I'm Falling Apart

Cucu Mzungu

Registered User
Nov 11, 2011
63
0
London
You just can't do it...nobody could...

I hope it all gets sorted very soon You seem now to have people on your side. It seems to me that you can either give up caring in a massive way for your Mum after you become ill or instead of becoming ill...And since you have others depending on you...and since it looks like it's going to take more than one person to keep her safe I think you need to get yourself out of it as soon as possible.
 

MJay

Registered User
Sep 2, 2011
7
0
Staffordshire
Hi everyone.

I'm a little bit shocked again. :D

I received a call from a SW, he said they have set in place the SW team that will deal with us from now on. A female SW will come to mum's in the morning to do an initial care assessment. He said to me that he'd spoken to mum and asked how she was, what she had been doing today so far, and explained about the assessment. He said, "She isn't keen on us being involved, which is normal enough." I agreed, mum being raised by her Victorian grandmother, made her view SS as 'charity for the hopeless', as her gran had once worked in a poor house, run by the then equivalent of modern SS.

Anyway, he said she is an extraordinarily polite lady and dignified lady (I didn't have the heart to tell him that one trait I inherited from mum was being overly polite when I'm angry - the nicer I am, the faster my kids skedaddle! :D ). She also told him about the housework and shopping she has done today :rolleyes: My heart sank at hearing this - then comes the shock "However, I have been a SW for more than 30 years, specialising in dementia care, and it was obvious during the call that she has very limited reasoning, and I'm sorry that it has taken this long for us to be involved and get you and your mum some help. Having read the notes made based on what you have told my colleagues, your GP should have done a home visit the minute you called with concerns after her fall last year, and when she refused the follow-up CT scan, ECG, and general check-up after the fall, we should have been informed. It appears they have let you slip through the net and left you to cope on your own, which you no longer have to do" :eek:

I had been reading comments about SWs and doctors falling for the front others have put up when being assessed and wasn't very hopeful after the last year, but I'm pleasantly shocked that even over the phone, they can appreciate how mum really is.

And there was I, all ready to email bomb Hazel Blears, our local MP whose mum has dementia and is 'championing' raising awareness. I'm almost sorry I can't give her what for now - she isn't exactly popular round these parts :D

I'm so pleased to hear that you are finally getting somewhere. I've been in a very similar position to you and it's so draining having to fight your corner until you get a solution - it made me ill. But keep being persistent and try to keep a clear head, putting yourself first, whilst making sure your Mum has the best care she needs.

Good luck:)
 

katehh16

Registered User
Feb 21, 2014
33
0
derbyshire
I totally empathise with what you are going through. This week has honestly been the worst of my life. Long story, but basically mum in medical assessment unit from friday till yesterday. Rapidly spiralling deterioration in last couple of weeks for no apparent reason. 'Discharged' to a nursing home last night, very distressed and confused. Assessed by SW this morning and found place in local authority care home....no dementia specialty. Waited from lunchtime till 9.30 this evening by which time she arrived hysterical and wouldn't let them take her out of the ambulance. My brother and I have left her there sobbing, but we have run out of options xx

Sent from my GT-I9300 using Talking Point mobile app
 

Danelover

Registered User
May 2, 2013
14
0
gems67

Goodness, such a really hard situation...sounds like a crisis to me , my heart goes out to you, you must feel torn and on your knees and mentally spiralling .
Your mum is so much worse than mine (I am a nurse and mum is in her new home for Dementia residents).
Your health is paramount...... you are the lynch pin in all this. Your daughter and grand daughter really need you. ONLY YOU CAN LOOK AFTER YOUR MENTAL AND PHYSICAL HEALTH.

My mums ums residential home gave her her marching orders 2 wks ago and I had to find a good 2nd home for her asap.... which I did and decided this was the right time to STEP BACK FOR THE SAKE OF MY FAMILY. They are very relieved as I was really low in spirits. I find antidepressants help me enormously so I can cope and have a life. i now pledge to let her go on "her journey", I need to stay sane for me and my family.

You are in my thoughts...... things will calm down but get as much help as you can along the way and be kind to yourself , you are a VIP, it is ok to delegate and get help....can GP or Social
services help? has anyone assessed her?
 

Twoode

Registered User
Jan 29, 2014
50
0
Horrible situation

Gosh, what a horrible and stressful situation you find yourself in. There is light at the end of the tunnel though whether or not you think that way at the moment.

As for an action plan, thats a tricky one. Your mum needs assessing and it needs doing soon. The diagnosis of AD takes a ridiculously long time. Maybe when your brother comes up things will fit into place. As least you will have support.

As for the neighbours, is there one you can talk to. You need to be open about your concerns and ask for their help and understanding. Is is hard for someone looking in to understand. It might help you just talking.

Your doctor needs to be a bit more pro-active. For the sake of yourself, get tough.

Look after yourself. Stop being a martyr. It is so hard when you are used to doing it all, but dont.

Start off loading some of your problems. People really want to to help.

I understand completely and there is alot of great advice in the replies from other people.

Good luck. You are in my thoughts x
 

src123

Registered User
Jan 21, 2013
23
0
Scotland
Falling apart

I'm stunned :confused:

I'm stunned because I have always coped. Now, I just don't know how to. My brother is coming up from London to live with mum and his idea is that we'll share the care. I know it's going to be hell - he isn't prepared for what's about to hit him - I'm not, and I'm kind of used to it (and I've worked in a dementia unit previously) it's just so different when it's your own mother.

It's not helping that when I go to mums (around work and around looking after my 3year old g-daughter whose mum is 6 months pregnant and has had problems with her placenta meaning she can't really look after the little one herself), mum's neighbours, who are keeping an eye out for her disappearing ticks, are yelling abuse at me for not being with mum 24/7. I'm crying all the time I'm in such a mess.

I don't really have a question, I just needed to get it all out - sorry
I am sorry you have been through such a hard time. It sounds similar to what we went through initially but there is a light at the end of the tunnel. Hang in there.

It sounds like you have a lovely caring family at hand. If you can work with your brother and support each other that would save you a lot of grief and worry. You will need to have a routine in place for her and for you guys, so that you both get free time. All the hiccups are solvable.

You will also have to demand a referral to a consultant psych and then a referral to social work services for any homecare you need. These things are in place precisely so family carers like yourself can get help without risk to your own health and well-being. You may be asked to try different meds on her. If she won’t swallow pills then solution meds are on hand.

The GP has a legal duty to refer her for help, without which she will not be assessed. If it is a multi GP surgery then go and see one which you like and who you feel is helpful. Go with your brother. Don’t argue with the GP but make it clear that you EXPECT a referral urgently. That your health is at risk. Ask what is available and what the procedures are available to get her a consultant psych to diagnose her and get her the correct combination of meds. Get a copy of the referral letter if you have Power of Attorney. The diagnosis is subjective which means that not enough is known about the disease to know what treatment is exactly right. It is a case of trying things out.

My elderly relative was placed in a care home after a fall and it was not a great experience. We completely lost faith in the social work, the NHS and the care home system. We did not believe the care home system was a safe place to leave her. In the end we removed her and she has been living with us in our own home for the last few years. We will be having kids soon so we will be looking for a bigger place with a granny section. That way paid carers will have their own access door.

It has been a struggle working as well as being her primary carers but I do not regret it for a second. We are also her power of attorneys. We give her food and personal care in the morning and evening and we have a paid carer at lunchtime. One of us is always present. We have a great GP who listens to us when we need help. She had an assessment at the memory clinic. We did not like the consultant psych so we asked for a second referral explaining that things did not gel with her and the consult psych. When I am too worried or tired to deal with the NHS, carers etc, my husband bless him steps in. There are going to tears but at the end of the day you love your mum and you want to help her. A lot more help is available when a family member is on the side of the dementia sufferer demanding help.

Sometimes physical symptoms or the meds themselves can knock them off their kilter i.e. constipation or UTI. She can then be really upset calling us names, spitting at us etc. We have meds to deal with constipation and UTI and she then returns to ‘normal’. We weather it, we tell her to stop and when she is calmer tell her that when she is frightened or uncomfortable to breath. This she remembers when she next kicks off. Repetition also occurs. If the repetition gets too much put on headphones and listen to music to give yourself space. Get some help yourself. Talk to Alzheimers helpline. Sometimes they have family carers swapping stories which can help and make you laugh at the world!

It may help you guys to move her to a house near you and your brother so that you are at hand but not living with her if you don’t want to. I do not know if this could be an option for you. Right now we have a routine in place which is changed according to what is required. For us our relative was diagnosed with moderate to severe. We did some research there is a review on Nutrition and Dementia by Professor Martin Prince of King’s College which gives great info. Some mornings it is difficult to get up because I do feel tremendously sad about what she is going through but I know as family we will accommodate her needs and adjust things so that situations are not so bewildering for her. For us care homes are impersonal and failed to treat her like a human being. However everyone’s circumstances are different.

I hope everything works out for you Gem.
 

Giblet64

Registered User
Jul 25, 2013
4
0
Oh Gemz you are describing myself with my mother last year. The best question that was asked of me by a charity worker was "you need to decide if you want to be a carer or not". Both answers would then take me down very different routes. I felt so so awful but the answer was no, I didn't want to give up my career, my home, my family life - nor would my mother have wanted me to. SS were no help at all. She had the diagnosis of AD and I had become her 24 hour a day carer. I was falling apart, never able to leave the phone, constantly called by neighbours, the police, phoned many times during the night. She didn't know who I was most of the time. I was trying to raise a family and work full time and I wasn't coping. Eventually I decided to independently visit 20 local care homes and make a short list for 'when the time comes' (how do you know when that is?). It actually came very suddenly only 1 week later after being called out by the police yet again at 3am who had picked her up (on one of the coldest nights of the year) at the airport (she told them she was going to a party). I then phoned my favourite chosen home and she was admitted as an emergency that afternoon. They have been amazing and she is so settled and happy (although still waiting to go home - but she was doing that when at home).
At least now I know she is safe. I still feel so guilty but I did all I could. Others may have done more but I couldn't. Good luck.
 
Last edited:

Ding Dong

Registered User
May 1, 2013
21
0
This all sounds so familiar and being the good daughter you are, you will keep on trying to do the impossible until it breaks you - and Social Services will let you!

Everyone of us feels guilty when our loved ones go into a care home, but that does not mean you are washing your hands of them. You can continue to be a good daughter, visiting the home regularly, but will be able to get some sleep at nights, while the staff keep mum safe.

You have struggled on for long enough and done much more than many relatives would, but for the sake of your own health and for the well being of the other members of the family who also need your support, you need to start pressing for a care home, even if it is only for some respite care. If you don't, you are heading for a crisis or a breakdown. Your brother coming may postpone this, but mum is not going to get better. Finding a home you like can take time and often there is a waiting list. Even with your brother coming, there is no harm in looking at the homes.