What to do when a parent becomes elderly, ill and needs care - tips, advice and sources of help.
I wrote this article in response to a fellow blogger whose elderly father has recently become ill and needs care. She has taken on the role of his carer and become overwhelmed with the responsibility.
I have been through the same situation and hope that my experience may help her and others who find themselves in the situation of taking on the care of their parents.
Most people are going to have to go through this at some point in their lives. Unfortunately everyone's parents are going to become elderly, face a deterioration in their health, need care and eventually die.
It is a very difficult time and unless you have friends who have been through it, it is difficult to know what to expect.
I hope you find the following useful which is based on my experience:
Life has changed as we know it.
When a parent becomes ill and needs a lot of help and care, it has a huge impact on the lives of everyone around them.
In the past, in countries such as the UK and the US, traditionally many women didn't work outside the home and they had the time to look after an elderly and ill relative.
In most parts of the world, this is still the norm. However, since the 1970 / 1980s many women work full or part-time often out of necessity. It often takes two earners in a household to be able to pay the mortgage these days.
Many women in their 40's/50's and beyond are being referred to as the "Sandwich Generation".
They may still have older teenage children at home or children who are about to fly the nest. They often start to get a glimpse of the days ahead once children have left home, days where they may be able to swap their full-time job for a part-time one and use their spare time to explore hobbies and passions.
Then Wham! One of her parents becomes ill.
She now finds herself in the difficult and demanding situation of trying to juggle looking after her children, a home, holding down a job and making sure her parent receives the care they need.
As a society, we have have never faced this situation on such a large scale before. Not many people are talking about it and certainly not many people are preparing for it.
When faced with a parent who has become ill and needs care, many women will automatically decide to assume the role of carer, but it won't be an easy decision to make. They will often have to give up work, move to another area or move their parents in with them. For other women, it is even more difficult, they may be unable to move or give up jobs for which they rely on their wages for survival.
Most women will do their best and muddle through. This article is aimed at women who find themselves in this situation and aims to provide some tips and sources of help.
If you are a man reading this article, you may find many parts apply to you as well and again I hope it can be of use to you.
First Port of Call - Social Services
(This is mainly aimed at readers in the UK)
When someone becomes elderly and ill with a high level of care needs, Social Services usually have a responsibility for helping to provide care and support.
Get in touch with social services to see what help, practical and financial they can provide.
They should come in and assess your parent and their care needs to see if they need help.
The main thing to remember is you are NOT on your own.
Social Services also have a responsibility to look after your parents.
The types of help that Social Services can provide
Once your parent has been assessed by Social Services, there is all types of help that they can provide. Ask them what they can help with:
- Can they help by sending in a team of carers?
- Can they help by sending in someone to help with housework, do shopping, laundry?
- Can they send an occupational Therapist round to see if your parent needs any special equipment?
- Do they offer a sitting service, someone to sit with your parent for a few hours a week so you can get out for a break?
- Can they offer respite care, where your parent goes into a respite Care home, so you can have a few weeks off in the year to go in holiday? Will they fund this?
Dealing with Siblings
When a parent becomes ill, it brings out the best and worst in us all.
It is a very difficult time for siblings who are all thrown into a situation together that none have experienced before or know how to deal with.
And if you don't normally get on anyway, there are bound to be problems.
I have several female friends who fell out with their sisters whilst their parents were ill. These led onto awful scenes at funerals and the sad situation where they will never speak to each other again.
It is important for siblings to try to work together. One sibling may automatically decide to take on the caring role, for other siblings it isn't an option as there are genuine reasons such as such as having a young family or business. Try not to resent them for it. It is just how it is. They may even feel guilty that the role has fallen on your shoulders.
If no-one is able to take on the role of carer on a full-time basis, then one of you should take on the role of Care-Co-ordinator, with the aim of building up a team of people to meet your parents care needs.
In this way, your sibling can still play their part. Talk to them to see what help they are willing to offer. They may agree to spend regular times each week with your parent. This gives you a break and enables your sibling to spend quality time with their parent.
Keep the lines of communication open between you all. You are all new to this and trying to find your way.
None of you have experienced this before and don't know what to expect or how how hard it is going to be.
Take a team based approach and build a team
I would recommend taking a team based approach to your parents care.
See yourself as part of a team. If you try to do it all yourself, your health and life will suffer
You have taken on the role of making sure your parent gets the care that he needs, but that does not mean that you have to be the Carer.
So, don't be your parent's Carer, aim to become his Care Co-ordinator and build up a team of people to provide the care that they needs and delegate the tasks.
If your parent wants to stay at home, you need to build up a team of support around you so that you aren't doing all the work.
At some point in the future, it will likely become too difficult to keep your parent at home and they will probably have to go into a Nursing home, where their care will be taken on by another team, which you can also be part of if you wish.
Other sources of help and advice
Make use of any carers support groups in your area for help and advise.
If your parent has a specific illness, find the local carers support group - they will have knowledge, help and advice you may find useful.
As a carer, you may be entitled to a £40 weekly Carers Allowance.
Don't be afraid to ask and push for help. Don't be too proud to accept help.
If you live in the UK, don't be scared of pushing Social Services to get the care that your parent needs and support for yourself as a carer.
In my experience, many people from Social Services will try to fob you off.
Remember all those taxes your parent has paid into the system all their working lives? Well, this is pay back time.
My Mum pushed and pushed to get the help that my Dad needed and then felt guilty about the money that they received to help pay for my Dad's care. So I said "Look Mum, Dad has paid into the system for years, now he has a genuine need. We live in Christian country, social services and the NHS were set up on Christian values to help those in need. Your needs are genuine. Let them help you.
Look after your health - mental, physical and spiritual
Take the time to look after yourself, keep up with healthy eating and exercise - I put on a stone and a half whilst my parents were ill and dying. I just grabbing whatever was quick and easy to eat and was sitting around in hospitals for hours and not getting any exercise.
Some people will go the other way, the stress of it all will cause them to not eat and lose weight.
It is important to look after yourself during this difficult time.
Give yourself mental health breaks - try meditation to stop the thoughts going round in your mind and relieve stress and anxiety. Get out into fresh air go for brisk walks in green open spaces.
If you are not normally very good at dealing with stress, situations like this will bring it to the fore. It is important that you look after yourself.
It is a well known fact that carers often die before the person that they are caring for because they regularly neglect their own health needs.
Spend Quality Time with your parent
Don't forget your role as a Daughter / Son.
Allocate time to spend with your parent that is just for the two of you to enjoy each others company.
Create Happy Memories and if you have any issues with your parent, try to resolve them.
Make time for your other relationships
It is important to maintain your other relationships otherwise they will suffer.
So, continue to go out on date nights with your spouse and meeting up with friends for a coffee or drink.
You need to maintain your relationships as you need a support network around you.
Try to maintain good relationships with your siblings - however hard it may seem.
Maintain your hobbies and interests and life goals.
It is important to try to maintain your hobbies and interests during this stage of your life and to have your own goals. There are two reasons for this:
- It helps you maintain a more balanced life. Having outside interests helps to reduce stress and takes your mind off of the situation.
- If you are caring for a parent on a full-time basis, when they pass away, there will be a huge gap in your life. Not only have you lost your parent, you have lost the role of carer. There will be a huge void which needs to be filled. However, if you have kept up with looking after yourself and maintaining your relationships, hobbies and goals, this will lessen the impact of the loss of your role as a carer and help you read just to your new life, which will again take time.
End of life care
There will probably come a time when your parent is so ill and their needs are so great that a nursing home is the best.
Don't see this as a failure on your part. We tried to keep my Mum at home as long as possible, it was hard work and exhausting for us all, but after a fall in the night, she became scared and decided she wanted to go into a Nursing home.
Choose your Nursing home carefully, Social Services have a list of prefered homes.
Dealing with your own immortality
Most people when they lose their parents are in their 40's/50's/60's and it really brings your own immortality home to you.
In your 20's and 30's you are just starting out on life and probably feel immortal.
It is a huge shock when you lose your parents and realise that you are middle aged and facing the same fate - becoming older, ill and eventaully dying.
I know I went through a bad stage of becoming acutely aware of my own immortality and very depressed as a result. This is fairly common and visit your doctor of you become really depressed.
These thoughts and feelings fade, although they will never go away. However, on a plus side - now that you have experienced such an acute knowledge of your own immortality, it may spur you on in other areas of your life, such as improve your health or your relationships, or take up hobbies and visit places that have been on the back burner for years.
Life becomes more precious and you no longer want to waste it.
Exploring and consolidating your spiritual beliefs about death
The illness and imminent death of a loved one also forces you to confront your own beliefs about death and what happens after. It makes you question such issues as life after death.
About my parents
My dad was diagnosed with MS (Multiple Sclerosis) when he was aged 50. The disease progressed to the point where he was immobile, blind, bed-bound, couldn't speak and was fed through tubes in his stomach. My Mum was my Dad's full-time Carer for nearly 15 years.
Because my Dad was so disabled, he had a Care Manager within Social Services, that person was responsible for assessing his needs and helping to get the financial benefits, care services and equipment that he needed.
In the early days of my Dad's illness when his symptoms were less obvious, my Mum had to fight to get help from Social Services but as my Dad's disabilty became more obvious, he was assessed more regularly and help was more forthcoming.
My Mum got help and support from Social Services because at the end of the day, it was cheaper to have my Mum looking after him than the cost of my dad going into a home.
My Mum was diagnosed with breast cancer and after chemotherapy was given the all clear, but a year later we discovered it had spread.
She was too ill to look after my Dad and decided he should go into a Nursing Home.
Two weeks after my Dad went into the Nursing Home, he died of Pneumonia.
Myself and other relatives including my sister, aunt and cousins looked after my Mum in her home until she had a fall and became scared and decided she wanted to go to the same Nursing Home that my Dad had been in.
My Mum was only there for a few days. Unfortunately, the care she received there wasn't great - which is another long story - I ended up sleeping on the floor to make sure she was looked after - and I think at that point she gave up and finally passed away - six weeks after my Dad had died.
Dedicated to my Mum and Dad x