Hi Ladies,

I've been doing some retrospective thinking here ..... bit of internal brainstorming kinda thing y'know ....... arguments and conversations with myself .............. why?

Cause I'm still guilty ........ yeah .. I know ....... No guilt, but that's easier said than done. So I thought I would write things down and see if there is some perspective in things. Why did I find it so hard? What went wrong? Why, why why???

Why did I perservere in trying to make AD MIL see logic?

Because I had known her as 'normal' for ever so long, and believed that in our closeness, I could make her see reason. I really, truly believed that I could break through the AD Fog and reach her. I continually set myself up for disappointment, and therefore I feel failure because I didn't succeed. I had no chance of succeeding, there is no logic with AD, but I still had to do it my way and in doing so, succeeded in creating a living he11 for myself and my family.

Why did I have trouble asking for help?

Because at the start, it wasn't so bad. Things escalated so darn fast I didnt' know what hit us, and kept trying to create 'not so bad'. Each level of horror, I would treat with "it's not so bad, it could be worse" and when worse happened, I would return with 'it's not so bad, it could be worse', until one day I woke up and went hysterical and didn't cope at all. I didn't cope with my kids, my husband, daily living activites, and when I FINALLY asked (screamed) for help, it wasn't forthcoming because then THEY said "it's not so bad, it could be worse" ....... (that's where the brick wall thing comes in)

Why me?

Because I'm the chronic carer. I like to help. I like to make a difference. At the same time, I get walked over and abused by those who judge me. But yet, I still want to care ..... I knew things wouldn't get any better, I KNOW AD will NOT ever reverse itself, but still, I continued to care ........

Guilt

I failed. It's that simple. It took me a long time to register that fact.

BUT

I succeeded! I managed to keep two people I loved dearly at home much longer than they could have without any help. I managed to keep one of them alive for at least an extra year ..... and now one is safe and sound (finally) ....... in my failure, was my success.

Ok .. that's my brow-beating brainstorming session ........more later I daresay

Hugs
Sally

O HO!

That's where all the bruises on my head came from! (just kidding!)

I did exactly the same thing as you . bang, bang, bang, banng!

What are you doing? Just trying to explain to Mom that she DID take $200 to the Senior Center and it never came back.

Bang bang bang bang .. what are you doing? Just explaining to Mom that the pile of shite on the bathroom floor MUST be hers because no one else here could have done it.

Crash, crash, crash .. what is that noise? Just Martha trying to reason with the unreasonable ... Just explaining once again that she must take the pills for that day only ....

OUCH...The desription fits me to a T.

Gawrsch. Welcome to the club. Are we all nuts, or what???

Putting it a slightly different way: why doesn't the family doctor, the pastor, the friend and neighbor and relative jump in and say X has Dementia - this is what you need to do - and then HELP you to do it???? Why are there no funds for nice comfortable caring nursing homes for people with just a few dollars too many to get Mediciad but nowhere near the money to pay their own way? Why are daughters and DILs expected to sacrifice their own lives and sanity and made to feel bad if they can't do it forever ... not a few months or a few years but FOREVER? Why is it that the AD patient lives to be old and the caregiver dies young?

WOW I am up way too late tonight, gotta get some sleep! I am depressing myself!

Love to all Carers,

Martha

Hi Ladies,

Can I join the club? I have traveled the same road with both my parents. They have been gone for several years now. I wish I had found this board sooner! I am sorry to say, I still don't have any great wisdom to impart. I still struggle with the should'a, would'a could ofs. Fact is, there is no happy ending in AD land.

We all have learned a lot in our experiences. I had no idea in the beginning what an awful disease this was. Yes, I had heard, seen and read about it but It is one thing to hear about and another thing to live it 24/7. You are physically and mentally exhausted. Who can do their best under these circumstances? I compare it to a boxing match, you keep going down for the count and yet somehow keep getting back in the ring until one day you just collapse.

What would have happened if you were not there in this crisis? Who would have done it? Would they not have been as exhausted and overwhelmed as you were and made similar mistakes? I don't know about you but people were not knocking my door down begging to take over. At least we stepped up to the plate and did our best!

My oh my, I just realized how I have been rambling. :rolleyes: Do you think we could get a group rate from a good shrink? LOL :)


Hugs to all the care givers out there and NO GUILT

First off...WELCOME, Me 2! Glad to have you here...even though your parents have been gone for a few years, perhaps you can contribute some of your experiences with us who are just beginning down this awful road in the future!

So that's why my head hurts all the time??! I *HAVE* literally banged my head against the wall, or desk in frustration with my mom. And dang it hurts when I do that!

It's so frustrating to try to logically reason with someone with this disease. Once simple explanations now confuse her...like last night....she counted her nitro pills in one of her bottles at least 5 times in the span of 5 minutes, and was starting to get really frustrated at the thought of putting her new script of Nitro in another bottle to go into her purse for 'safe keeping'.

Logic and common sense are quickly going out the window...and it's hard to come to terms with that, and to learn new ways of dealing with this new person.

We all must be ultra strong people!

Welcome Me2! My Mom is gone, too, but I come to share what I learned and to show you can survive.

Kim, you're dealing with a tall 3 year old. No logic. No good judgement. No complete comprehension, understanding, or even a frame of reference. Once you see your mother in that light, it's lots easier to adjust your expectations about what she can do for herself. If a 3 year old cannot do it or understand it, you mother cannot either. Sad, but true.

My mother was crying one day and I asked her why. She said that she was afraid that her mother didn't know where she was (her mother died in 1967, but that was beside the point). I hugged Mom and told her that it was okay and that I had told her mother where she was and when she'd be home. My mother stopped crying. My answer was not true, not possible, but it was understandable to a 3 year old.

Hang in there! Hugs - Barbara

Yes, this is a long and difficult road we travel with our heavy loads. Thank goodness we have each other to lean on BEFORE we put our heads thru the wall! :)

Sally, I still don't see where you've failed. I remember what you went through trying to convince the others what was happening to MIL. That's where you got the bruised head. Remember? And those knocks from MIL didn't help either.

You didn't fail anyone. You submitted to the disease. That's the only thing you could do to keep yourself and your family from becoming (or staying) vicitms of that same disease. Your MIL, as you once knew her, would have wanted you to do exactly what you did. She would have been very proud of you.

Keep your last paragraph in mind. But never think of yourself as a failure. You can allow submission to dementia, but not failure. There's NO failure in trying!But there IS success. Your FIL lived longer and died knowing that your MIL would be well cared for. Your MIL is safe, warm, cozy and happy. You, your dh and your children are all less stressed and moving on with your lives. You made it, girl! You're a survivor! Those are all your successes. :bouncing:

Love, Barb

PS. PLEASE tell me about warm weather! I'm desperate to hear of leaves on trees and such! What is summer like down under in February? :)

Barb,

All you need do is head West. It's 81 in AZ today! All doors and windows open, nice breeze.

Leaves on trees??? hmmmmmmmm.........Well, there's little red berries on the Palm. Does that count?

teehee!

Hi All,

Sally, you are one of the most selfless people I have every known!!! I think that means, that you care more about other people, than you do yourself!!! You gave your caregiving your all and just about went bonkers doing it!!! I know it gave you ill health and anger and not a normal family life!!!!!

But, the main thing is - you did help your MIL and your FIL, inspite of others who were no help and basically denied everything you said that was true! So, be proud of yourself for the great work that you did and the best life that your inlaws could have had at the time!!! And you know what, your FIL did know how hard you worked in taking care of them! And deep down, your MIL knows that too!!! :>

NO GUILT!!! Cause, you have nothing to be guilty about!!!!! :> You should just be happy that you did what you could for them and you should totally ignore your caregiver freedom!!! Enjoy, your new home and your new town and your family!!!!! :> :> Dr. Wannabe says so!!!!!

Yeah, Sally, tell us about your beaches and sand and water!!!!! Nice and warm and breezy???!!! We must all come to see you and have a little respite!!!!!

Take care everyone. Just enjoy what peace that you can, when you can. I do.

Love, Wannabe

YOk all, you asked what summer is like in Australia, so I'll describe as best I can .. especially for you lot who are freezing ..... but also to help some understand that our AD charges don't 'get it' with the weather sometimes either.

Right now, as I sit at my computer, I look to my left, through my back sliding doors onto our back verandah (patio, porch), I have a banana tree in the back yard, groaning with teeny tiny banana's. Just through that, I can see the river and I can tell it's low tide. The sand is a pale yellow, the water is turquoise the sky is cloudy with white/grey clouds. We'll have a storm this afternoon .. probably a pretty one with lots of lightning. I'm hoping we can go for a swim before that happens! It was 24C last night and around 33C today (I don't know farenheit will have a hunt around)

Now, If I was still looking after my AD charge, she would have long pants on, with pantyhose or sockettes (foot pantyhose) with a long sleeved shirt buttoned to the throat. When we would say "Good grief, it's hot .. take some clothes off" she would look at us as if we were mad and cling to her hot and sticky clothes. She also has a skin condition with lack of pigment and must stay out of a lot of sun, but inside? Then she would turn on the AC and have a wine ..... warm clothes AND AC? Doesn't make sense. Couldn't try to argue .... just tried to keep fluids up with her (and not booze)

Today we went to the markets to get our fresh fruit and vegies for the week. There was NO breeze in town, it was quite stifling. Everything was sticking to me (even my shorts that are now LOOSE on me !! Woo hoo!) sweat was dripping down my face, behind my sunglasses, down my back ... it was MOST uncomfortable ... I love the markets, but today I couldn't wait to leave. We came home and I ripped off my sticky wet clothes and threw on a swimming costume and sarong ........ my 'at home' uniform lately!

At the moment, I can't wait until winter! Winter temperatures are (we've been told) around 12C overnight and 19 - 22C during the day.

That's winter??? I can see me tossing out some jackets and jumpers!

Now .. I guess what's eating me with this guilt thing is that the majority of the family won't speak to me. My four nieces, who I have supported, loved, given a roof over their heads, fed, sobered up and protected have sided against me ..... I am the evil one. It breaks my heart that they believe the ugly stories they've been told, and it grieves me that they have treated me this way so quickly, without giving me cause for rebuttal. It was one of them who hacked into my computer and found my diary and showed her father. They have condemned me .... and I'm really ANGRY that they have dumped me so QUICKLY when all I have given them for 16 years is love and support.

My ex-sister in law, who rang and supported me and told me she understood my problems, has turned against me. Who IS talking to me? The BIL in China, but we never hear from him anyway .........

So this family, that I've given everything to has abandoned me. THAT'S what's eating me I think ..... I know I tried my best, and I'm sorry I wrote a diary (which is basically everything I've written here) and I've been judged and crucified .........

*sigh*

I will cheer up .. I promise.

Hugs
Sally

Having lived overseas I can roughtly translate the C temperatures into F. 33 degrees C is about 90 F. 22 is about 70. 16C is exactly 61 F but none of the other numbers can be reversed like that. 10 C is 50 F. Zero C is 32 F, freezing point,.

Body temperature is 98.6 in F, but 37 C.

Hope this helps!

Sally - those people who are falsely comdemning you are wrong. They only saw that you (they think) 'maligned' their father, brother etc. They did not see what he did to you, how he treated you, how his GF refused to help you. They did not see your anguish, how lost and alone you felt, etc.

Either they will come around and remember how much you did for them in the past, OR they are not worth mourning over.

No one but you, your husband, and your children (5 witnesses on your side!) know what REALLY went on in that house.

Chin up and enjoy your new life. Writing a diary is not wrong. Sneaking a look at it is wrong!

Love,

Martha

Sally,

I feel so sad that you have to endure that from your family. They really don't have a clue! I, too, have a journal that I keep and it's similar to what I write here. Just a way to vent my exasperation without barraging my brothers with each and every issue.

If they don't live with it everyday.......they just don't understand the stress and trauma that we go through. Even my dh makes it fine during the week, (he goes to work each day), but on the weekends, it drives him batty. He'll ask, "does she do this everyday?" Well, YES!

My daughters (who love me dearly) will come for a couple hours and then say, "She's not TOO bad." No, for a couple hours it isn't that bad. But 24/7 of another person's irrationality is devastating!

I think I spend half my time wishing other's could understand. And, Sally, they just don't.

You did the very best you could, you gave them many months of staying-home, and together, that they wouldn't have had without
you.

Enjoy your new home and let them think as they want. They are wrong. If they are that vindictive and blind to your kind and giving nature, you might be better off with them out of your life for now.

You deserve a new life, as stress free as possible. You earned it!

Thank you, Sally. You made me appreciate the cold and snow here.... :D

Martha is right. I know it's hard when someone you love and care about doesn't want to have anything to do with you. It hurts a LOT. But the truth is they will never understand what you and your family went through caring for you FIL and MIL day in and day out.

Continue being the wonderful, loving, caring person that you are. And if they don't come around and start seeing you for the person you are (and not what has been said about you), it's their loss. They are the ones who lose out. The people who matter most to you understand what you went through. They appreciate you. And that's all that really matters.

BTW, your neice should be thankful you didn't have her arrested.

My dad wears sweatshirts in the summertime and shorts around the house in the winter. And then he turns the heat up to what seems boiling point because he's cold! And the rest of us sweat bullets.....

Are you near the ocean and the Great Barrier Reef? I've always dreamed of scuba diving at the Great Barrier Reef. What beauty!

Love, Barb

Sally,

I feel so sad that you have to endure that from your family. They really don't have a clue! I, too, have a journal that I keep and it's similar to what I write here. Just a way to vent my exasperation without barraging my brothers with each and every issue.

If they don't live with it everyday.......they just don't understand the stress and trauma that we go through. Even my dh makes it fine during the week, (he goes to work each day), but on the weekends, it drives him batty. He'll ask, "does she do this everyday?" Well, YES!

My daughters (who love me dearly) will come for a couple hours and then say, "She's not TOO bad." No, for a couple hours it isn't that bad. But 24/7 of another person's irrationality is devastating!


Amen! I will call my brother when mom gets REALLY verbally abusive, just to vent, but he doesn't REALLY understand the full magnitude of what I'm talking about. When he lived here in town, he would come by for maybe an hour or two, and mom will put on a great show. He hears her starting to slip up in their phone conversations, but until one is around it 24/7...they can't POSSIBLY know the anxiety, devastation, and stress that this puts onto the person who IS around it.

I started an online journal to vent my frustrations, and gave the link to a few of my very good friends, and they will give me feedback, and great support. Without it, I think I would have gone totally bonkers before finding this place!

Hi all and especially Barb and Sally,

That is so weird (probably just really normal for AD people)!!! My dad is always wearing plain white t-shirts. So, if it is really cold outside, he has the temp up to 80. He sets temp. in winter, like it should be in summer and vice versa! Like: In winter there house is 80 degrees and should be 70 degrees (or 75 at the most). And in the summer it is 65 or 70, when it should be 75 or 80 !!! I am talking the hot state of Texas and very very humid. So, we try to save on electricity, by not heating or cooling too too much. But, at times, if you just open the windows and turn on the fans, it is like soo muggy!!!

Anyway, off track - my father dresses inappropriately almost all the time. My mom does not look for spots (or just cannot see them), so they wear dirty or stained clothes a lot. My dad does not know the difference and she lets him wear whatever he wants. It is like going around with a vagabond!!! You know, or a hobo. So, my sister and I buy him new white t-shirts and colored t-shirts. But, a lot of the time, he just saves them for later and then forgets to wear them!!!

At Christmas there were 15 of us at their house and they had the heater way up. We were burning up and were dressed for the winter. My dad had on his white t-Shirt. Well, I am the brave one and turned on the air conditioned for about 30 min. and cooled the house down and made my dad put on a red sweater!!! We were so much more comfortable and he looked like Christmas!!!!! :> But, he still likes to be the boss of the temp. control, so, as soon as I leave, he changes it back!!!!! :>

Sorry, I just took off on a tangent!!!!!!!!!! :> :> :>

Take care.

Love, Wannabe

That's no tangent; it is sooo typical for AD patients.

Mom opened the windows wide in winter and closed them in summer ,wore sweat pants when it was 90 degrees outside and short sleeves when it was 40. Once she had a terrible argument with her Aide because she wanted to wear a summer jacket with no lining on a freezing winter day, and another time she left her warm coat at the senior center."I didn't feel cold at all!"

You keep buying Dad white undershirts, and I kept buying Mom white underpants because she kept saying I am running out ... when we moved and I emptied her dressers, there were over 30 brand new pairs. Now she's in diapers so I don't know what became of them . I could use them actually, since I wear her same panty size although I am very much taller ....

Oh the joys of Alzheimer. I never thought 'go and look in the dresser, maybe she isn't really out of them?' since she soiled quite a few. I assumed she had thrown them out.

Once she told me, "I tried my Metro card in the bus and the driver said it was empty." That was odd since I had put money on it just a week or so before, but I dutifully went down to the subway station and added $20. THEN I asked the clerk how much was actually in the card now? he said $60!! After that I used the card and she used quarters! She could have easily lost that card, just like all the money she lost, with so much money on it! I used it up going to and from work ...

Memories, memories ... some look really funny now. But at the time I went home and scolded her ...poor her. All she said was, 'well the bus driver lied to me, he said it was empty.' Yeah, right.

Love,

Martha

There's not a week that doesn't go by that my FIL doesn't say "Look at this, it's sunny outside but it's 32 degrees, I just don't get it" I want to scream, IT's WINTER, it's suppossed to be cold outside! What does the sun shining have to do with anything?? But I don't. He wouldn't get it. C

I guess in his mind, he's seeing the sun. The sun is hot. Therefore the day must be hot.

The thermometer says it's cold.

That doesn't go together!

Welcome to the AD mind .. their logic is NOTHING like ours ..... they are quite justified in their thinking by the way... there is no other logical choice for them!!!

Hot sun = hot day

Just like when young kids see an icky cloud in the sky in the middle of summer and put a jumper (sweater) on ....... icky clouds do not necessarily make cold weather! (Trust me , I know !!! I'm in the topics!! LOL)

Just another story to add to the growing list .

Cheers
Sally