Feeling guilty

[jeanierec]

Hi everyone

When I read what everyone else is going through I feel maybe I`m making a fuss about relatively nothing in the scheme of things and very humbled but although still in the very early stages deceiving Mum makes me feel so bad.

Since her diagnosis ,although in theory she`s not aware what the diagnosis was ,she seems to have got worse maybe its a confidence thing but when she makes me promise not to do anything with her and I know she means putting her in a NH I do promise and then just hope that by the time we get to that stage she`ll have forgotten that I promised.

Tonight for the first time in a week I managed to (nearly ) get through a conversation with a friend without falling apart .....progress maybe!

I decided earlier that I couldn`t visit TP for a while because facing what was to come was too hard and that in the interests of one day at a time ignorance is bliss but I felt the need to share with friends who totally understand after Mums phone call so thankyou for being there .

Night night

Jeanie x

 

[Cate]

Hi Jeanie

One thing that is not required here on TP is thanks.

Progress indeed, and you are right, it is one step, hour or day at a time. You have started on a very difficult journey with your mum, above all, be kind to yourself, seek help when and if you need it, be it here on TP, or professional help. Just know we are all here for you, be it for a good old rant, share a moment in time, or just to off load, and dont forget to visit Tea Room, some really good giggles happen there.

Try not to overload yourself with information all at once, seek it when you need it. When you can, just be you, not daughter or carer, times just to be yourself are so important, and will become more so as time goes on.

Take care.
Love
Cate

 

[sue38]

Hi Jeanie,

Please don't feel guilty about your posts. We too are in the early stages - my dad was diagnosed in December - and I can identify so much with your feelings. Just reading your posts and identifying with them offers support to me and, I'm sure, to others in the same situation.

Please keep posting.

Sue

 

[Grannie G]

Hi Jeanie,

Please don`t compare your pain with others. Whatever your pain, it`s yours, and can`t be minimised. All of us further down the line have experienced your pain and know it`s just as heartbreaking as any.

Reading your post makes me think perhaps your mother is more aware of her condition than you give her credit for.

I remember when my husband was first diagnosed, we kept it from him. But he knew something was wrong, as I feel your mother might. He lost confidence in himself as your mother has. he begged me not to put him in a home and your mother is doing the same.

You do right to play it by ear. One day at a time, may be a cliche, but it`s a true and valid cliche. You will know when the time is right.

I hope you keep posting on TP, because that will mean you are helped by sharing with friends who know where you`re coming from.

Take care xx

 

[Nell]

although still in the very early stages deceiving Mum makes me feel so bad.

she makes me promise not to do anything with her and I know she means putting her in a NH I do promise and then just hope that by the time we get to that stage she`ll have forgotten that I promised.

Jeanie x

Jeanie, it probably sounds AWFUL but I have found the deceiving gets easier!! Like you, I really struggled with the fact that I was not always able to be honest and truthful with Mum. After a life time of having this inculcated into us, esp. by our parents, it is SO hard to tell them what they need to hear / want to hear instead of the bald truth. I now find it easier because I know I'm doing it for "good" reasons - because she can't remember; because she's confused; or because the truth can only cause more pain.



It is natural that she should want this and I think you can comfort yourself with the knowledge that you mean what you say - whilst she is still at this stage. As time progresses and her condition worsens, it might be necessary to do something else (ie. find care for her). By that time she may or may not understand what is happening. But bear in mind that she may feel differently about the situation once it becomes a reality (IF it becomes a reality). I do believe that it is often the fear of the NH rather than the reality of the NH that causes our loved ones to be so anxious about them. Once she truly needs that care, it might be more of a comfort than a curse . . . . .??
We can only hope so, for her sake and your's. Thinking of you.

 

[Lila13]

I don't think I'd make or expect such promises as you never know how situations might change.

Lila

 

[Skye]

Hi Jeanie

Much sensible advice, and I can only add that I understand your feelings.

The best thing you can do is reassure your mum whenever she feels upset, and if that means not being totally honest, so be it. Of coure your mum is scared, so would I be if I felt I could not understand what was happening to me. Just be there for her, and let her talk about her fears.

Please keep posting. I know it's scary, reading the posts of people who are much further along the road, but for me, it helps to read what may happen in the future, and to know how others have handled it.

Believe me, we're all scared too -- at least, I am. And TP is the best support around, because it's there 24/7, and the responses are immediate.

Would that other support agencies could say that!

Love,

 

[Netty]

Hello Jeanie I know what you mean about being faced with "what may be to come" is too difficult. I am new here and sat here with tears the first few times I read some posts on the board. It frightened the living daylights out of me to be honest!

However, although I am more of a "lurker" than an active poster, I am beginning to get my head around it all, and in some strange way I suppose the knowledge I have gained from reading other peoples experiences has given me some confidence in my ability to cope with it all. Its certainly helped bucket loads to know that I am not on my own.

Take care
Annette

 

[Grommit]

Jeanierec, can't help a great deal I'm afraid but would like just to add my support in all that you are going through.

 

[Kathleen]

When Mum was diagnosed and as she worsened, she would say
"don't let them lock me up"

I used to promise her that she would never be anywhere that she wasn't safe and looked after.

So I didn't make a promise I knew I probably couldn't keep, but it reassured Mum, which is all that matters.

Kathleen

 

[jenniferpa]

Like Kathleen, I refused to make a blanket promise about "going to a home". I just said, very similarly, that I would always make sure that she was safe and as well-looked after as possible. On occasion she would try and press me that to promise that I "wouldn't put her in that place with all the loobies" (referring in a rather unfortunate manner to the nursing home which was attached to her then flat). All I would say to that was she wouldn't be put somewhere where she thought the people were loobies. As it turns out, she is now "in with the loobies" but of course she now has no idea that they are loobies, if you see what I mean.

Jennifer

 

[jeanierec]

Hi everyone

Mum has had loads of "phonecalls" today and bless her so have I !!

I`ve cried loads, full of self pity , but then I dip in and out of TP and try to get things in perspective.

Sylvia you have been enormously supportive of me and so many others and I`ve been so sad today hearing what you`re going through , my thoughts are with you and my prayers such as they are as an ever so slightly lapsed Catholic with amazing faith still !

And Jennifer your " loobies " made me laugh so thankyou for that in fact thankyou to everyone, its really strange cos as I read through your posts both past and present I get such a sense of starting to know you and making friends, this is an amazing community.

Night night

Jeanie x

 

[Grannie G]

Good night Jeannie, you certainly are making friends. You are even in good company having a good cry.

 

[Cate]

Phone Calls

Hi Jeanie

I have just had a thought about the phone calls your mum is getting. We had the same thing with my mum. After several weeks of her saying she was getting calls with 'nobody there', (and in response her calling me in a terrible state), and stupid me thinking it was mum being paranoid, I eventually called BT. They monitored her calls, it came to light it was a stupid call centre, which automatically dial numbers, and if there is no operator their end to take the call, the call is cut off. I was livid, not just with them, but with myself for thinking it was mum being paranoid (incidentially she thought it was a family member 'out to get her'). Maybe worth looking into Jeanie.

And from another ever so slightly lapsed Catholic, but also still keeping the faith, I reconsile with the 'big boss' that my fibs are told to ease mums worries along the way, and will answer for them when I get to the pearly gates.

Way back when, I used to promise I 'wouldnt put her away', and at the time I meant it, but sadly circumstances change, and I had to go back on my promise. But when I visit my safe and well cared for mum in the NH, I know I did the right thing.

Love
Cate xxx

 

[jeanierec]

Cate thankyou for that and like you 2 years ago I asked BT about these kind of calls and got the same response but now mixed in with these calls are the " other ones "where someone calls Mum a slag ( not a word I would have thought she was familiar with ) amongst other things she says she`s had 3 tonight and for the first time has mentioned about maybe getting these calls in the middle of the night which fills me full of foreboding , I`ve got her to unplug the phone in the bedroom and assured her that with two doors closed and the hall in between she won`t be able to hear the phone in the living room but I`m not awfully sure she actually spends much time in bed so fully expect to get a call from her in the wee small hours which although I tend only to catnap `cos I`m afraid of the phone going never the less frightens the life out of me when it happens !

Sylvia I`ve not had chance to read any of todays posts yet but I`m hoping you`ve had a better day but if not I`d feel privileged to cry in your company any day you are so brave !

Jeanie x

 

[Grannie G]

Hi Jeanie, We`ve had a much better day today, thank you.

No need for tears

love xx

 

[jeanierec]

Thankyou for letting me know so promptly Sylvia I`m so pleased for you ,lets hope for two days in a row!!

Love Jeanie x x

 

[Margarita]

My mother never seem to notice anything was wrong with her 5 years ago when first diagnosed with AZ, she was in the late stages anyway, but given Exira that seem to bring her back, now 5 years on she going back to wetting herself, and today coming out with don’t leave me alone, please don’t leave me along. I can only presume that she worried that I would put her in a care home, (I have been thinking about it, but never mention it in front of my mother) so was surprised she said that today and what did she mean ? So I ask her did her mother wet herself and went into a care home? she said yes she got very ill .she has more insight now that something is wrong with her then ever before .

 

[jeanierec]

Hi Margarita

I`ve been reading so much about everyone and you are so supportive to so many people I`d just like to say thankyou for posting to me.

I`m just at the start of this long journey and you along with so many others seem to have been struggling for so long that It gives me faith that however scared I am at the moment and believe me I am I will find the strength somehow to cope.

Night night

Jeanie x

 

[sue38]

Jeanie,

Have you registered with the telephone preference service?

http://www.tpsonline.org.uk/tps/

It doesn't stop all unsolicited calls but can cut them down. If you mention that you are registered with them the caller usuallly hangs up. I know that your Mum will not be able to do this but hopefully it will stop most of the calls.

Sue