Guilt. Guilt.Guilt

[purchase]

Hi everyone

Had to post tonight because I am feeling so very confused and distressed.

I visited mom today and apart from the tears over the usual things, not wanting to stay in the care home and missing dad who died a year ago, she seemed so normal. Mom was diagnosed with AD last year and as I have mentioned before we were told that by now she would be very bad and not be able to recognise us. Well apart from her short term memory getting worse and her crying being just as bad she is the same as one year ago and I am starting to wonder if she has AD. Am I just fooling myself or is she just very very depressed. The thing is we were strongly advised to put mom into care because she was crying continuously and wasn't taking care of herself, hiding soiled underwear and not doing anything for herself. The final straw was when she found dad's clothes which we had hidden away and slashed them to pieces, she could have hurt herself. She has now forgotten that she did this. We tried so hard, my sister and myself but mom seemed to be going downhill and we were persuaded to put her into care. She thinks that she is only there for convalescence as we can't bring ourselves to tell her that it is permanent and have had mixed advice as to whether this would be a good thing to do. Anyhow this week we are giving her house up as it is rented and we can't pay the rent and the top up fees. IT ALL SEEMS SO WRONG It is too late now but tonight I feel so tearful and so sad and so guilty. She was saying that she is coming home at the weekend and I knew that she doesn't have a home to come back to. How hard is this. I know that you are all going through distressing times and somehow it helps to put my thoughts and fears into words. I don't want to let my husband and sons know how I feel because they feel that I should accept the situation and stop being so stressed. If only.

Thanks for reading this.

Jacky

 

[Brucie]

Hello Jacky

I understand your feelings and see completely why you are upset.

The hardest thing any of us can do is to have a loved one go into care. We feel we should be able to look after them ourselves.

First thing is to remind yourself that Mom was diagnosed with AD. That isn't an automatic thing that happens - it took me four years of tests to finally get a diagnosis for my wife, and those years were hell as I saw her confidence die, and her capabilities and her mind and her happiness just wither.

There will have been tests for Mom.

But dementia can ebb and flow in the early years and even later on.

If you have doubts about the diagnosis, go and see the consultant who made the diagnosis, chat over her current state. Even have her checked again to confirm things.

We all have these doubts about the diagnosis at some time or another. Depression is often the initial choice of the doctors when they start on their path to identify what is wrong. It is so much less a problem than dementia. Depression will often be present in someone with dementia, but often it is as a result of the loss of faculty [and the realisation that something is badly wrong], rather than depression in its own right.

How often did you see her when she lived at home? Frequently people with even quite advanced dementia manage to pull together enough capabilities to appear normal-ish when faced with a doctor or stranger - even a visiting relative. It is only when one is with them 24 hours a day for a few days that their ability to seem normal slips.

These first stages as the dementia develops are bad for everyone. Later they are bad as well, but at least we don't have the doubts.

Why not talk to the carers at the home and ask what Mom is like when you are not around? What she is like first thing in the morning. Last thing at night. Mealtimes. Bathtimes. From day to day.

I don't want to let my husband and sons know how I feel because they feel that I should accept the situation and stop being so stressed.

It is difficult to advise about family, but in your situation I would tell them exactly how I felt. You can't hold it in. They should know and also be sensitive enough to support you.

If you really can't tell them, then tell us on TP. You need to spill it out.

Best wishes

 

[purchase]

Thanks Bruce

Kind words. Just what I needed. We have asked the carers and they say that mom on the whole is fine except for the odd occasion when she cries for dad. This fact does help but I just wish we could have that mom

I think your thoughts on telling my husband are probably right but because of moms history, depression which made her very aggressive towards me and dad, he finds it hard to be very sympathetic towards mom though he does try and is very helpful when it comes to the practicalities.

Mom doesn't have a consultant at the moment. She has changed areas but I have asked that she be referred to another psychiatric consultant and am waiting for that to happen.

You are right again when you say that our loved ones put on a good show. Mom certainly does this. She has had tests as you say. I should be glad of the fact that mom has not deteriorated as fast as they said she would but sometimes I think it would be easier if she did go down hill. Isn't that awful

Thanks again

Jacky

 

[Brucie]

I should be glad of the fact that mom has not deteriorated as fast as they said she would but sometimes I think it would be easier if she did go down hill. Isn't that awful


... not awful, though of course it looks that way when you see it in black and white. Anyone who has been hands-on in this fight with dementia will understand entirely, absolutely.

he finds it hard to be very sympathetic towards mom

It is easier that way for him. But no matter how people have behaved/been in the past, it is still awful to see them in the throes of dementia, and defenceless now.

Anyway, it is not Mom he needs to be concerned about, it is you. He needs to be able to put whatever feelings he has had about Mom away for good now. She is not the same person any more. But you are the same person you were, you are hurting, and you need his support. Same goes for your sons; they should support you. Depends on their ages I guess as to how well they could do that.

 

[jc141265]

Guilt & depression

Jacky,

My Dad is in about Stage 7 and even now I have my doubts at times! He hasn't forgotten me or his family though he can't say our names anymore (strangely he appears to refer to us as numbers, my Mum is one, my sister is two, my brother is three and I am four, but even these expressions are becoming rare now). Until recently he could even learn new things, like when he went to a respite home, he learnt where his room was and although he'd go home again for months when he came back he knew exactly which room was his again.

Another thing that adds to the confusion is how sometimes he has days where he seems to have improved, he says words, he interacts, he smiles, he laughs he follows instructions. But unfortunately these moments don't last.

I think Dad still gets frustrated by being locked away, he walks to all the gates and shakes them and sometimes yells as well. But for the majority of the time, he seems to have come to terms with it. I have consistently explained to him (not knowing whether he understood or not) the reasons he is there, so he can be looked after, so he's safe, so I can be close by and so on and most of the time he seems to accept this now.

I feel the guilt too, I wish I could do more, and sometimes I know I could do more but then I ask myself, what would the Dad before alzheimer's have wanted me to do? He would have wanted me to live my life and then there is my husband to be, my step-daughter and i really need to be there for them too. I guess I just live with the guilt now, do my best each day and forgive myself for not being superhuman.

Last but not least Dad suffered from severe depression during the first stages of this disease. I often wondered if it was depression as a mental health issue or just a very smart man realising what was to come but either way he, a man who never cried, would just sit in tears all day, didn't want to try anymore and at times we feared he would take his life. Seeing what the disease has done, I understand why he behaved this way. A lot of it I think was due to him feeling angry at himself for not being able to beat the disease nor control it, and no longer being able to do the things that were so simple for him before. During those times I used to try and comfort him and pointed out to him that he was so much more than what he could and couldn't do, that he had done such marvellous things, that him just being there made me what I am, that I couldn't do the things in my life that I have done without him. Even his strength in living through this disease as best he could, was inspiring me, and that his feelings that it was all too much at times showed me how bad the disease truly was, and I was proud anyway.

 

[Brucie]

Nat, your description of your Dad's condition is SO similar to what I have seen with Jan!

That's a comfort to me.

 

[jc141265]

If its a comfort

I'm glad that i could be of some comfort, the amount I post on here, in the last week or so, I was beginning to think someone would tell me to 'shut-up for gawds sake!'

I tend to be a bit full on apparently! My husband to be, constantly tells me I think too much and that scares me a little in case I wear out my brain!!! I've seen what can happen to brains!!!!

Apologies to those sick of me, (already!)

On the topic of this post however, the depression in a loved one is so hard to watch.

Today was wonderful however, I went to see Dad, I was sick yesterday so didn't dare, but he was sooo delighted to see me, I asked him for a hug and he even gave me one and wouldn't let go for ages, and the smile of absolute happiness on his face was wonderful. I managed to make him laugh a few times today as well. Its these moments that help make the guilt not feel so bad. I live for these moments. Its so wonderful that he can still take joy from me, sometimes.

 

[storm]

Dear Jacky, Nat as got it spot on,mum is in the last stages of A/D she doesnt have a clue what time day or year is has forgotten most of her family cannot understand TV or conversations but when the odd son comes to see her very rarely i might add she seems to laugh or nod in the right places and he goes away saying have the drs got it right she seems fine!when i go back into her shes either forgotten hes been or says who was that man i really dont know how she does it.I stopped trying to fathom this illness out long ago,i think its easier in a way now to care for her than it was in the earlier stages because she just accepts what i have to do for her as normal when she was more with it she used to get upset because she could no longer do them for herself. Has bad as things are its not all doom and gloom we often roll with laughter together at some of things we get up to while trying to get in and out of bed i always try to end the day on a good note no matter how bad its been and start her day with a smile because one thing she can still understand is the tone of your voice and she will pick up on any mood so i always try and remain cheerful in front of her.STORM

 

[KittyCat]

What is to come?

Hello Everyone
Just joined up today, as - actually, I'm not exactly sure what my Mum (75) has been diagnosed with, as the consultant has never actually uttered the dreaded "A" word - but, she has been put on medication - Reminyl - so one can only assume that we're starting on that rocky road. We are 3 weeks into the medication.
Her memory at this stage is pretty much the only thing that seems to be failing her. I do realise that there are different stages and timescales on the progession of this disease for different people, but I would be grateful for some info or feedback on personal experiences, on the stages, - what to look for etc etc. Medication - how long is it before you see any benefit from the drugs?
I think Mum is in the early stages of Dementia, but after reading through some of the postings, I can see some similarities of things happening with people who have deveoped Alzheimers - incidentally, at what point does Dementia become Alzheimers?? Am I on the right track? Sorry to appear so ignorant.
KittyCat

 

[rummy]

Hi Kittycat,
Welcome to TP, this forum is wonderful

We saw improvement in my Mom within a month of starting Aricept. (76 yrs old) It seems like her episodes of extreme forgetfulness were lessened and the progress of her disease slowed down. I know it is different for everyone though and some people don't tolerate it well. I wish you well with it and hope you see results soon.
Debbie