I have found myself suffering hugely since mum went into the home, I am lucky she is calm and for someone with Dementia it could be way worse, she still knows me thank goodness. due to all the stress, it has made it hard for me to visit and I really really want to visit!! I made it to see her yesterday and it does calm my mind down and I am so glad to see her.
I had hoped today to feel better, but I just dropped right down again and struggle hugely with the day, I make myself do stuff, and I still have the horrible financial thing to go through next week with the local authority,
should be able to stay in our home, as I am in my 60’s and have lived here a long time, but its just all adds to the pressure. The home is I guess well run, but I see details are missed out they obviously do not have enough staff, I guess that is a major issue all over the place now.
I know I have to face that mum at some point is going to pass, she is aged 94 just, and has had a cough, she hates the food as they mush it all up, and she still has critical faculties, despite yes she does forget quite a lot of stuff. I cared for her for six years and now I am about 50% slower, and do not sleep to well, hate her not being here, despite the work it was never something I hated --she is a beautiful kind lady and it is a privilege to look after her…
.now I am not able to control many things and I have to deal with that reality, life turns out to be very harsh for so many in our twilight years, and no sign of anyone in Government willing to change this I so salute all of you who go through this time of life caring for anyone your parents or even your children –
people mean well, they think you can just take up a hobby again, but if you are really down you are fighting your own mind, I do walk – and that does help but with this dam cold I also have to watch the bills, so in a room with no heating on its crazy what we are living through… also when you know you won’t be able to continue to stay for the long run in your home of 40 years, and you do not know how you will manage until your pension --it all hangs in the air, one day at a time is the only way I guess.
Ms Anne, I see you have been a member for a few months now. I’m not sure if you know about our weekly online catch up called Care for a Cuppa? Every Monday afternoon, carers like yourself, come together online for about an hour or so to chat, support and share information. If you haven’t, please think about coming along, its a great way to chat and meet other carers. I’ve attached the link to our page where you can sign up. There’s no pressure to share anything, please have a look and see if you would like to join us.
(Care for a Cuppa | Carers UK)
many thanks
Ingrid
If mum owned the home, then the value should not be taken into consideration by Social Services in any financial assessment. Talk to the Carers UK helpline about the financial assessment, they may have information SSD “forget” to tell you about! Never trust a social worker dealing with anything that concerns money. It should be done by someone from the Council’s “Financial Assessment Team” but ONLY after an NHS Continuing Healthcare Checklist is completed. Did mum move there from home, or hospital?
You are definitely still a carer - you are visiting your Mum, will no doubt be advocating for her at the home and still managing things for her on her behalf.
Please take BB’s advice and contact the helpline for advice re the financial assessment and the house ,
Our telephone Carers UK Helpline service is available Monday to Friday, 9am-6pm on [0808 808 7777](tel:0808 808 7777). Alternatively, you can contact our Helpline service by emailing advice@carersuk.org at any time.
Have you spoken to your GP about your anxiety, they should be able to help.
You may also find the Carers Uk listening service is helpful to you, a chance to talk things through.
Is the food mushed up because it’s over cooked or are the staff mushing it up because they are worried she will choke as she is coughing ? You can request that they don’t mush it up if she can cope with it. You might have to remind them periodically - but at least your Mum would enjoy more of her meals.
Going from caring 24/7 to being on your own and visiting someone is huge and it will take time for you to adjust. Others on here will have experience of this and be along to offer suggestions and support.
Ms Anne
You are still a carer. I used to ’ care manage ’ when my late husband was in a nursing home. He has vascular dementia and other health issues including strokes. Have the staff told you your mother chokes on food if not mashed,? Had the swallowing test by professionals,? You should have been informed if she has. Hubby had it. You are entitled to read the daily information that should be kept up to date. Sometimes for me it wasn’t pleasant reading but at least I knew.
I understand you feeling lost at home. Take one day at a time and it will be easier eventually. Guilt is an awful feeling. Change it to sad. Sad that your mum is now in a care home, but you know it’s best for her well being and safety
Care/ nursing homes can’t have the same standards as yours. I felt better when I accepted that.
Winter always leaves me feeling “low” when it’s cold wet and miserable. I’d love to hibernate through January and February. However, it’s also a good time to do some planning for holidays, and also do some decorating. I always used to do one room every January, then by the end of the month it was all done, I had lost the Christmas extra pounds, and need not think about wasting any of the summer months indoors decorating! It’s also a good time to plan ahead, but that can be very difficult when for years your life has revolved around someone else. Soon after I was widowed suddenly, 16 years ago, I came across a book called “Starting Again” by Sarah Litvinoff, published by Relate. Whilst written primarily for couples separating, it’s so relevant to widows and carers too. We know we are facing a new chapter in our lives, we want to do the right thing, but what exactly is that? This book is really well written, you can just read a few pages at a time, and think about what it will mean for you. No fancy language, it’s written in a very friendly fashion. Last time I looked there were copies on ebay at very reasonable prices. I still keep mine in my bedside drawer, and look at it from time to time.
I used to feel the same when my Mum was in care home and definitely was still her carer. I had to deal with her paperwork, arrange for hairdresser to visit, take her to appointments, make sure she had everything she needed, update relatives about her and visit every other day.
The others have outlined very useful contacts but I just wanted you to know I was feeling just the same as you. Xx
Thank you Penny, I think it is because I am struggling so much with the loss the depression and how its affecting my health, Doctors pills do not heal- and can also make things even worse, I cannot afford nasty side effects…just looking at the insert was enough to put me off.
Despite the high fees there are not enough care staff, and the finers points are missed, seeing these dear people just sitting fast asleep is dispiriting,and then I awoke my mum - she was so pleased to see me, which is great she still very much knows who I am. I do not have a car, and so I have to walk, its about 20 mins, and I have some sciatica due to stress! But it is good that she is so close…
I just feel I cannot stay indoors every day, and so much to deal with. I live in the home and so I am in the category that I am 60 plus and its mum’s home, but in the leaflet they say the home will not be included in doing the financial assessment which I am dreading to be honest.
Thank you for your book recommendation – I am still struggling with the overwhelm and coming to terms with everything, it helps when I can get to see mum - which is a challenge, but have seen her three times in January – its tough as I am not completely well due to stress –
I don’t have close friends who really can be supportive – so it can be extremely isolating --but I do have some support online indlucing this group too
thanks
Anne
Thank you --yes it really is one day at a time. It was the nurse who had her food put to the mashed consistency, she did have an issue one day, and they want to make sure she does not choke, she does not like the mushed food. I might bring it up again with the head nurse.
But I will do it when I am there rather than by email. I have not felt anything to be honest except overwhelm and numb and missing her, I have not yet felt guilty, as I know I had no choice – but I expect it will come at some point – so many people are going to have such a nasty shock and I think it made me think about my future and that did nothing for my state of mind. Yes it is true the care homes can only reach a certain level of care… I would be great but I couldn’t do it --6 years is a long time, and mum was not hard to care for she was calm and still is a very very gentle and lovely kind human being
Mum had the assessment for NHS funding which she did not get
she is having the proper financial team on the job so I am not concerned well maybe still slightly, but I will be on that phone call with them next week. – they should honour what it says in the booklet which is the mandatory disregard to the property as I live there full time for 40 years! but of course it is still daunting. I rang the helpline but they do not know the legal stuff… Mum went to the CARE HOME from the HOSPITAL thank you Anne
Were you involved in the CHC checklist assessment? Given a written copy afterwards? If not, it wasn’t done properly. Ask for a copy, and if you don’t agree with it, appeal. It may take some time.
Have a look at the details Melly posted about the legality of hospital transfers before your meeting. Were the procedures followed properly. Were you involved at all? How long has mum been in the home now?
I may struggle with being a regular - due to my front room being like an ice box and not being able to afford to heat as much as needed BUT I think it is good to connect up with people too who understand the roll of carer
I so salute all of you who go through this time of life caring for anyone your parents or even your children –