Hi everyone, I am new to this site and suppose if I’m honest, feel like I’m drowning. Both my parents have problems, Dad Vascular Parkinson’s and Mum Vascular Dementia… Dad cannot mobilise at all and Mum … what can I say, getting worse. She has recently taken another dive which breaks my heart. I go almost every day, put Dad in his wheelchair , bath Mum in fact I can’t believe the simple things I have to do for her like actually give the dog water as she keeps putting the bowl upstairs in the bathroom! They do have carers 4 x day but obviously the visits are quick and they need the personal touch to feel loved and safe, even the carers say how different they are if I miss just one day and I feel so guilty when I do but I’m exhausted. I work and still have a son who is at college so supporting him especially as I was widowed when he was just 5 years old, life has been tough for him and I am so scared of letting them all down that I run myself ragged. None of my siblings help… long story which actually feels like I am in some horror movie. I don’t know how to juggle everything , I am physically and emotionally drained and have no one to talk to. Sorry for the long rant… deep breath, tomorrow I will feel stronger.
Hi Ruth,
I just wanted to quickly say that I have seen your post and am sending ‘hugs’ your way! I also help both my parents and juggle family and feel tired and torn in both directions. I have siblings but they are both abroad so all the decisions and running around is down to me.
You will find some clever and helpful people on here that have been through it all before and can help to give you some of their ideas and opinions. I feel far less alone from knowing there are tons of other people in similar situations. I am sure you will get some answers to your post once people have seen it tomorrow xx
Hello Ruth and Welcome to the forum,
You are tottering on the edge of a cliff aren’t you? The problem is the eventual fall is inevitable and it’s a long way down. Sooner or later one of you (I include you) is going to be so ill that the whole family will be in crisis. I’m sorry to hear that your siblings can’t/won’t/refuse to help, although that is an oft told story here.
You have done so well looking after your parents, holding down a job, supporting your son and arranging the carers etc but there comes a time when one person, however loving and willing, just can’t struggle on any more.
There’s no hope that your mum and dad will ‘get better’. You know yourself that things are just going to get worse and the day is rapidly coming when they will need 24hr care and nursing.
The way of achieving this depends on finances of course. The magic number as to when your LA will step in to help money wise is £25,250.00 each in savings and assets.
Have you considered a Home? It would be worth researching Care Homes within your area. There may be a problem if you think your parents have to stay together. A Care Home which could take your Dad may not be suitable for Mum. Even if you are horrified at the very idea it is still worth getting information so that you at least know your options.
The first step is realising that there has to be a change. You have to accept that you are running out of road and it’s time to put on the brakes and change direction. I know how hard that is but the very decision will give you a sense of some relief and then you can start to plan the way forward.
One thing you must NOT do is even think of moving in with them or giving up work. That is not the best answer for any of you. I’m sure you will get lots of further advice and sympathy.
KR
Elaine
Thanks for your replies and yes Elaine you are right, I know in my heart the inevitable is going to happen no matter how hard I try to avoid it. The LA obviously want Mum and Dad to stay at home as much as I do , but, I feel the more I do the more they let me . Dad has 4x day calls and Mum 2x which is a problem in as far as when Dad ended up in hospital Mum only had the 2x calls. The carers always give Mum her tea as a kind gesture when they do Dad but as I said Mum needs reassessment and it put in place officially to keep things running smoothly when it happens. Unfortunately Mum will not allow the carers to bath her and I know she doesn’t get in night clothes when she goes to bed, again, she wouldn’t let them help her. Dementia is a terrible disease, so many twists and turns in it, how can you explain when people say… what do you have to do for her? The list is endless, little things no one would ever think of, picking up the dogs poo, keep searching for the tea towels and dish clothes, really random stuff as well as the basic shopping, washing etc. I am going to take her for a cup of tea to slowly introduce her to a care home who specialise in dementia this week as I know there might come a need for respite especially if Dad ends up in hospital again. I can’t bear the thought of her being frightened so I thought this would be a good way and they also do a day care service which again if she would go just 1x week will hopefully help to get used to that environment. I keep thinking maybe if I have a weeks holiday from work ( I’m self employed which believe me is not as good as it seems, no work no money, no holiday or sick pay) I can re evaluate things in some peace . The last thing I want to do is a knee jerk reaction like you said… give up my job, I need to keep normality ( whatever that is now!) for my son and me as much as possible. Thank you both for your kind words of support and wisdom.
Ruth,
My husband and I supported all four parents, all living near us, now all passed away. Like you, we did our very best, running our own business - but the parents never understood WHAT self employment working from home really meant. We were repeatedly called upon to do things in our usual working hours, so we had to work late instead.
This had catastrophic consequences, I developed a life threatening problem and my husband died of a massive heart attack at the age of 58, just three years after his dad.
Don’t leave it too late before you accept that your parents NEED 24/7 care.
Whilst they are parents, YOU are now in charge, the one who has to make decisions.
How to arrange 24/7 care depends on a number of things, but especially whether or not they own their home?
Do they have savings over £46,000?
How old are they?
Sorry about your husband, how sad. My parents are 80 & 84 years old. They have just over £33,000 so contribute towards their care package. Being self employed like you day is hard work and sometimes to accommodate things I end up working weekends too! I think it’s that fear of letting them down that actually keeps me going… horrible feeling that now one understands unless they’ve been there. Obviously Dad has capacity (fluctuating) at present but for how long who knows.
Hi Ruth,
I’m not sure if you will see this message but please private message me if you need to have a rant or I can maybe help you with some ideas.
I am in a similar situation to you in helping 2 parents and my Mum has vascular dementia too. It is very hard emotionally and physically to keep it all going. I had my own business and I gave it up in March last year as I was going back and forth to parents and hospital visits 2 hours away. I was hoping to have got it back up and running by now but it’s just not possible at the moment.
You have to remember that you are doing an amazing job and I am starting to realise that there are many people who wouldn’t dream of stepping in and helping their parents.
Anyway, PM me if you want to and take care xx