Feel so guilty

[Suzie G]

Mum had a planned visit today from two OT support workers. I'd got to her house a couple of hours before after my 50 miles on the motorway, as I do every other day. I'd made sure she was feeling ok, shopped for her, made lunch, cleaned up, emptied bins etc etc by the time the two ladies arrived. They were lovely with her. One spoke to mum for 30 minutes whilst the other talked to me...well she let me do most of the offloading! Things have been building up in my head for weeks.
After they've gone, mum goes into full on verbal attack mode - I've brought them around to spy on her to get her put away in a home. This is not new, but my reaction was. I've just had enough.......
I told mum she was lucky to have me, I'd given up my job to care for her, moved 50 miles away from my own kids and put my whole life on hold just so that she DOESN'T have to go into care. Then I burst into tears, picked up my coat, walked out the door and drove off, shaking like a leaf. I've sobbed all the way home and feel like the worst daughter ever. How do other people cope with feeling like everything you do is never enough.......I want to scream!!

 

[DollyBird16]

Oh @Suzie G what an awful day for you.

I know how you feel, my tounge is sore from being bitten so much.
You know sometimes we just need a good cry to get some of out pain out.
Sorry I’m not going to change anything, but I can empathise with you on the all give, which is followed by the cutting words.
I torment my self trying to find an answer, do more to try and please, it doesn’t work, I’m only punishing myself.
I remind me, I’m the one doing it so have to live with my choices.
Ooh that got deep, must dash, got to go to / choosing to go to Mum.
I’ll be back later.

Keep posting you are not alone. X

 

[Trapisha]

Mum had a planned visit today from two OT support workers. I'd got to her house a couple of hours before after my 50 miles on the motorway, as I do every other day. I'd made sure she was feeling ok, shopped for her, made lunch, cleaned up, emptied bins etc etc by the time the two ladies arrived. They were lovely with her. One spoke to mum for 30 minutes whilst the other talked to me...well she let me do most of the offloading! Things have been building up in my head for weeks.
After they've gone, mum goes into full on verbal attack mode - I've brought them around to spy on her to get her put away in a home. This is not new, but my reaction was. I've just had enough.......
I told mum she was lucky to have me, I'd given up my job to care for her, moved 50 miles away from my own kids and put my whole life on hold just so that she DOESN'T have to go into care. Then I burst into tears, picked up my coat, walked out the door and drove off, shaking like a leaf. I've sobbed all the way home and feel like the worst daughter ever. How do other people cope with feeling like everything you do is never enough.......I want to scream!!

I do know how you feel you are not the worst daughter ever you are suffering from emotional
stress because you care so much. Its very tough on us carers especially when its your mom or dad i keep hoping that i will accept things the way they are and be more helpful but i get angry
and upset often because i still find it hard to admit my mom has dementia every day i wake up
and worry what the day will be like and its caused anxiety for me and i too feel guilty for loosing
my temper sometimes when she can't remember something that just happened an hour ago
i feel like running away sometimes. Talking on here helps you know that its not just you that
feels like this so keep talking and it gets it off your chest at least .xx Take care.

 

[Suzie G]

Thank you for the kind words of support. It means a lot. I know I need to stop beating myself up. I tell myself every day that I'm doing the best I can for mum in the circumstances we're in. I also try to only deal with the day itself, because looking too far ahead is pointless and worrysome. Still lots of work to do on this one!

 

[DollyBird16]

Me too, just deal with what today delivers, tomorrow is tomorrow.

TP is great for pouring it all out, simply because everyone gets it and there is no judgement.
As much as friends listen, they don’t get it and of course TP open 24/7. x

 

[Hazara8]

Mum had a planned visit today from two OT support workers. I'd got to her house a couple of hours before after my 50 miles on the motorway, as I do every other day. I'd made sure she was feeling ok, shopped for her, made lunch, cleaned up, emptied bins etc etc by the time the two ladies arrived. They were lovely with her. One spoke to mum for 30 minutes whilst the other talked to me...well she let me do most of the offloading! Things have been building up in my head for weeks.
After they've gone, mum goes into full on verbal attack mode - I've brought them around to spy on her to get her put away in a home. This is not new, but my reaction was. I've just had enough.......
I told mum she was lucky to have me, I'd given up my job to care for her, moved 50 miles away from my own kids and put my whole life on hold just so that she DOESN'T have to go into care. Then I burst into tears, picked up my coat, walked out the door and drove off, shaking like a leaf. I've sobbed all the way home and feel like the worst daughter ever. How do other people cope with feeling like everything you do is never enough.......I want to scream!!

A small but I trust helpful note, in respect of your experience cited here. My dear sister came from her home abroad, to assist me caring for our mother, who was early to mid-stage Alzheimer's (you can never be specific about this disease -each person presents in their own way). One night, during a bed-wetting episode, mother was very abrasive towards my sister, in effect told her she was not bothering etc., whilst we remade the bed and so on. At one point, my sister angrily retorted "You are just being bl...y awkward!" and stormed out of the bedroom. My sister was a highly trained and experienced Ward Sister/Tutor and more. I knew that we were dealing with 'dementia' and NOT my true mother. So often what comes over as being meant and aggressive or vindictive IN THE THROES OF DEMENTIA , IS NOT THE CASE. This is a very hard nut to crack at times, but it is a fact. My mother went through paranoia, tantrums, delirium, hallucinating and all the rest of it, prior to eventual placement in a Care Home. The 'true' mother I knew was still there, if you were aware and very attentive to the disease as being the culprit in all of this. That became more evident as the months went on and she 'settled' in the home and a continuity of proper care took place. So, what I am saying here, is that the very real and painful confrontations, whilst difficult in a 'compos mentis' situation, must be seen as 'imposters' within the domain of dementia world, i.e. they are NOT meant. It takes a shift in one's thinking to see this as actual FACT. If I had told my mother how she had at times behaved towards me (her 24 hour, 12 year carer) it would have literally broken her heart. Dementia is cruel in so many ways. It takes enormous reserves of energy and quite in-depth
perception to address it in a loved one. It is quite clear that you are doing everything possible to carry out the caring role for your mother. Let the true adversary be 'dementia' despite the angst and see the one afflicted as the innocent party. See if that alleviates the frustration and the heartfelt distress. Try not to confront in anyway .... as dementia will win out, always and leave you ever more in a quandary than before. With warm wishes.

 

[Suzie G]

Yes, it's ironic really because last week I attended a course for carer's and a consultant spoke at length about the changes in the brain and the importance of trying to empathise with the PWD in order to understand what is happening, so you can then deal with the situation more appropriately. It was fascinating and I learned so much....and then today my attempt to empathise went out the window within 2 minutes! I guess it was just a build up - a few difficult/stressful events over the last few weeks just built up and I ended up walking away.
I'll be fine tomorrow, and the next day, and the next.........just using TP to let off steam! Thanks x

 

[Kikki21]

You can only do what you can do & everyone is different.
For me, I knew that my mum wasn’t coping being on her own. She would say she was lonely day in, day out. Nothing was ever good enough for her, I could have called round every day to see her & it still would not have been good enough. 4 care calls a day weren’t good enough & it took 2 hospital admissions for her to have to go down the care route.

Sometimes you just have to say, it is for the best but it depends on your circumstances.

 

[rhubarbtree]

Hi Suzie,
Sorry you were so upset today, we all have bad days. I noticed you said two OTs. Was this part of the VALID programme?

 

[Suzie G]

Hi rhubarbtree, not sure, I haven't heard of that? It was an Occupational Therapist Support worker who's been popping in every few months for the last 12 months, plus a nurse accompanying her. Not sure why. It's the first time I've met them, though we've spoken on the phone many times. This was the first time in 6 months that their visit coincided with mine. Quite useful in trying to get mum to accept visitors other than me, as she usually refuses to let them in because there is "nothing wrong" with her...I think it's seen as the first step in the proposed Care Package for mum.

A friend has suggested something and your opinions would be helpful...because at the moment I do everything in terms of keeping the house clean, tidy, bins emptied, out of date food chucked etc etc...so to an untrained eye, mum looks like she's living really well. If I didn't travel over every other day to keep on top of it, she'd be living in squalor within a few weeks. So...here's the thing...should I stop cleaning/tidying so the care workers (when they start) and any other healthcare professionals can see what state she is actually in without my support?
To be honest I'd find it hard to carry on visiting and NOT pick up the rubbish and empty the bin etc, but I can see my friend has a point. At the moment it looks as if mum is managing really well because I'm doing all the visible stuff. Should I just visit/check she's ok obviously, go out for lunch etc and leave the house to deteriorate? What do you all think?

 

[rhubarbtree]

Hi Suzie,
I asked about VALID because we were on a ten week programme that started with two OTs visiting and speaking to us separately. It was a bit disconcerting having two interviews going on in our home at the same time and it was quite intense. I just wondered if you and your Mum were overtired after the visit. Plus you had been rushing around getting the house tidy. Problem is we do like to present ourselves and our homes in the best possible way. And that moves on to your question. From what I have read you are not a person who could leave their Mum in a mess. In a way that is what Social Services relies on. It is good that they are starting to think about a care plan and hopefully your Mum will go along with them. Some people suggest presenting carers as a way to free you up to take Mum out. Perhaps you could start collecting evidence of the chores she is missing. A couple of discrete photos before you start work and keep a list of all the things you have to do.

Some things never change. My mother had me and my two sisters (and our husbands) dancing attendance on her every whim. But when we did not react quickly enough (work got in the way) she would employ one of those rogue traders who knock on the door. £400 to fill a small gap in her path leaving a trip hazard.

 

[TheHoff]

Mum had a planned visit today from two OT support workers. I'd got to her house a couple of hours before after my 50 miles on the motorway, as I do every other day. I'd made sure she was feeling ok, shopped for her, made lunch, cleaned up, emptied bins etc etc by the time the two ladies arrived. They were lovely with her. One spoke to mum for 30 minutes whilst the other talked to me...well she let me do most of the offloading! Things have been building up in my head for weeks.
After they've gone, mum goes into full on verbal attack mode - I've brought them around to spy on her to get her put away in a home. This is not new, but my reaction was. I've just had enough.......
I told mum she was lucky to have me, I'd given up my job to care for her, moved 50 miles away from my own kids and put my whole life on hold just so that she DOESN'T have to go into care. Then I burst into tears, picked up my coat, walked out the door and drove off, shaking like a leaf. I've sobbed all the way home and feel like the worst daughter ever. How do other people cope with feeling like everything you do is never enough.......I want to scream!!

This sounds so familiar..I've gone through these feelings and emotions. I made a promise to my mum that I wouldn't put her in to care and tried everything. Supported living, additional care etc. On Thursday mum went in to care. I feel terrible but options become narrower the more the dementia progresses. I had a health scare last week resulting in paramedics coming to my house. It made me realise that I have to look after myself otherwise I can' look after anyone. Stress is a killer. Fact. We just have to console ourselves in the thoughts that the person with dementia has no control of their thoughts and feelings. They live in constant fear and anxiety and all we can do is cherish those few times when you receive a smile or perhaps just acknowledgement.

 

[TheHoff]

A small but I trust helpful note, in respect of your experience cited here. My dear sister came from her home abroad, to assist me caring for our mother, who was early to mid-stage Alzheimer's (you can never be specific about this disease -each person presents in their own way). One night, during a bed-wetting episode, mother was very abrasive towards my sister, in effect told her she was not bothering etc., whilst we remade the bed and so on. At one point, my sister angrily retorted "You are just being bl...y awkward!" and stormed out of the bedroom. My sister was a highly trained and experienced Ward Sister/Tutor and more. I knew that we were dealing with 'dementia' and NOT my true mother. So often what comes over as being meant and aggressive or vindictive IN THE THROES OF DEMENTIA , IS NOT THE CASE. This is a very hard nut to crack at times, but it is a fact. My mother went through paranoia, tantrums, delirium, hallucinating and all the rest of it, prior to eventual placement in a Care Home. The 'true' mother I knew was still there, if you were aware and very attentive to the disease as being the culprit in all of this. That became more evident as the months went on and she 'settled' in the home and a continuity of proper care took place. So, what I am saying here, is that the very real and painful confrontations, whilst difficult in a 'compos mentis' situation, must be seen as 'imposters' within the domain of dementia world, i.e. they are NOT meant. It takes a shift in one's thinking to see this as actual FACT. If I had told my mother how she had at times behaved towards me (her 24 hour, 12 year carer) it would have literally broken her heart. Dementia is cruel in so many ways. It takes enormous reserves of energy and quite in-depth
perception to address it in a loved one. It is quite clear that you are doing everything possible to carry out the caring role for your mother. Let the true adversary be 'dementia' despite the angst and see the one afflicted as the innocent party. See if that alleviates the frustration and the heartfelt distress. Try not to confront in anyway .... as dementia will win out, always and leave you ever more in a quandary than before. With warm wishes.

Wise words

 

[Grahamstown]

I lose my temper, know it is wrong but I get to the end of my tether, pick myself up and try to calm down and start all over again. He doesn’t seem to remember. It’s the breakdown of rational thinking that is so hard but it simply isn’t there any more. I too was a nurse for many years and looked after PWD but I still can’t maintain that professional attitude 24/7, it’s too great a strain to keep up constantly and to behave instinctively is a temporary relief even though useless.

 

[Hazara8]

I lose my temper, know it is wrong but I get to the end of my tether, pick myself up and try to calm down and start all over again. He doesn’t seem to remember. It’s the breakdown of rational thinking that is so hard but it simply isn’t there any more. I too was a nurse for many years and looked after PWD but I still can’t maintain that professional attitude 24/7, it’s too great a strain to keep up constantly and to behave instinctively is a temporary relief even though useless.

Understood entirely. None of this is at all easy. Every single case is different, as we all are as individuals. All the introspection or intense research in respect of the brain, studying the variants in dementia in terms of presentations (Alzheimer's. Vascular, Frontotemporal, Lewy bodies ... etc etc.,) for all their obvious and important worth, alas, do not address the factual situation when it comes to CARING. Then, it rests with you and you alone to make the adjustment accordingly. What seems strange or even contrary to common sense, in fact becomes a kind of norm - that is, once you enter 'dementia world' and move within it. Again , not easy - but then you are dealing with millions upon millions of neurons, some of which are being damaged. The sheer complexity of even a basic neurological event somehow compromised by a disease, makes the mind boggle. Thus any conflict will fall on arid ground - the damaged brain cannot communicate with what we see and feel to be a 'norm' in behaviour. Early stage Alzheimer's is often 'mild' in that respect (I have frequent interaction with someone in that mode and it is calm and constructive -- at the moment). In effect, if one can do so, the least stressful path to tread, is one which does not challenge, contradict, question. Other elements (external to the dementia, say smoking, drinking, drugs etc) have to be addressed of course. Being a professional nurse (yourself) provides one with very useful tools, but once the subject of your care becomes 'your own' .i.e. family and a loved one, that direct relationship opens up a hitherto unseen can of beans. This whole area remains, much like the universe, largely unexplored, specifically in terms of communication and enabling quality of life and the continuity of which, for BOTH parties. When there is an outcome, albeit seemingly insignificant in the way of things, then it is genuinely heart-warming. Like a tearful smile of relief and calm borne out of what was earlier a state of trauma and fear - not able to analyse, nor say what took place in that extraordinary cerebral world - yet a wholly positive result and outcome. And that is really all that matters. Tomorrow is an another day ....

 

[Suzie G]

Thanks for the wise words and support. I've been keeping a diary for the last 3 months to record every visit, any problems that occur, anything that puts mum at risk etc. Also have photos of the 'poo' on the carpet and hidden medication (pills in the freezer/breadbin) etc so SW and OT are aware how much she is relying on me to stay in her home, as otherwise she can present quite rationally and normal, great at 'hostess mode' as I've posted before on TP.

Just got home now after a 100 mile round trip and feel a little better. Not a bad visit on the scale of visits recently. 7/10.

Ianhassall you made the point about being grateful for glimpses of the old mum and being able to cherish it when it happens....today for the first time in over a year, mum actually initiated a hug as I was leaving and said 'Thank you'! I was stunned! Made me feel a little better & stronger.
Today I'm feeling I can cope better with all the emotional fallout and grief etc, but my feelings of frustration and guilt have been replaced by anger. Not anger to mum, but anger that this is happening to her and to me. This is not what I had planned for my 50's!! And downright FURY at my absent brother, who lives 200 miles away but has not been in touch with us for over 3 years, not even a mother's day card. When I told him about the Alzheimer's diagnosis, that was it. His excuse to drop us both in it and leave us to it. This is a grown man of 49 I'm speaking about, not a confused adolescent. I know I started this thread with a rant of guilt and shame on my part, but it's not long before that shame is replaced by feelings that - actually - compared to him, I'm not the one who should feel ashamed when looking in the mirror. I am frequently horrified by the postings on TP that reveal how so much of the responsibility for caring with a PWD is centred on one individual.
How do others cope with the total anger and rage directed at the absent ones, alongside the overwhelming emotions of just dealing with the caring? I feel that my emotional state veers between shame and guilt that I'm not doing enough, and rage and fury at my absent brother. All these emotions are corrosive and I know they are really bad for me. My stomach is in permanent knots, I'm not eating, not sleeping, crying all the time.....don't really know how to find a way of switching off. Even on my days away from mum, when I'm doing something for me (swimming) my mind is racing and stomach churning....
Sorry for what has turned into a rant!

 

[Suzie G]

Hazara8 : our posts crossed. Thanks for the very wise counsel. Yes, tomorrow is another day and I've tried to use some of the mindfulness techniques to live in the moment and focus on breathing etc. Until the last week or so I think was doing ok really. I don't know what has suddenly changed, can only think I'm tired and a bit over emotional. Perhaps guilty (damn, there's that word again!) of bottling things up ad not letting it all out!
I also found the OT visit on Thursday exhausting. Telling a professional about all the bad stuff that's happened over the past 8 months is draining, you live through it all again in the telling. I should have foreseen that I'd feel like this afterwards maybe?

 

[lambchop]

I can tell you what I went through - I was ok at first with mum's vascular dementia, but, as time went on, and mum's dementia got worse, my anxiety increased and I coped less and less well. I kept losing my temper. I had huge anxieties over mum's health and I, too, couldn't switch off. I tried so many things, including mindfulness, but, in the end, I had to go onto anti-depressants to help me cope. And they did help me for the most part, as well as, most importantly for me, the realisation and acceptance that I could not control mum's dementia. Once I accepted that, my anxiety lessened and I coped better. I almost reached burn-out, but I managed to still care for mum at home until she died. However, that was my choice.

It takes a great deal of work to truly understand that it is the dementia that is controlling the PWD's behaviour and we cannot control it ; we can only do our best to work with it, ideally with help.

So, help is essential, whereever you can get it. If a carer is shouting, this, alone, is a warning sign that the carer is having problems coping and, therefore, the carer's needs and the PWD's needs, require safeguarding, to enable you to cope and carry on with caring, if that is your wish.

Support groups can be very helpful in giving you ideas or to find peers who share similar problems. The Alzheimers' website has lots of information on carer stress. It is hugely important to highlight YOUR needs as well as your mum's. Tell your GP, the social worker, the Alzheimer's helpline - anyone.

But if you decide you can't cope any longer, that is not a judgement on you - in fact; it is brave and honest to realise this and accept you can't carry on.
Best of luck.

 

[smartieplum]

Mum had a planned visit today from two OT support workers. I'd got to her house a couple of hours before after my 50 miles on the motorway, as I do every other day. I'd made sure she was feeling ok, shopped for her, made lunch, cleaned up, emptied bins etc etc by the time the two ladies arrived. They were lovely with her. One spoke to mum for 30 minutes whilst the other talked to me...well she let me do most of the offloading! Things have been building up in my head for weeks.
After they've gone, mum goes into full on verbal attack mode - I've brought them around to spy on her to get her put away in a home. This is not new, but my reaction was. I've just had enough.......
I told mum she was lucky to have me, I'd given up my job to care for her, moved 50 miles away from my own kids and put my whole life on hold just so that she DOESN'T have to go into care. Then I burst into tears, picked up my coat, walked out the door and drove off, shaking like a leaf. I've sobbed all the way home and feel like the worst daughter ever. How do other people cope with feeling like everything you do is never enough.......I want to scream!!

My mum is now in a home but before she went in I told her I hated her. I was burned out, she was so demented and it built up. I will never forgive myself. Ever. I dont hate her, i adore her. I hate the disease. I hope she doesn't remember. People tell you, oh they don't remember but how do they know. Sorry I don't have any words of comfort but can empathise.

 

[Trapisha]

My mum is now in a home but before she went in I told her I hated her. I was burned out, she was so demented and it built up. I will never forgive myself. Ever. I dont hate her, i adore her. I hate the disease. I hope she doesn't remember. People tell you, oh they don't remember but how do they know. Sorry I don't have any words of comfort but can empathise.

I know how that feels smartieplum, i told my mom she was ruining my life and was crying
a lot one day, then felt awful and guilty and hoped she had forgotten it next minute which
she probably had. Its the emotional stress that causes it because we love them so much
its the hateful disease we hate xxxx