Mum has the wretched illness and I just sometimes wonder how my brother and I are going to keep ourselves together to enable us to be there for her in her despair and frustration. Where to find the energy and staying power!!!
Hang on in there Hugh! You and your brother are doing an excellent job in your role! If its any help I know exactly what you will be going through as myself and my family are going through the same with my Grandmother.Important thing is to look after yourselves too.Neil
The problem I find is that we are all watching helplessly as our loved ones are in the grips of a disease that has no rules.
The symptoms are random and cruel. There is no timescale to work to. There is no absolute pattern to it. There is no way to even guess what will happen in the next few hours, let alone days or weeks. We can, therefore, not make plans, or decisions for ourselves or our loved ones.
It is exhausting emotionally and physically for all concerned and there don't seem to be any rewards or time off for good behaviour.
All we can do is try to have some time for ourselves even if it is an hour or so, to relax and unwind a little, so that when we are needed again, we can put on our smiles and do our best to be supportive.
I don't know whether you are getting any help or support from other sources - have you got a CPN (Community Psychiatric Nurse) and/or Social Worker allocated to your mother. I looked after my husband for some years, and the CPN was a great source of practical and moral support and advice. The Social Worker was not quite so helpful, but did get the Care Assessment of my husband's needs and a Carer's assessment done for me (you are entitled to these, by the way) - a first step in getting things like respite or day care. I understand from previous postings on this forum that it can be the other way round, Social Worker good, CPN less so, but your mother's GP or Consultant should refer you to these services.
Also there are voluntary organisations that can give advice or provide a sitting service so that you can at least have short breaks. Your local Alzheimers Society branch should be able to put you in touch with these.
At the very least, do keep in touch through this forum - it was a real life-saver for me, as you can ask anything or just sound off when it all gets too much, and everyone will understand, as we have also been there.
you are indeed fortunate to have a supportive brother.
You have some one to talk with and discuss problems,for one of the killers in this situation is isolation and lonliness.
Do follow the advice already given previously about help from Social Services etc etc.
Stay strong you are both doing a grand job
Dear NeilJR, suem, Kathleen, Ruthieand Norman,
Thank you all for giving us our first feeling that we are not as alone as we have felt up to now and in fact for over 5 years. We feel no longer alone thanks to you lovely people and all the other lovely people out there with Talking Point. We and Mummy are lucky to have access to such a brilliant facility - together we WILL get through this nightmare. Bless you again for your kind response we will keep in touch. Meantime our thoughts are with you all in your own individual situations. Hugh and Andrew