A living hell

[Faith]

Three weeks ago my father realised he could no longer cope and he asked for help. It has been hard for my sister and I to help mum because my father is very strong willed and vowed he would look after mum until he "had no breath left in his body". He shut us out and asked us not to discuss her illness with family and friends. She went into the first home he looked at for 2 weeks respite care and the day she went my sister and I went with him and he broke down and cried. It is now nearly four weks since she went in and he does not want her home. She has been put on sleeping pills and she sings all the time - the same tune. It is so awful. She has lost weight and I have seen the portions..........not enough to maintain her weight. She is gaunt and when I took her out on Friday there was excretia in her eyes. She smells so bad too. My father went yesterday and she had it in her finger nails too. My mother has had a terrible problem with her bowels all her life and regularly ate bran, until they diagnosed coeliac disease13 years ago but , forgot to tell us until 3 years ago. Dad had to give her enemas every week otherwise she was a mess with total incontinence of the bowels 24/7. I don't know how he has coped.

My father does not want to complain because he can not cope with her and is terrified to say anything in case they ask him to take her home. They have no savings to speak of only the house. He has no power of attorny. the whole thing is a mess and to top it all I only have to forget one thing and I think it is going to happen to me. I guess I can relate to a message on here about running away.........I want to get in the car and drive. I usually cope OK but today being fathers day I wanted to love my dad, but all I feel is he has been with mum for 50 years and then he has just pushed her out without making sure she is getting the best care. He would never take the help offered at home and yet all of a sudden he can't cope and mum is OUT. Please don't tell me to talk to him, my father will not accept that my sister or I have any feelings on this because we are not married to her......we are only her daughters.

Maybe when the sun comes up tomorrow things will seem a wee bit better.

Thanks for being there.

 

[Amy]

Hiya Faith,
Welcome to TP. Sorry that things feel so bad at the moment.
My mum has been in a Nursing Home for 5 months, my dad too got to a point where he could not cope - but that was so hard for him to admit. My brother and I had to take responsibility for the decision, to ease his guilt. Your dad will be feeling guilt ridden, but also relieved- and that relief brings added guilt. He needs your support. I appreciate that this may be difficult if he is closing you out. Try not to view it as "pushing her out" - he was obviously in a desperate position himself - even if partly self-inflicted by not accepting your help.

Has the decision actually been made that your mum is staying in the home? Are there other homes nearby that might be an option? Have you spoken to the Manager at the home about your concerns? I think that it is best to try and work co-operatively with the home, rather than complain - so express concern initially, talk to them about your mum's care plan. Do you have a CPN or Social Worker involved, could you talk to them?

The state that you are in at the moment you are going to be forgetting everything - so don't worry!! We all do it.

we are only her daughters

and what desperate feeling us daughters have. We should be able to care for the person who cared for us and gave us so much. We feel responsible for both mum and dad's happiness. We should be able to stop the hurting. But we can't. Faith, all you can do is your best.

Take care, and post whenever you feel like it.
Love Helen

 

[Faith]

Thank you

Thank you Helen for your kind words....they mean a great deal. I guess that doing our best, is the best we can do, with this wretched illness.

Faith

 

[Helena]

Faith

I trust you have been tested for Coeliac disease because its hereditary
My 5 yr old grandaughter has Coeliac and we are pretty sure its come via my Mother as is Great Ormond St who has had digestive problems all her life (but theres nothing wrong She says !!!!! )
Neither I or my daughter or my sister etc have it so its skipped a couple of generations
I have a firm belief that undiagnosed things like Coeliac /thyroid etc all contribute ultimately to some other breakdown in the body

To my mind my Mother has caused her own Dementia because she has always refused to accept "we are what we eat "

 

[Michael E]

Faith hi,

I am a long long way from not being able to cope and probably a bit younger than your dad although it is some 45 years since Monique and I got married... I can sort of see that there is a moment when you just want to quit... Just do not have the emotional strength to carry on... The drudgery of it all can be quite wearing however optimistic you are... And the rewards are pretty small. I was washing '******' sheets, dressing gown and knickers what seemed like all day yesterday - actually cooked a meal instead of a salad and was told it was horrid - probably not to far from the truth but I ate it!!!

I think it must be very difficult for homes to cope with the incontinence - bowel problems. AD patients seem to not see excrement or worry about it... Hell - why not - it happens all the time... There is a lot of it around as I am learning... It is sad for your mum - maybe there is a better home somewhere - maybe you can talk to them but I think your dad's fears may be well grounded - frightened they will send your mum back... Your dad has thrown in the towel - he has fought as hard as he knows and now has had enough... It would be a killer to have to go a few more rounds when your heart is not in it... He has been so brave, so loving by the sound of it and now is perhaps the time to let him have a bit of freedom - life of his own??? Not sure - I don't know much... Such a rotten illness..

Be as brave as you can be and I wish you luck


love

Michael

 

[Kathleen]

Hello Faith

I think you should talk with the home staff and voice your concerns about your Mum.

Apart from anything else, she could contract a nasty infection which would probably spread to the other residents and staff.

Maybe, under the circumstances, you could confide in them and bypass your Dad, as he will be feeling terrible for not looking after her himself.

Has she been looked at by a GP lately, if not, maybe a visit could be arranged and if you were present at the visit, you could go over her previous health problems and come up with a better care plan for her.

Above all, remember your Dad and Mum love you very much, maybe your Dad was trying to protect you and your sister from getting hurt when he tried so hard to cope alone, for a strong man, it must have been a dreadful decision to let her go elsewhere because he could no longer manage.

Hope the situation improves for you all very soon.

Kathleen

 

[Tender Face]

I don't know how he has coped.

Faith, great you can acknowledge that and I sense a great sense of respect there. It's tough feeling 'shut out', but perhaps you can see that that was/is your dad's 'coping mechanism' - including protecting you (?) - doesn't make it any easier on you just now...... but perhaps that 'coping mechanism' just got a little worn...

Do you/your dad have support for mum for the Coeliac disease alone? (Specialist nurse type?) Perhaps they need to be involved in determining the 'total care' needed now.... including supporting all of you as a family and your individual concerns as well as those most pressing for your mum........

With love, Karen (TF)

 

[rummy]

Hi Faith,
My Dad is wearing thin with my Mom. It isn't so much what he has said but what I sense. I think it is only a matter of months before my Mom will go into a nursing home. My step Dad isn't all that healthy himself and I am pretty sure he has very early dimentia, probably vasular because his judgement has been really wacky lately. My Mom is in stage six AD and usually doesn't know who he is anymore and thinks strange men of all sorts keep coming into the house. He also has many bowel accidents to clean up on a regular basis.
I am beginning to check out NH's so that when the time comes I will have a direction and idea of what is available. He is either going to keel over one day and it will be upon me or he will just call me and say he can't do it any more. I am not at all sure that my Mom will do well living with me either. I back up to rural woods and a pond and she is starting to wander. She is also up all night and is terribly confused and scared all of the time. So sad to see her in this tortured state!
I don't blame my step Dad at all for giving up. You fight a good fight and when the time comes, acknowledge that you can't do any more.
At any rate, it sounds like it is time for you to step in and deal with your Mom's conditions. Your Dad for what ever reason just might not be able to.
Take care,
Debbie