Loving Christmas ? - we hope so

[Hugh Handen]

My first contact with TPs - rather daunting, will I make sense ?
Other discussions I've dipped in to seem suggest nothing to lose, lots to gain

When MIL arrives to stay with us I dread the tension that starts immediately - we don't havbe a cut'n'dried diagnosis, but there's no doubt that her short-term memory function has vanished. Familiar echoes in other TP histories of knowing things are not right, witnessing progressive loss, and confronting denial, for many familiar motives I guess, and all those tread-carefully processes to do with advice, concern, change of control dynamics and GP relatively powerless, though one can't help wishing for so-called definition/diagnosis, as if it would make any practical difference to MIL's predicament or our feelings of great sadness and powerlessness. No chemical remediation currently - would it make any difference, in other words our priority feels like something else, I guess.

MIL has dominated her family's life for so long with her controlling certainty, never a grey area, everything black and white, and now, so ironically [and is tragically just an empty word ?], we find ourselves in a cloud of intense greyness and absence of definition

Specific words of encouragement would be so welcomed - from anyone's experience that this echoes- for the unfamiliar state of our needing to take responsibility in unaccustomed ways for an unpredictable looking future with MIL who, habitually knowing her mind and what is best about absolutely everything, now finds her capacity disintegrating; she sort of knows and is sometimes explicitly frustrated and upset, but fiercely unfamiliar with being helped, loved even, ever, with anything, turns some parts of my heart to stone in self-defence. It would take the keenest edge off my dread and near-certainty of failing to learn and apply sensitive, authentic, practical and altruistic responses in a set of dynamics which are intensely fraught to be reminded that others have been here before and found strategies to survive and strategies to love and provide and accept.

The angry voice is screaming at MIL : there might be more credit in the account to fall back on in 2005/6 if you hadn't squeezed it to dry death over the years [25 of your daughter's marriage with me, and the 20 year life of our children]

So this is an intense dilemma - I know I am not up to the demands that are going to be placed on us, and I know that is not a helpful place to start from, and I guess we will just endure through grace

End for now; if you have been, thank you for listening, and if there are replies or reactions, then I won't have been talking to myself after all.

So grateful for each thought of yours in support - yours for mutual, reciprocal correspondence

HUGH

 

[connie]

Hugh - warmest welcome to TP. So glad you have found us and have posted. Yes it is daunting, but sometimes so rewarding.
Every bodies experience is different, but sometimes so similar, that I am sure you will receive some good support and advice soon.
In the meanwhile carry on reading the posts......all good information. Take care of yourself, Connie

 

[rummy]

Hi Hugh and welcome.
My Mom has AD and it is so difficult. I'm sure my husband could identify alot with you. He is a very patient man and is helping me deal with many issues.
First I will tell you that an early diagnosis is so important because there are medications that can slow down the AD process. Try to get her help as soon as possible. I had many obsticles getting my Mom help, not only was she and my Dad in denial, but the doctor was totally unhelpful. They didn't seek help until the day she forgot who my Dad was and told him to move out. That finally inspired him to take her for furthur testing. The medication helped alot but I know if they had gone two years earlier we would be in a better place now.
My advice to you is to arm yourself with information. The alzheimers organization has alot. I got valuable information reading the book " The Validation Breakthrough" by Naomi Feil. Really helps in knowing how to communicate with the AD person. Another good book is "Elder Rage" a woman's story of dealing with her aggresive AD father. A little hair raising but good to learn from her experiences.
This forum is wonderful, the folks here are so generous with their support and advice. Come here any time you need something or want to share.
Good luck with everything. I know how awful this is for you, all of us here know it too well.
Debbie

 

[Brucie]

Hello Hugh, welcome to TP, I hope and expect it will help you

I know I am not up to the demands that are going to be placed on us

I think you will find, as I did, for the first time, the meaning of what "hidden depths" are.

Had I known what I would be facing and doing the past 15 years, I'd have been sure I wouldn't have made it this far, yet here I am still... what someone once called "a boil on the bum of humanity"

Best wishes and use TP as much and as often as you feel you need.

 

[Lynne]

Hello Hugh,
It sounds as if you and I are in similar positions, your MiL and my Mum being at the same sort of stage. Definitely something going adrift, but not yet diagnosed or admitted.

It's difficult to come out & say "let's go to the doctor and see if he thinks you're going dotty", isn't it! Like your mother in law, my Mum has quite a strong character (very independent, although not controlling) and it must be very annoying, and frightening, for her to suddenly find that she can't organise her own life any more, and have to accept help from other people. Naturally, their reaction is irritability (and that's often the reaction of their family members too, as THEY are distressed & frightened at what's happening). I have to be the first to admit to snapping at Mum, then thinking about what I said. And then wishing the floor would open up & swallow me. Mea culpa.

As soon as Christmas is over, I'm going to get her to the doctor for an assessment & memory test if humanly possible. I've already spoken to the doctor about the situation, and have very gingerly broached the subject to Mum, & at least she didn't refuse. Softly, softly ...

Hugh, dwelling with resentment on the past - when MiL dominated the family and influenced every decision too much for your liking - won't help anyone. I know that's easy for ME to say, but really - it won't. Your MiL is becoming a different person, soon to be an object of pity; don't punish that vulnerable person for things done in the past by a different, stronger, domineering woman. She won't be able to relate the two, and you'll despise yourself for it, as I do when I hurt my Mum's feelings. And you'll also be hurting your wife's feelings too, even if it's true. You have to all support each other, not add to each others problems.

In appearance, my Mum is still the same person; that person was feisty and intelligent and a wonderful person (as well as very stubborn - a familt trait I have inherited, unfortunately) but now she's unhappy & nervous & fearful because she's aware of what's happening to her, even though it hasn't been given a name yet. As an ex-psychiatric nurse herself, she must know and it must terrify her. 40 years ago when she was nursing, senile dementia was a dreadful diagnosis, treatment being to "put the affected person away" in a home, and then such homes were awful places. It will be very difficult to shift those memories, ironically, and get her to accept help and the likely increasing need for help. All I can do is take it day by day.

I thought that coming here might provide me with some answers but, although I have "met" some wonderful people here, that doesn't alter the prognosis. What it does do is show me that when tested, people like you and me DO cope, and do the best they can with a bad situation. I'm not going to turn into any angel, but I'll ride it out because WE don't have any choice. Mum didn't choose to become forgetful & irritating, or cantankerous, or illogical. Some "tricks of the trade" can be acquired from those here who have travelled this road ahead of us; not everything will be the same of course, but it helps to feel less isolated when faced with this new and disconcerting dilemma. I hope I'm up to the challenge, but I'm not kidding myself it's going to be easy. Even at this stage, I'm stressed out & exhausted, but perhaps that may change if/when a diagnosis is confirmed and the problem can be brought out into the open & the fresh air, rather than tip-toed around all the time.

Oh yes, Christmas? Personally, I've always thought it was over-rated as a time for family love & devotion. After all, why should a date make any real difference to human relationships; if you're at odds with someone 11 months of the year, things don't change just because a tree is trimmed & tinsel put round the windows. High expectations are invariably dashed, and further resentments built up as a result. So ditch the unrealistic expectations, & try to smile politely whilst biting a hole in your tongue - just like the last 25 years ...

Yours, with genuine sympathy

 

[Hugh Handen]

Lynne's thoughtfulness

What a wonderful process this correspondence is. Hidden depths in each of us are revealed by testing, sure. Nothing matches the perceptive insight of someone else, like Lynne, [don't be silly, there's obviously no-one quite like Lynne], when morale is looking for a fillip.

Wishing Lynne the wind at her back this season too - and Connie, and Rummy, and Brucie!

And you've all encouraged us to reflect on 'calm and accepting' already.

 

[Sheila]

Dear Hugh, your description of you MinL was so close to my own MinL that I made my hubby read it. I do hope you will continue posting your feelings and worries on TP. Share them with us, because so many of us will relate to you and together we can all help each other through this awful illness. Love She. XX

 

[Michael E]

I thought that coming here might provide me with some answers but, although I have "met" some wonderful people here, that doesn't alter the prognosis. What it does do is show me that when tested, people like you and me DO cope, and do the best they can with a bad situation. I'm not going to turn into any angel, but I'll ride it out because WE don't have any choice. Mum didn't choose to become forgetful & irritating, or cantankerous, or illogical. Some "tricks of the trade" can be acquired from those here who have travelled this road ahead of us; not everything will be the same of course, but it helps to feel less isolated when faced with this new and disconcerting dilemma. I hope I'm up to the challenge, but I'm not kidding myself it's going to be easy. Even at this stage, I'm stressed out & exhausted...................... ,


Just wanted to say how much I enjoyed reading that Lynne. It really does help to know there are others out there experiencing/feeling the same things.

Took Monique into hospital yesterday for an investigation into her 'constipation' which even after three visits of nurses to adminster Lavements- enama - all of which proved successful - except Monique could not remember she had been - but maybe - just maybe she does have something wrong in her bowel..
Felt dreadful leaving her there - wondering how she will get on finding the loo - waking at night to wander around not knowing where the hell she is... Felt sad but then walked home...
Got out some Atlantic charts to look at routes for the 'Jester' ostar, which I would love to have done this summer, cooked chili con carne with a bottle of red wine and had a great evening .....
Strange this morning not having to do the 'Pills into box' routine for her - do wonder how she is getting on but it is good to know she is in safe hands for to-day at least - and I can rattle around the house and post messages on the AZ forum... Really not much into Christmas either - hate looking at everyone in the street trying to spend their hard earned dosh on things their kids and they do not really need - seems all out of proportion somehow... and to come round full circle - really good to read Lynnes post and know - 'we are not alone'

Notwithstanding my Christmas doubts - do have a good one everybody and thank of coping with me these last months

loce

Michael
(worst news I cannot get the spell check in Firefox to install!!! see a bad side to everything!)

 

[Lynne]

Hello again Hugh,
Thaks for your kind words, but in truth it was less 'perceptive insight' and more that I recognised all the suppressed anger & frustration which you & I have in common!

I seem to blunder through each day in a permanent state of stressed-out-ness (I work fulltime, so my state of mind impacts on that too, and if the quailty of my work suffers I stress out about that as well, although I have a super-understanding boss). By the time I get back home to Mum, all I want to do is lock the world out & soak in a relaxing bath, but that can't happen. I have to put on my smiley face & suppress all those impatient reactions which spring to my lips (and sometimes. shamefully, past them) and deal with whatever has arisen, day by day.

That's why I used the expression "try to smile politely whilst biting a hole in your tongue - just like the last 25 years ..." - I'm there before you!

This month, and bloody Christmas cards, has really shown us (myself & Mum) how badly Mum's memory had deteriorated. Incoming cards are signed "David & Pat" for example, no address on Xmas cards of course. Now Mum can generally remember WHO they are (used to go dancing with her & Dad 30 years ago) but this year she can't remember their surnames. And her address book is ordered by surnames ... so we go through it from front to back, & from back to front, page by page, trying to find them. Multiply that by 40 or 50 cards to try & return somehow and I'm chewing on my tonsils, never mind my tongue! If it were me, I would say sod it, and not bother. A lot of them only ever send a Xmas card, never actually phone or have any other contact. But it's important to HER, so we do it. And she can't remember which kids' names match up with which niece or nephew, especially ones born in the last 5 years or so. Several people have received 2 (or even 3!) cards from her, whilst she forgot to send one to her only remaining living sister.

Now none of the above is earth-shattering in the grand global scheme of things, but sometimes it's the little things which wear you out, like drops of water wearing holes in a rock. Perhaps it's training for more testing times to come!
I'd rather not think about that, I'll just have to take it day by day, it's no good worrying about what might happen in the future, just as it's no good looking back at the past with either sadness or anger, saying "If only ..." The past is history, no-one can change anything back there, we just have to move forward.

And just to prove I'm not a total misery, and can take a joke against myself, your phrase "there's obviously no-one quite like Lynne" made me grin, as it brought to mind a little true story of my recent history. Now although I'm a practical person, can put food on the table & keep the place clean, I'm certainly not fanatical about it or house-proud. You wouldn't catch me watching cookery programmes or house makeovers on TV, they bore me stiff. (Now show jumping, or something like rallying or m/cycle racing, now you're talking about entertainment.) Anyway, a few years ago, whilst out having a drink with my then boyfriend, we met one of his friends (not known to me) and after chatting for about half an hour, the friend happened to observe "You're not exactly the Domestic Goddess type then?" whereupon my soon-to-be-EX boyfriend came out loudly with the response "Domesticated? Good God, she's barely even house-trained!" in our local pub, in one of those sudden silences which fall open. Embarrassed friend, uproarious (genuine) laughter from me, and one very, very nervous boyfriend, as he 'heard' what he said! Ah well, I would certainly rather be thought of as an odd-ball individual, rather than some sort of sorry stereotype (although I wouldn't mind Nigella's income!).

To finish on a slightly more serious note, whilst I feel great sympathy and understanding for YOUR situation, I can't help thinking also about your poor wife. 'Poor' in the sense that this is HER mother, and she has all the emotions which the mother-daughter relationship add to her mix, plus (possibly) a peace-keeping role too! AND whatever feelings your children may also be bouncing off her. Apart from your frustration (and as I said, I truly sympathise with that!) HER emotional distress is probably more complex. Given the history, she may have no-one to whom she can talk about it. Does your wife know of Talking Point, and would she use it? It's a great place for letting off a bit of steam (it DOES actually help!) as well as getting practical feedback from people who really understand.

Best wishes

 

[Lynne]

Michael,
I hope that you are both more comfortable after Monique's hospital treatment (her physically, & your peace of mind, plus of course a few hours break from the care-taking routine). Good luck with Christmas Dinner!

 

[pammy14]

The Chritmas card experience rang a bell with me. my sister with dementia has received many xmas cards. She looks at say half a dozen , does not recognise who they are from I explain one by one but by the time we get to the sixth i have to start all over again . After about half a dozen times I'm seething and have to tell her to be quiet. So sorry but a minute later she forgets i've told her. Just told her it was Xmas Eve and she was amazed.

 

[Lulu]

Lynne. How your posts here have really spoken to me, too. Thank you. Oh, and the Xmas cards. Mum's 3 sisters have received 14 cards between them from her. To everyone, a happy Christmas, and to Michael, Joyeux Noël.

 

[Sheila]

Dear Lynne, boy how your christmas card bit rings true. I am now determined to write my own lists with more information. So, If, (I hope not of course!!) I go funny before next crimble, "they" can do it for me!! It is these little things that only the closest have to deal with that are often the hardest, the hurtful(lest )and the nigh on impossiblest (?) to do but have to try to be done by that someone under the most awful pressure, that is the difference between having a close "someone" with dementia and being a "carer" with someone with dementia. I think all of us here on TP are the "carers" if we were not, we wouldn't have the need to post on TP would we? Thinking of you all this Christmas and hoping you have as good a one as you can, lotsaluv and Christmas hugs, She. XX

 

[Lynne]

Those bloody Christmas cards ...

I seem to struck a common chord there! I wish I could create a law which says that everyone has to put a return address on the back of the envelopes. NO - make that on the cards themselves, as of course Mum has taken them out of the envelopes!

Cheers everyone, keep smiling for another day.

 

[oonaghw]

Hugh, Lynne and everyone - thats the spirit of TP - with thoughts like that you can do anything!!

Oonagh