsylvania
USA
7575 Posts

Posted - May 28 2021 :  10:25:18 AM  Show Profile
Hi girls -

Just wanted to post about something that is working pretty well for us that I think might help some of you or your loved ones.

When I went to support group, I always heard other caregivers complaining about how hard and stressful it was to get their loved one to wake up in the morning and cooperate doing pretty much anything that needed to be done. Another issue was just that they had very little to no spare time to do anything for themselves; and that when their loved ones were up, they couldn't get anything done because they were constantly interrupted. And sundowner's - wow... such a nightmare! I sure have given that a lot of thought over these past few years. Especially as I personally was struggling with similar issues. Hardest of all was that I was staying up til 4 in the morning most nights just to get things accomplished. It was killing me. I started thinking: Hey, I'm blessed enough to be home with him every day. He has difficulty sleeping (NOTHING works), and sleep is so vitally important for his brain. Why am I trying to make him conform to my schedule, when he has real needs of his own? He is unwell - I am the flexible one! This concept was also driven home one day when I was discussing with his cousin - a retired nurse and nursing home administrator -some communication issues my hubby and I were having. She made the comment that one of the craziest things she always saw families do was to try to pull dementia patients into their non-dementia world. She said I needed to enter his world if I wanted to create harmony in our lives. In my heart, I knew she was right. So.. I did.

One of the biggest problems my husband faced was sleep. I quickly learned how important it really is. My hubby goes to bed at the same time every night, but he tosses and turns for hours. He won't do any of the things his doctor recommends to help with this (for example, get up and watch relaxation programs or listen to soft music until he feels drowsy, or read - which he really has difficulty with, anyway - or try warm milk or anything). The only melatonin that helps is the slow-release type; but even then it's not consistently helpful. Even medications that used to help simply don't anymore. I decided that since sleep is critical to his overall and especially mental health, that I would let him sleep in as long as he needed every day. It helped. A lot. On one hand, it really through a wrench in my schedule as far as when I am able to leave the house to take him and the dog to the park for their daily walk, as well as scheduling appointments and running small errands. Waiting for him to arise sometimes can be grueling for me at times. But, on the other hand, it also opened up a nice little chunk of time in the morning when I was able to get things done around the house UNINTERRUPTED. Phone calls, chores, paying bills, meal prep, gardening, you name it. I am able to get a lot done before he wakes up, which is usually anywhere from 11:00ish - 1:00 PM. The upside for him is that when he does get up, he is more rested and clearer minded than he would be otherwise. Once he is up, we start HIS routine... Breakfast, a 1 - 2 mile walk around the lake at the park (His choice as to how long we walk. Exercise is imperative for both of us, but I don't feel the need to push him to do more. He likes it, so I'm good with whatever he wants to do. Again: we are now on HIS time.), and maybe a quick run to the farm or market or pharmacy, then home. Once home, he watches t.v. (which is extremely comforting and familiar to him) while I make dinner. After dinner, we watch a favorite t.v. program or a movie while I do laundry. Then he heads up to bed. This has been working so well for both of us that I've even been able to get more hours of sleep every night! Sometimes I even make it to bed before midnight!

I've received some grief from people who thin that I let him sleep too much. Not the case at all. If he is in bed tossing and turning, he is not sleeping, anyway. And sleep, as I said, is so critical to his health and well-being. So, I let him sleep. They also say that he needs to be awake while the rest of the world is. Really? Why? We are able to schedule his appointments around his sleep schedule. And he isn't interrupting anyone else's life rhythm or "time" other than mine. And he is doing really well like this. Why should I change something that is working for both of us?

Another family member suggested that "my problem" is that we spend too much time together - that if I "let" him go spend time with his house-bound sibling, he would have something to look forward to instead of staring at me all day, and then maybe he would sleep better. I mean, WHAT?! My response was that he is my best friend in the whole world. I have been with him since I was nineteen years old, we have always done everything together, we enjoy each other's company and I am blessed to have the luxury of being with him and caring for him while he goes through this. To me, time with him is precious and I don't need to be separated from him. I want to cherish every minute with him! Further, my husband has a lot of trouble with new experiences, and with any change or interruption to his daily routine. If he knows that it's coming, he stews about it for days, sleeps less, gets snappy and more contrary than usual. If I don't tell him, he gets extremely upset when the routine is interrupted and is extremely agitated. Even a "pop in" visit from a good friend can agitate him tremendously (although this doesn't happen very often). And either way, it takes him DAYS afterward to process what just happened - often being miserably cranky, unable to sleep, etc. I can't explain it, but it happens. And when it does, it's hard. I do offer him the opportunity to go new places and see people/family all the time, but he says he doesn't want to. He is happy going to the park and staying home. Plus for him, routine is everything. I believe the ultimate goal is keeping his life peaceful, and making sure he is happy and feels fulfilled, and that is what I am ensuring happens. And the doctors support how I'm handling this because my husband is doing well, all things considered. This relative didn't know what to say when I was done responding. It's so hard because I'm sure that somehow what was said was meant to be caring and helpful. But, it actually hurt a little. And as the old Indian adage says, you have to walk a mile in a man's shoes...

I guess my point is, forget all the advice and pressure from well meaning loved ones. You really have to do like our cousin said: enter into your loved one's world. Figure out what works, figure out what doesn't, then work around it yourself. It's okay to set your own life's rhythm - you don't have to follow the norm. Do I get EVERYTHING done in a day? No! But I'm one of those people who could find stuff to fill every minute of their waking time, anyway - "everything" NEVER gets done! LOL!. Are all my personal dreams and goals being fulfilled? No! But neither are his. As I long to have my front yard landscaped and dream of a vacation at a cottage on the beach on Cape Cod, he has dreams he can't see fulfilled, either. The most heartbreaking thing he ever told me was early on when this all started happening to him. He was struggling with having worked his whole life (starting at age 9), thinking he would have an amazing retirement, and everything suddenly was for naught. He said he always thought he would retire, buy a boat and travel the rivers to see the country. He never shared that with me before. I felt so sad that I never knew that, and that I couldn't make that happen for him. Yeah... it's kinda ... well, you know... But that's life, isn't it? We have to roll with it and make it good, to SEE the good. "Keep our faces to the sun" (Or, in my case, The Son!) and all that.

I'm actually okay with our life right now. Some days I feel like my personal life is passing me by and wonder what will happen to me. But I can't focus on that. It will be another chapter in the book of my life, and I will walk through the pages when it's time. It's much better to appreciate and revel in the GOOD stuff we have NOW, and to be thankful to God for all of it. Right now, His blessings are: We are together. We LIKE being together. We are otherwise healthy. We both are FINALLY getting some sleep. Our stress is so much less by "going with his flow." And he is, for all intents and purposes, "happy." Other than a good pair of comfortable shoes and an occasional hot fudge sundae (lol), what more can we ask for, really? We are truly blessed!

(As an aside, I'm hoping that this really helps if he ever begins to suffer with sundowner's - although I wonder if some of what he experiences is somewhat sundowner's related. Maybe if I learn to be more flexible with what his body's rhythm is doing, he won't suffer so much if and when it happens - me, neither! I have the time - I can be flexible for him!)

I hope this helps some of you a bit. I'd love to hear your perspective and find out what's working best for all of you! Keep the faith! Blessings do abound! Sometimes, you just have to look for them!

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 May 28 2021 10:30:27 AM
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