Feeling guilty

[joanne d]

Both my parents have early onset Alzheimers and I am the main carer. T oday I have had at least 5 phone calls from my dad about arrangements for tomorrow.( I am going round to cook a meal for Mothers Day ). I did not lose my temper but with each phone call I was getting more and more stressed.

A few weeks agoIi had a bit of a meltdown and had to take a couple of weeks off work and take some time out from them.I am awaiting counselling and am now back in my caring role and trying to be a little more selfish with my time. However, I can feel myself drifting back into my old ways. Anyway , after a busy Friday with them I took today off (despite the calls) and became a couch potato for the day. I must admit, with hindsigh it was probably not a good idea. I am still a little down and maybe I should have taken myself out for a walk.

I'll get to the point now.... the last call was from my mother who told me the carers had not been and she had not had her medication. I hastily presumed that she may have forgotten they had been and when she pointed out 'how would I forget something like that!' I decided to use an example from last Sunday when she was adamant my brother had not been round been when I knew for a fact that he had. I know it was the wrong thing to say and in a better fram of mind I would have chosen not to but I was rather stressed at this point and lost my temper a little as did my mum who told me to forget it and put the phone down! My mother gets extremely anxious about her meds, about anything really and I didn t support her. I did call my brother and ask him to go round instead, however, I now feel so awful. I am crying as I write this because I am feeling so gulity. Am I so bad?!! I don't know what to do next!

 

[Anongirl]

Hi Joanne. I could have wrote this entire post!

My mum now has to use the microwave instead of her oven (gas left on 3 times). She is so nervous and anxious about making a mistake that she rings me every day, several times to say she is putting a meal in and asks several random questions and generally works herself up. I say the same three simple instructions every day. Plus it's written on her kitchen cupboard, plus notes on the microwave. Today I was so tired. I just needed time to myself. Then the call, I repeated the instructions, then another call, repeated again, by the third call I lost it. I shouted at her and just felt terrible. Just terrible. We are human though, it sometimes feels like mental torture.

I've had the meds issue too. She has been missed off rotas before so when she rang to say they hadn't been I rang the company and ranted at them only to be told the carer had been and given her the meds. I rang mum back and she said the carer had been but didn't give her the meds! She was adamant. She said she just came for a cup of tea!

Its an awful thing to live through, for them and us. You are doing the right thing by trying to have breaks from it (if only I could take my own advice!).

Keep posting, it does help to get it all out xxx

 

[minniemouse01]

Joanne, I can't imagine what it is like to have two parents with this awful disease. Do not feel guilty ! you are under a tremendous strain and I am sure what you are feeling sounds normal to me. You are human,not a machine.

|Be kind to yourself.

M xx

 

[joanne d]

Thankyou so much for that response. It's great to feel I am not alone. Please take break yourself as you do not want to end up like I was a few weeks ago!

 

[Anongirl]

I think that's why this site has been so important to me, there is always someone who is going through or has been through what I am (no matter how random!). It just makes you feel less alone. It's so easy to get dragged down by all this.

Very best of luck with the counselling xxx

 

[dognecks]

joanned take time out when you can, your dealing with this twice over , your not superwoman , but your an angel that needs to rest her mind and body as much as possible enjoying life, am afraid i have to send you a massive massive hug. i hope you enjoy mothers day . please take the time out, we need people like you in the world... from paul, carer for dementia ,learning dis

 

[tarababe]

Joanne I agree with everyone that you also have to look after yourself. I had the same issues with mum when she was at home. She could not tell the difference between the fridge, freezer and cupboards and put stuff in the wrong places. Although she managed to turn the oven on she would cook something until it was black. We found a melted tin of biscuits in there which I am assuming she put in thinking it was the cupboard.

Trying to explain to her to take new medicine was impossible. She couldn't work out which was the new box of tablets. Hubby spend 30 mins trying to describe it to her but to no avail. He even stuck little bits of paper with the tablet inside onto her doset box, but she couldn't work out how to open them, saying they were empty. OMG and the list goes on.

The point I'm trying to make is yes, it's so frustrating for us as carers. I know it must be awful for the sufferer to if they are aware enough to understand they are confused, but sometimes we do just snap. We are human at the end of the day.

Nothing I will say will stop you feeling guilty I'm sure, because nothing works for me and I feel it all the time. Maybe just knowing there are others who are going through the same stuff and feel the same may offer some peace of mind.

 

[joanne d]

Thankyou everyone for your advice and hugs. I am going to try and enjoy Mother's Day, after all , I am a mum myself. xxx

 

[joanne d]

Update! Mother s Day did not start too well. They had eaten most of the dessert and the potatoes that I had labelled in large letters FOR SUNDAY last night so I had to compromise.....luckily I had taken the chicken and the wine home to put in my fridge!
I kept my cool and we had a reasonably pleasant meal.
Later that day I spoke to my sister in law who had gone round with my brther last night after the debacle i have previously mentioned. The carers had indeed been and given my mother the medication! She was in complete denial and adamant still they had not been. Worse than that she was venomous and said some terrible things about me. I did not ask what! I am now terribly upset again. I cannot cope with being on the end of this terrible criticism when I am trying to do my best.
Please send some words of wisdom!!!

 

[Anongirl]

Ohhhh I can't find any words of wisdom so I'll send you a ((hug)) instead. Someone more wisdomly will be along shortly!

I didn't have a terrible day but I just can't stop crying tonight. I wish I could just stop all this happening. X

 

[Liz1397]

Ohhhh I can't find any words of wisdom so I'll send you a ((hug)) instead. Someone more wisdomly will be along shortly!

I didn't have a terrible day but I just can't stop crying tonight. I wish I could just stop all this happening. X

Really feeling for you and Joanne

 

[velocity]

There is no way you are bad, just human, all these feelings just round and round, it seems a very cruel disease for everybody concerned.

 

[joanne d]

Aw Thankyou everyone. Anongirl, we make a right pair don't we! Good Luck.x

 

[Witzend]

Update! Mother s Day did not start too well. They had eaten most of the dessert and the potatoes that I had labelled in large letters FOR SUNDAY last night so I had to compromise.....luckily I had taken the chicken and the wine home to put in my fridge!
I kept my cool and we had a reasonably pleasant meal.
Later that day I spoke to my sister in law who had gone round with my brther last night after the debacle i have previously mentioned. The carers had indeed been and given my mother the medication! She was in complete denial and adamant still they had not been. Worse than that she was venomous and said some terrible things about me. I did not ask what! I am now terribly upset again. I cannot cope with being on the end of this terrible criticism when I am trying to do my best.
Please send some words of wisdom!!!

Oh, I am so sorry - this is so terribly hard for you. I can't help wondering why they told you, or what they thought it would achieve. But this is one of the hardest things, IMO, vile things said when you are doing your very best. What I found even more upsetting than personal abuse was my mother saying horrible and quite untrue things about my sister and my daughters.
Oddly enough she never said anything about my brother, who was very good and running round after her an awful lot - but she did say awful things to his face or on the phone, and one thing I will never, ever forget, is hearing my usually robust and jolly brother break down into heart-rending sobs on the phone because of the dreadful things she'd said to him.
It was just the once, but it has stayed with me ever since.

You keep telling yourself they can't help it, but it's so hard not to let it affect you. The only comfort I can offer is that this stage does usually pass eventually, that is if they live long enough.
Thinking of you, and wishing you strength for this horrible journey. X

 

[Anongirl]

Thanks Joanne, after my outpouring yesterday I am stuffing my face with chocolates tonight! X

 

[Margaret W]

Enjoy the chocolates, lovely.

My mother infuriated me too. I can quite imagine that had I had to endure it all for much longer I would have cracked. Fortunately she was "taken in" to the care home at the right time for me.

Looking back, I had it quite easy compared to some, though at the time I was creased with guilt, worry, stress, failure, you name it. The care home had its own stresses. She accused carers of hitting her, and indeed it was not without some foundation, though nothing was taken further. Money was running out. I hated visiting her, she was so boring and disinterested, I felt bad, mad and ugly. She died in November 2008, very suddenly, and I was almost glad.

Then my daughter announced her engagement to a lovely young man, and we met his parents at a barbecue. Nice couple, lots in common, and an elderly mother with dementia. But what a different approach they had. Mum would be ringing them 30 times a day. They didn't bother. It didn't get to them. They answered every time. 30 seconds to say "Mum you have already asked that, go back to bed, goodnight", and that was it. I asked wasn't it exhausting for them and they said no. Eventually they admitted they turned the phone off between 1 and 5 a.m. but otherwise they answered. They didn't get stressed about it. Just did it.

Are they superhuman?

I think not. They are simply not pro-active as some of us are. They are not constantly looking for solutions and trying to make things better. They just accept that she has dementia (she has had no diagnosis and they have no intention of seeking one), and this is how it is. Nobody ever gets angry with the old lady. She visits my daughter, son in law and new baby, and thoroughly enjoys it. She has no idea who they are. We've taken photos of a smiling great grandma with her great grandson and she has not a clue that he is anything to do with her.

They seem to take a que sera sera attitude and it certainly seems to lessen their stress.

It might work for some of you. Maybe you would need to "work" on it yourselves. But they seem to manage grannie very well.

Which approach is right? Either, neither or both? Probably all of them.

Love

Margaret

 

[kandeg]

Mum's in denial, no diagnosis, early days and I'm suicidal! How am I going to cope??

I'm at my wits end. My hubby and I are convinced mum's got Alzheimer's (possibly vascular following a stroke 2 years ago). It's getting worse, but she's aggressively in denial - "I can't see anything wrong", although she laughs with friends that she can't remember anything.

Most of the time she doesn't know what day it is, can't remember the previous sentence spoken, where she is...

Forgetfulness, I can cope with. Her constant snapping, griping, complaining and snide comments have me at the end of my tether. She's suspicious of our motives, and thinks everyone is talking about her behind her back - which is silly, because although some peeps are, she's deeply loved by all her friends. But no-one sees how she treats us, and we just can't go on.

We've tried calm, heart to heart chats, appeals for her to go to docs...

I feel like a bad daughter. I don't feel I have anymore love left for her; If I tell her it's putting a strain on my husband and I, she says she'll move away or will end our relationship (!?).

Please, any help/suggestions.

BTW, I am booking an emergency doc's appt in morning for myself, so the suicide bit will be 'looked after'.

 

[FifiMo]

It often happens that the ones that the spite and aggression is taken out on are in fact the ones who do the most and are the closest to the dementia sufferer. Sometimes you find that the ones who are in denial are the ones you have the worst reactions and outbursts.

I think what happens is twofold. The first is the charade that they have to maintain in order to avoid being caught out. Who are the ones that would notice subtle changes the most? The ones that know you the best. I can only imagine the fear that they must have and trying to maintain a front when your brain is gradually deteriorating, must take almost superhuman effort. You have to be on the defensive all the time. Then your own family, the ones closest to you, are your biggest risk of revealing just how bad you really are.

Secondly, the paranoia starts. The fear that your own family are conspiring against you. When things go wrong it is obvious that it is the family. They are trying to make you look stupid. No one else thinks I have a problem (if only they knew how thin the veil is) so they wouldn't be the ones to set me up. My family are wanting to get rid of me...they want to get their hands on my money/house/whatever...they're the reason things are going missing...they think that I don't notice what they are up to...

Sadly, the reality is very different. Their fear of what might be Wong with them, being discovered, manifests itself as anger and aggression against the ones who you feel might betray you to the Authorities. They are family however so are easier to threaten. If you vent all your frustrations, they will stick around and are able to be controlled somewhat. When the memory is getting worse and things to missing, the brain is no longer able to fully work out what is going on. "I can't remember where I put xxxxxxx" very easily gets replaced with "something is missing...someone stole it...only people who have been here are my nearest and dearest...that's it...that is who the thief is!!" This is where the cycle then starts. You, the family, become their the focus of all that ails them and what is more, you are powerless to do or achieve any progress as they no longer have the ability to rationalise, follow and understand any reasoned arguments.

So, what to do...you can tell them that you won't tolerate being abused/shouted at on that manner. You give one warning,then you walk, or lay the phone down (do not hang up the phone unless you want them to start doing the same thing to you). You get some sense of self preservation by doing this. You know it is the illness therefore you have no reason to feel guilty. Whilst they don't know any better, you do. Sometimes just the act of leaving the room and coming back a few minutes later as though you've just arrived is enough to defuse the situation and if not, then you have at least not had to listen to the horrible words that are being said. They are just a manifestation of a scared and confused person letting go of pent up frustrations. They are nothing really to do with you at all.

Hope this helps. As usual this is just based on my experiences.

Fiona

 

[joanne d]

Margaret W and Fifimo . Your words and ideas are genius. I have never thought of the situation in those ways. Thanks for the wonderful advice.I feel beter already and will definitely try them out.

Jo.x

 

[Anongirl]

JoanneD you took the words out of my mouth (or keyboard!). Margaret W and FifiMo I read your replies this morning before I went to work and it brought a lump to my throat. You have such great insight into all this. I sometimes can't make sense of it all. I'm hurting so much that I just can't think straight. Sometimes you just need someone to put things in perspective.

I had a rough afternoon today. I can't carry on like this and I know I have some serious decisions to make. I know this will upset mum who just wants to stay as she is but hearing people tell me how mum is struggling and listening to her anxious phone calls I know I can't just pretend this isn't happening. I'm close to meltdown, I know that. X