Feeling guilty as hell....

[Debisfab]

I've just joined the forum this week and have found a lot of comfort reading everyone's threads...nice to know I am not alone. The problem I'm having is with the guilt. I live 250 miles away from my family and drive down there every month to spend 5 days helping mum look after dad, who has severe Alzeheimers. I feel constantly torn between my family, running my business, my partner and having my own life. So the feelings of selfishness and guilt are running high, even though no one is pointing a finger at me and I know I am doing all that I possibly can in the circumstances.
What is making it worse is that Dad is in hospital and is getting shunted between wards - he has a suspected infection - but no one is giving us any information about what will happen when he is sent home despite liaison with Social services, Gps, mental health units etc...so frustrating! He seems to have deteriorated whilst in hospital and I know that mum won't be able to cope with him. I'm assuming that he won't just be sent home without a care package of some sort in place? We are just in limbo land waiting and everything seems to take so long despite being 'in the system'. Any helpful advice most appreciated.

 

[together]

I can really feel for you, itis so hard trying to support from a distance, both practically and emotionally. From my own experience I'm afraid things never seem to move quickly with assessment etc. If you really don't think your Mum can cope caring have you raised alternatives with her? I used to say a little at a time to Dad when he was in a similar situation. When visiting the hospital can you get to know one main nursing staf member that you can contact when you're not there to keep up to date with how things are progressing (often easier said than done I know!).
Hope things improve foryou soon and try not to feel guilty, Katherine xx

 

[Debisfab]

Thank you, Katherine. I think this is Mum's tipping point in terms of accepting outside professional help since she has been resisting up until now. I guess we just need to be patient and wait for an assessment outcome...the NHS is overburdened as it is. Trying to think positively - at least mum is getting some respite whilst dad is in hospital.

 

[britcare4]

Debisfab, don't feel guilty. We are deeply involved with our neighbour who has Alzheimers. Her daughter lives a long way away and she phones us regularly to ask after her mother. the daughter feels guilty at only spending a week at a time once every 3 months here, but she can't spend any more time, she is married, works etc.

Our neighbour has a 24 hour carer living in, from Poland. we have met several Polish carers and they have all been exceptional. Here, in Germany, it costs the family about 2000 euros a month to hire such a carer, would that maybe be a solution? These are legally organised carers, we know one can hire one privately for half that, but one is then in risk of legal trouble.

 

[sanford99]

Hey, lets think on pratical terms here; your dad is in hospitial and your mum has been looking after him whilst he has been at home, but you now thinking he has deteriorated to the extent that she will not be able to look after him properly, right?? Ok, well, that needs to spelled out loud and clear to the agencies you have already involved with your dad, but make special note to contact the CPN or SW that seems to have had most contact with your dad as well as the Nurse in Charge at the hopsital. Explain to your mum that she will have to accept her limitations ' even as a tactic' just to ensure dad gets his needs met once leaving the hospital.

I am afraid you are are going to have think long and hard as to what your mum can cope with at present and what could be put in place to make her life easier. She has needs too, as you are so well aware or you would not be doing the 5 day visit every month....

So, firstly, work out what sort of care plan YOU would put in place for your dad bearing in mind his needs and your mum's ( discuss with your mum, of course) and then see if they are practicable. If they are not, then you need to speak to your mum as to alternatives. There is so only much she can do and she must be getting to end of her rope by sounds of it. I have always found going into to agencies with a clear idea of what I want and what I want to achieve really helps - rather than relying on them for suggestions. If they see you have some idea of what you want and what is required, it does cut through a lot of cr*p....

That is the practical issue.

The other issue is what I can the ' Guilt Trip Train'.....you clearly have no need to be on it; most of us don't ( in fact ALL of us here don't, but it is usually one of, or part of, the reasons why we here in first place!), but dammit, we keep hopping on and reserving our seats. Some of us do manage to throw ourselves off now and again at a platform stop, but sooner or later - usually sooner- clamber back on......

Standing room only on this ride, I am afraid ........so if you can - and I really do hope you can - get off the train; you are doing more than enough and you will continue to do so; you have other things in your life ( we all do) and we juggle every day........guilt is such a useless emotion- gets us nowhere but damn, we seem to love it, we hug it, we carry it around, we take it to bed, we wake up with it in the morning.....it is like Satan's version of the comfort blanket

If there is one thing I would love to banish from all of us here....it is the guilt.......I am one the guiltiest ones.....my husband hates me for it.....but no matter how often he sits me down and rationalises it all for me and makes me see I should not feel this way.....Does it last?? Does it hell! Sigh...think I have a season ticket, automatically renewable; like a lot of us........and we really should not be paying.....

Best of luck, hun.....xxxx

 

[BeckyJan]

Hello and welcome to TP although sorry you need to be here.

This is a link to a factsheet which explains about discharge from hospital for dementia patients. I have quoted one paragraph which I believe relates to your query.

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=173

The hospital discharge process should include:
• an assessment of the person's needs, living environment and support network (see below)
• a written care plan that records these needs
• confirmation that any required services are in place in time for the discharge
• a system for monitoring and, if necessary, adjusting the care plan to meet any change in needs

I hope the hospital discharge goes smoothly - please let us know how you get on.
Best wishes

 

[Debisfab]

Thank you so much

Feeling loads better now and have leapt off the guilt train (for now at least!). X

 

[Grannie G]

Hello Deb

Stay off that guilt train.
You are doing as much as you can from a distance , visiting regularly, being in constant touch while trying to keep your own head above water at the same time.
Your concern is obvious.
Your mother will have to be able to make painful decisions in her own time, even if it is detrimental to her health. She also needs to be able to feel guilt free.

 

[RedKite]

Hey Deb,
Your predicament is ringing so many bells with me that I could not believe the similarities!
Prior to the summer holidays I have been travelling up and down the ruddy M4 for 3 or more hours every trip, more or less every other w/e and school holidays to support my Mum who is Dad's carer, and also my brother and his family who live nearby.
Working in a school I have spent most of the school holidays living with my Mum, supporting her through surgery and Dad's respite care in a local home. Various crisis have ensued and though we have all done our best to make the best of a horrible situation you can't help feel guilty if things aren't working out.
Now schools are going back I am dreading returning to what is a very stressful and challenging workplace. I have visited the GP for myself and she was very supportive - if I need time off work I just need to ring her up, she knows I'm not swinging the lead.
Guilt is a very destructive feeling and we are mere mortals doing the best we can.
What can I say? Sharing your worries is taking positive action, even if none of us can wave our magic wands we can empathise. We all do.............in bucket loads

Take care,
Sue x

 

[suze40]

Snap!

I too joined this week and I really feel for you because I have been struggling with the same feelings of guilt because my father is over 250 miles away and being cared for by my brothers whereas I am trying to help whilst living a long way away, working full time and building an important new relationship which makes me very happy.

I can only suggest that you try and do as I am am doing to find other ways in which you can contribute to help the situation by going down and see your parents when you can as well as doing things from afar including helping to sort out admin issues/finances. It is also worth doing what the Alzheimer's Society advise (but we have not yet done) which is to get the family together and work out what you can each offer in terms of support bearing in mind that you will each have different skills and preferences and can contribute in different ways.

Good luck!

 

[Bron]

I know how you feel and can sympaphise, my mother is in a home 120 miles away and I wish I could do more. I go down once a month and take her out somewhere for the day, I would love to bring her to my house for a couple of days but don't think that I could cope. I would be so worried if she didn't want to go back, or even a long drive might be too hazardous. People have told me that I couldn't do anymore for her, as previous to her going into a home I was visiting most weekends, and finding it exhausting. She is happy where she is and the home is a lovely place, but that doesn't really help. You can only do what you can do. I have a friend who was a sole carer for her mum who has sadly recently died. My friends health is at breaking point as she has had a serious illness as well. Feel free to chat again

 

[Debisfab]

Guilty as hell...an update....more emotions...

Thanks to everyone who has replied, it is such a comfort to know that there is a whole community of people out there, all coping in different ways. Since my last post, Dad has got worse and is being assessed for whichever home is appropriate - there is no way that Mum can cope with him. He has gone down hill so rapidly and can't walk, eat, toilet or recognise anyone. He had to be sedated at the weekend since he lashed out and hit a nurse....boy, do we all feel bad about that....their job is hard enough as it is.

I'm going down this week to take over at the hospital and give mum and sister a break. I'm taking some Bach Flowers rescue remedy to prepare myself for the shock of seeing him. I'm also taking some 'toys' for him to use since he is fidgety - anyone got any ideas on this one?

My emotions are rollercoasting from sorrow to anger at the moment. I've been taught how to do Emotional Freedom Technique (tapping meridians on the body to release emotion - try it - its on the web - it does help!).

Other coping mechanisms...cycling (also burns your cellulite , vodka and tonic, retail therapy, screaming in a field....any more ideas on this one?

This is such a cruel illness with no apparent time line. We are all doing the best we can with it....