Feel like I am drowning

[Cerinthe]

Nearest admiral nurses location is 30 miles away sadly.

Am I alone in feeling hesitant in reaching out for help. My experience so far has been that we reach breaking point....contact GP or adult care team and then get passed from pillar to post. I can’t keep track of how many teams, who is who, different names, rapid response, crisis, support network, adult care, mental health, community mental health, CPN, carers support, carers support worker.... I no longer know who is part of a charity or who is council or NHS and each seems keen to refer us to another team and the end result seems to be that people fail to ring back or arrive when expected....then when they do they make suggestions which are unhelpful or just tell us to consider nursing homes. I think a nursing home would solve it for them.

Mum will go downhill rapidly and be very distressed. Dad would feel guilty and depressed. Finances would be a big concern.

Having said that it is on my list of things to do in my holiday ...investigate homes.

[Cerinthe]

CHC help might be good when I have the energy to tackle a fight.

Given your present caring situation , how long before that alternative becomes paramount ... could even be tomorrow ?

We all know that one's caring role can become intolerable virtually overnight ... with no hope of improvement as our caree's
condition worsens

My previous response was before I read this.

I agree with this

[Cerinthe]

Actually I think I need to start a diary which logs everything. It all seems so chaotic and I don’t have answers quickly. That might help me

[Chris From The Gulag]

Several on this forum would agree with that , Lydia.

AGE UK ... might be to your advantage to make contact ... at least they are on the front line.

Your situation will probably be meat and drink to them.

When one is " Drowning " , one tends to look at all possible alternatives ?

[bowlingbun]

Definitely start a "diary".

I would suggest a ring binder with dividers, one for Doctor, hospital consultant, social services.
On the front of each divider write down their name, address, and telephone number. Also their rank, i.e. student nurse, ward sister, district nurse.
Record the date and time of each call, who you spoke to and what was agreed. If they gabble their name or don't give their surname, ask them to repeat it, I now say "don't you have a surname" if they only give a first name.

[Linda_1503]

I agree with the ring binder folder.....you would be amazed how many times I have had to cross reference back to it for info.......Keep everything.

I have a old fashioned Filofax which I carry with me at all times that lists all her medical ailments, any operations she has had and when she was diagnosed with each problem. Also stuff like when she gave up smoking , her weight and height.....all of which they ask when she is admitted to hospital

I found as well you do get referred to a lot of services that are no use what’s so ever ( I’m sure they would suit some people) but when we where offered a charity befriending service it seemed like a brilliant idea until they explained that they didn’t do “dementia” and couldn’t help with toilet duties and since my mum is blind and has Parkinson’s dementia there was no way I could leave the house for a break so I declined.

It is difficult because on the one hand your screaming out for help but on the other your butting your head against a wall with what’s out there.....

[Chris From The Gulag]

Welcome indeed , to the harsh reality of CarerLand , Linda.

One link you will probably use already ... the leading charity for Parkinsons Disease :

https://www.parkinsons.org.uk/

[Cerinthe]

I found as well you do get referred to a lot of services that are no use what’s so ever ( I’m sure they would suit some people) but when we where offered a charity befriending service it seemed like a brilliant idea until they explained that they didn’t do “dementia” and couldn’t help with toilet duties and since my mum is blind and has Parkinson’s dementia there was no way I could leave the house for a break so I declined.

It is difficult because on the one hand your screaming out for help but on the other your butting your head against a wall with what’s out there.....

Yes! Exactly this

Raising expectations only to dash them is worse than getting nothing

[Tim_1907]

"Am I alone in feeling hesitant in reaching out for help. My experience so far has been that we reach breaking point....contact GP or adult care team and then get passed from pillar to post. I can’t keep track of how many teams, who is who, different names, rapid response, crisis, support network, adult care, mental health, community mental health, CPN, carers support, carers support worker.... I no longer know who is part of a charity or who is council or NHS and each seems keen to refer us to another team and the end result seems to be that people fail to ring back or arrive when expected....then when they do they make suggestions which are unhelpful or just tell us to consider nursing homes. I think a nursing home would solve it for them.

Mum will go downhill rapidly and be very distressed. Dad would feel guilty and depressed. Finances would be a big concern.

Having said that it is on my list of things to do in my holiday ...investigate homes."

Reading this with interest and genuine concern, for what that's worth. The problems we are both facing is manifold. A lack of coordinated resources and focussed help. The overwhelming sense or hint here and there that those purporting to offer help are simply pushing you and me and others onto other people, passing the buck no less. The great difficulty of knowing what financial aid is available in these dire and often very grim and severely stressful situations, the stress of having to aggressively and actively pursue all any help, like the proverbial desperate man grasping at any straw, when we don't want to get out of bed ever again and are very probably sick to the pit of our stomachs with stress, have a massive stress lump in our throats and are on the verge of tears, and feel like we are going loopy, too. Equally, the stress of people who have worked hard all their lives and have some savings having to spend all of that on a few years of care, not knowing what happens after, or the other side, a person such as myself who has struggled with long term health conditions including depression and twenty years of chronic fatigue syndrome, not knowing what help might be available or if I have to pay (or we have to pay) for care with our meagre resources.

First off, I now have accepted there is a problem, it's not very nice, it's quite stressful and it's unlikely to get any better. Secondly, I have gently but firmly hassled, begged and cajoled my Drs and the ambulance workers who have come to give me help and advice and anything practical. Thirdly, I also accept that stress will come but try not to get angry at things out of my control. Acceptance has to be a key here. Fourthly, I have accepted that my pattern of living is for the time being on a completely ad-hoc and moment-by-moment basis. As of now I'm typing this at half 5 in the morning because I slept exhausted throughout half the day. Not ideal, but at least I got some badly needed sleep. Fifthly, I love my mum and I told her yesterday I loved her and she said she loved me. I remember what the core of this world should be about, love and care and practical concern for others, even though many of us are surrounded by seas of apathy, disinterest and even malice, sometimes even from our own families and 'friends'. And finally, and not least, I pray for help. The other night I was so severely stressed and ill with worry I was beside myself. I've never felt such stress. Today, I feel better. Not great, but better.

I wish you well, and pray you get some concerted and practical help. Don't give up. Keep asking. Beg if you have to. Don't even worry about the money situation. These things can and do work out to the advantage of all.

God bless.

[Tim_1907]

Cerinthe

I am now getting my mum into respite for a month with a view to getting her into permanent residential care.

I was simply honest with my Dr, he got an emergency team out 4 times a day, still coming, until she is placed there.

I pray you get some concrete help along these lines.