Feeling Alone

[Ionna]

Thanks for the replies to my last post. Mum is still holding food and liquid, but the DN think is it related to the dementia - thankfully no infections reported.

Don't suppose there are many people awake at this time. I should be asleep myself knowing I have another day ahead of taking care of mum but there was no point me laying there in tears so I thought I would just exhale a little if you don't mind.

Really feeling the strain of being a full-time carer for my beautiful mother. Seeing her deteriorate before my eyes is hard. Each morning she tells me she is sick and that she will be gone soon. This makes me very sad. As well as the dementia blocking her eating, drinking, mobility (I could go on) her cancer tumour is also growing at a pace and the 30mcg of Butrans + Oramorph is having little impact. I hate to see her in so much pain. She can still make me smile though and for the past 3 days has stayed awake until after lunch and is extremely alert which has been wonderful.

My biggest stress at the moment is not my mother, but the stupid agency that have been taking care of her The carers themselves are good, but the agency are a complete shambles and constantly lie about everything. Our main carer is ill at the moment and it is clear that the agency do not have enough people to cover. This is getting me down. Tonight has been the final straw. It is the 3rd time someone new has come in on the evening shift and the 3rd time that mum has not eaten. I was promised that the carer that came this evening would cover until the regular girl came back to work. Upon her arrival the new carer told me that she will only cover tonight and Saturday and I have no idea who they are sending tomorrow.

I'm so tired. I've strained my wrist moving mum and trapped a nerve in my back earlier this week. The Dr has given me valium, but I don't want to begin relying on drugs to get through the day. Just some reliable support would do. Don't suppose anybody knows where I can find a good care agency that can deliver what they promise in the Surrey area?

I know that this is not going to get any easier, but I can't really talk to my husband or family about how I feel. There is so much bottled up I think I may burst anytime now...I think I should go to sleep now and save my energy for the morning. I'm going to need it!

Goodnight x

 

[Kevinl]

They'll be plenty of us around and about even at this time of night if it's one of "those" nights when bed isn't an option. You just have to remember that it isn't forever and tomorrow's another day, you're not alone.
K

 

[crazyhorse]

Wow girl you really are having the kitchen sink thrown at you, im not surprised you are finding it difficult anybody would. Im new to this disease but im sure your local altziemers association can help you with carer services in your area and also help you vent your emotions by putting you in contact with people who have or are also trying to cope with this horrible disease. With regards to your mums cancer I am assuming you are in contact with pallative care services, they can be of great help and support.
Finally whatever you are feeling, from experience in the world of MND you will not be the first to have whatever thoughts you have about your situation, I believe talking helps but thats an individual decision, not everybody likes this route. There will be someone who you can connect with its just the finding of them that takes time.
You are not alone remember that.

Take care CH

 

[Tin]

It does seem a shambles that we have to go through agencies to get the help we need, any chance you could advertise for an individual to help you? of course with just one there is always the possibility of illness and time off, but if you know you can cover the 'emergency' gaps, you would have the benefit of continuity from the same person. At moment, I do not need that kind of carer service for my mum, just someone to sit with her when I need to be alone or meet friends. I found the sitter through a private ad and so far its working, I pay no more than an agency would charge me and the sitter is getting slightly more per hour as no percentage going to agency.

 

[Oxy]

I would welcome this Tin even though have a lovely lady through agency. I don't want to put all my eggs in one basket after so long without. Paperwork associated with going privately puts me off. Is it very arduous?

 

[Tin]

Maybe I have missed something here, but because I did not need a trained carer, all I did was apply for CBR check, The sitter already had one that she had organised, but I was told that each employer should apply for one. When mum is having a bad day I don't go out she helps me or mum to tidy up around the house, but her main job is to 'sit' with mum and look at photos, just listen and smile while mum is telling her strange stories. Before I found her she was house cleaning and was looking for something less physical. 3 hours a week at moment, but I am hoping that she will stay with me and do more hours when needed. She does have one other job, a school pick up and so far we have not clashed she is self employed so not much paperwork, although we do keep a daily diary, just so we are both up to date with everything. We are both learning on the job.

 

[Ionna]

They'll be plenty of us around and about even at this time of night if it's one of "those" nights when bed isn't an option. You just have to remember that it isn't forever and tomorrow's another day, you're not alone.
K

Hi Kevinl, I hope you are keeping well.
Today I'm feeling better. Good to know there are people around 247 . I keep reminding myself that it won't always be like this but then I get scared. I don't feel the same about life anymore. I don't mean that in a morbid way, it's more that I see and react to things differently. This whole experience so far has changed me and I wonder what I'll be like when this chapter closes...I do realise that I have been doing this for a short time, but it has been intense.
Tomorrow is another a day so we must all keep pressing on.
Thanks for the chat

x

 

[Ionna]

Wow girl you really are having the kitchen sink thrown at you, im not surprised you are finding it difficult anybody would. Im new to this disease but im sure your local altziemers association can help you with carer services in your area and also help you vent your emotions by putting you in contact with people who have or are also trying to cope with this horrible disease. With regards to your mums cancer I am assuming you are in contact with pallative care services, they can be of great help and support.
Finally whatever you are feeling, from experience in the world of MND you will not be the first to have whatever thoughts you have about your situation, I believe talking helps but thats an individual decision, not everybody likes this route. There will be someone who you can connect with its just the finding of them that takes time.
You are not alone remember that.

Take care CH

Hey CrazyHorse,
Nice to meet you. What were you doing up at 4am?? I think last night everything just got on top of me.
The local Alzheimer's office has reduced it's staff. We used to have a fantastic lady who I could contact anytime. There were only 3 people that covered the Croydon borough. Due to funding issues they have now cut that to 1 person. It doesn't seem right. They are not allowed to recommend any agencies, but sent me a booklet with a list at the back, which I went through and the agency i have where one of the few that had good reviews from it's staff and other clients.
Coping with one horrible disease is one thing, but I've noticed that whenever I mention the fact that mum has 2 you just that look of poor you...and people don't know what to say so they'll end the conversation with "good luck".
I shouldn't complain too much, I'm only a spectator in this process - my poor mother is the one living with it all.
I do feel better for getting things off my chest.
Thank you for responding. Let me know if there is anything I can help you with. xx

 

[Ionna]

Thanks Tin and Oxy,
It would be worth either trying to find 2 agencies or go private, but would definitely want to avoid the direct payment route. At the moment we have been lucky enough to qualify for NHS continuing care (it's definitely worth investigating if you have not tried it already).
Not sure I can have someone private unless they are part of the CQC process - not that I rate the CQC website...it seems that with the criteria they outline - anyone can get a certificate to say they have passed it...
Take care x

 

[crazyhorse]

Hey CrazyHorse,
Nice to meet you. What were you doing up at 4am?? I think last night everything just got on top of me.
The local Alzheimer's office has reduced it's staff. We used to have a fantastic lady who I could contact anytime. There were only 3 people that covered the Croydon borough. Due to funding issues they have now cut that to 1 person. It doesn't seem right. They are not allowed to recommend any agencies, but sent me a booklet with a list at the back, which I went through and the agency i have where one of the few that had good reviews from it's staff and other clients.
Coping with one horrible disease is one thing, but I've noticed that whenever I mention the fact that mum has 2 you just that look of poor you...and people don't know what to say so they'll end the conversation with "good luck".
I shouldn't complain too much, I'm only a spectator in this process - my poor mother is the one living with it all.
I do feel better for getting things off my chest.
Thank you for responding. Let me know if there is anything I can help you with. xx

Hi Ionna, unfortunately im not sleeping that well at the moment, just had a shoulder op which is disturbing my much needed beauty sleep. Glad your feeling a little better, its good to talk, try not to let it build up too much, its not good for you and definately not good for your mother, she needs you in good fettle, your relationship with her is probably one of the few things that bring happiness to her day, she is having to cope with a lot, strong woman!
Its a crying shame when charities have to cut back but you have to deal with the hand you are dealt, as **** as it maybe. I see you have had other replies perhaps there suggestions may help. Otherwise just keep shouting until someone notices, the broader you cast your net the greater the possibility of finding an answer.
Its hard trying to shout and care and look after your own family, but when you can and if you can take up offers of help to ease the load your carrying.
My situation is at the beginning of the dementia journey, things are OK, my FIL is slightly confused at times and pretty forgetful about daily matters but nothing to arduous.
Im always here for a chat so feel free, take care CH

 

[angelface]

Hi Ionna,
Have you tried the macmillan nurses or your local hospice? When my dad was very poorly with cancer they provided night sitters. May be worth asking if they still do, the macmillans I mean.
The hospice nurses were wonderful, and will visit, your mum would not have to be an inpatient.

 

[Oxy]

Hi Ionna,
I sorry that you are finding it so hard with carers. Angel face is correct to try Macmillan nurses. Have you tried Marie Curie-don't know whether they do carers/nurses?
I do hope that your mum gets her pain reduced-can the medics not increase dosages or use alternatives. Macmillan are supposed to be very good re palliative care.