Coping Mechanisms.

Archeron

Hi all, a small rant, a rantlet, if you will, with a question at the end....

I myself thankfully do not suffer from any longterm illness and I think I am in relatively acceptable health. However, I have cared for my mum for a long time, (app 15 years now) as her health has over time deteriorated and more and more problems crop up which we have always dealt with as best we could. Needless to say, having done this from the age of 15, her illness has always been a big part of my life.

Four years ago, I decided that the best thing for us all was to move out of Dublin, buy a nice house where she could retire, and I (outside work hours) could still be close by to help with what needed to be done. I am still happy about that decision.

Over the past couple of weeks though, her health has become such an issue that I now can quite clearly see what the future holds in relation to her long term care. Without being crude, every aspect of her personal wellbeing and bodily function requires extremely hands on help and assistance in order to happen. While I am relatively familiar with helping her in quite personal ways, the levels we are at now are unfamiliar, uncomfortable and disconcerting.

I have found that now I am dwelling on this a hell of a lot more, and it is making me into one grumpy person. Its began to affect my relationships with colleagues and coworkers, its began to affect my friendships as I dont want to do anything with my free hour a day other than relax, and its made me grumpy towards even her. It kills me to snap at her, but I really feel I cant help it as the prospect of what we currently endure continuing for the foreseeable future makes me very concerned, for me and her.

I know there are people there to help us, and she does have a carer who comes once a day, but even what she can do is limited. (I have some strenght, as does my dad fair play to him, the lady carer does not), so that means a lot of what has to be done, has to be done with strength, which is us.

When things look bleak, and the answers you crave are not forthcoming, have you found yourself in the same frame of mind? How do you deal with it?

A lot of people suggest options for us, but the unique selection of illness's from which she suffers is one in a million. Even her specialist in the hospital told us that he discussed her with his colleagues, and they agreed that it is one of the most unfortunate cases of combined illnesses they have ever seen.

I suppose this is a mini-rant. I know so many suffer so much worse and still keep a smile to the fore, but lately, its all becoming such a heavy burden. How do we deal with these things?

Apologies if I sound like selfish ass, but this is one subject I really would love to hear other opinions on.

DrIndy

You can increase home supports through the home care grant which can help you, there is also a growing (but very small) trend for a live in carer, although this cost is above the maximum home care grant - still there are options out there to help you.

Being a carer is tough - very tough. I am amazed at the families who help their parents to such measures when sick and have utmost admiration for them. You are one in a thousand and you should be very, very proud of everything you are doing even though sometimes it doesn't feel like that.

Finally - you can arrange respite where your mum is admitted to a nursing home for a week or two every once in a while to allow you to get a break or a holiday. This is very important for you.

DawnMc

I hear you. Going through a similar situation. I think it'd be great if there was a support group out there.

The_Conductor

There is a support group- The Carers Association of Ireland. Website here.

Hope this helps,

S.

Odysseus

You don't sound selfish at all you sound like a human being having mixed emotions about you very difficult position. Its like you are frustrated anf fearful about your mothers illness getting worse and the impact it is having on you.

As you noted it is now having an effect on your quality of life, your relationships etc. I'm not a carer but my parents OAPs and my dad has gone from the hulk of a man he was when I was a child to being quite febble. I have very mixed emotions about this I understand he is sick, but I also feel he has given up and at times I am ashamed of him for that, which in turn provokes a sense of guilt in me. How could I think like that about my father, but the fact is I do, and that is ok.


So what I'm saying is its ok to be having mixed thoughts about the people we love, but its our responsibility to negate or at least limit the impact they have on the relationship. For example its not ok for my shame to negatively effect the last bit of my relationship with my dad. It is my responsibilty to ensure that this happens, whilst acknowledging to myself my own thoughts.

I would suggest that you get some support around you, friends, maybe the carers ass. can help to, or personally I would suggest some therapy, with the aim of using it as a support where you can speak your mind without being judged, just heard. Hope this makes sense and helps a tad.

Archeron

Thanks for your ideas everyone, and thanks for enduring my rant.

I was onto the carers association, and it was good to explain to someone exactly what we are going through. Sadly, although they are able to listen, the actual aspect of helping us is beyond them. Lovely people though, and they did suggest some alternative numbers to ring.

Since my original post, things have gotten, believe it or not, worse still. I have spent my entire morning trying to get through to somebody who can help us. (I know I'm going to get fired soon) 3 messages have been left for our GP, and he refuses to return my calls. The local health nurse only accepts calls before 8.30 in the morning, (i forgot that fact) and the general number for the HSE in my local town is just ringing out. You would think they would at least put a flipping voicemail in service on a number like that.

Mums catheter has fallen out and wont stay in so she is currently sitting in a bed damp with her own wee. We phsically dont have the strenght to do anything about this. She is being reduced to living like an animal, and we are so sad to not be able to help.

Our hearts are breaking, our emotional states are beginning to fail, and I pray that we can find a way out of this.

The_Conductor

Sorry to hear that things have deteriorated even further. Unfortunately you may be at the stage where you have to accept that if home help/assistance/respite care is not available, that you may have to face to possibility of what the alternates are, and contemplate moving on to the next stage.

I do think that it is ridiculous that the HSE aren't even answering their phone- I can only imagine how frustrated you are.

Hopefully some other posters here may be able to come up with some suggestions for you.

Best wishes,

Shane

_Whimsical_

I'm really sorry to hear you and your family are having such an awful time at the moment . For what it's worth I don't think that you sound selfish at all. Quite the opposite infact. You sound like you are a very giving and loving person and that you really are doing the very best that you can in very difficult circumstances. I actually think you sound quite heroic. It's perfectly natural that you are stressed and frazzled (I don't know how you cope at all). It's also normal no matter how much you love your mum(and you really sound like you do love her alot) that you resent the awful situation you find yourself in. Maybe going to a counsellor might help? You sound like you really need and deserve some time for yourself and a regular release valve with someone who would be solely focused on supporting you. I went to a counsellor once when life was really difficult. I was in a situation somewhat simmilar to yours in that I couldn't escape it or do anything about it. It didn't change any of the material facts of my life but being able to talk to someone and say things I felt I couldn't say to anyone else made me feel much less stressed out and in turn much less claustraphobic in the situation. The different perspective helped me find new ways to cope too. Sometimes there's not alot you can do but find ways to cope. You might feel you're too busy right now but it is worth it. I wish I could think of something else that might help you.

Archeron wrote: »

Its began to affect my relationships with colleagues and coworkers, its began to affect my friendships as I dont want to do anything with my free hour a day other than relax

Tell your friends and some co-workers that you're under alot of stress right now. People often don't understand and take it personally when you back off from them or become snappy. If they know where you're coming from it might help. It's important not to become too isolated even if at the moment you don't have the time or energy for friends and being social.

Good luck and I really hope things improve for you and your mum .

jos28

I agree with McCarrick that you may have to start looking at the alternatives. That is not to sound negative but you have to be practical. I have looked after my Mam for the past 10 years. 3 years ago our district nurse suggested putting Mams' name down for a nursing home place. We were shocked at her suggestion and told her in no uncertain way that this would never happen. Well, in May this year it did happen. Mam moved into a nursing home and it has made a huge difference to all our lives. It was the hardest thing I have ever done but it has worked out really well. She has professional nursing care 24/7. She has a social life, new hobbies and friends, and she is happy. I never realised it but whe was lonely at home despite all our efforts. I still see her every day, I take her out 3 or 4 times a week.
I can enjoy her company without feeling worried or stressed and feel very lucky to have this time with her. I suppose what I am trying to say is that as carers our skills are limited. There comes a time when you have to stand aside and let the professionals do their job.On a more practical note, in my experience all help begins with your district nurse. They are your key into the system. Whatever help is available will come through you district nurse.
Take care of yourself, I wish you well.

Archeron

Thank you Jos28. your post sets my mind well at ease as we have began to discuss the realism of her needing full time care now. I was worried about how she may be in a care place, but what you say about friends and hobbies is inspiring, as she is a very sociable woman who can make friends very easy.

When this option is one to be considered, do you have any choice in the care home that she would go to, or is she just sent to whereever there is space? We have a care home in our town, which would be ideal (and I hear is a great place), but I fear she could end up in a place hours away from us.

Also, (and sorry to ask like this, I know the nurses will tell us soon), are the costs involved high? My mum is a full medical card holder, but I have heard that even with the med card, it can cost up to €1600 a month.

Thanks again for your advice, and to all in the thread.

jos28

There is a distinction between private and public nursing home care. You can get a place in a private home fairly quickly if you are prepared to pay for it. Private homes occasionally allocate contract beds to medical card holders.These are paid for by the HSE. The alternative is a public home, mostly paid for by the HSE. The allocation of nursing home places is up in the air at the moment. Mary Harney has promised us all the "Fair deal for nursing homes scheme". This basically means that everyone will be treated equally.It means that you choose your nursing home, you pay 80% of your earnings towards your care and the state pay the rest. When you die, the state then claim 5% of your estate.(If you have anything). I personally think it is a good scheme. But the bad news is that it not ready yet. It was due to start in Jan 2008 but according to the Dept of Health, the legislation is only with the Attorney General now. God only knows when it will come into action. The helpline number for the scheme is 1850 241850. But you are not in a rush so it might be all up and running when you need it. We desperately need the scheme. My Mam is in a private home costing €850 per week. Her funds are running out quickly. So here's hoping...
My advice to you would be to talk to your district nurse, put your Mother's name down. It usually takes months if not years to get a bed. Even if they do find a place, you don't have to accept it immediatley. You can always defer it. Best of all you would have a chance to see what is available without involving your Mother at this stage.
Feel free to PM me at any stage.