When I decided to care for my father I stumbled in to it blindly and made many a mistake as I went along, finally getting the hang of things and finding out what I needed to know.
I don’t proclaim to know everything, but I have a few ideas that may help anyone just starting out. I have made them in to a short list which I hope is helpful. When reading the list bare in mind I reside in the United Kingdom and some information may not translate in other countries.
So here goes
Tip One – Preparing for the Role
Preparing to become a caregiver may take conscious thought or may just happen out of the blue, but either way you need to understand what is expected of you. You also need to prepare yourself for the role to become more time consuming the longer you do it. Put together a pros and cons list for yourself and the person you will care for, taking in to account time, needs, location, safeguarding and finances.
- Look at how much time caring will take out of your day.
- Look at the overall needs of the person to be cared for.
- Look at whether you have the ability to perform those needs.
- Look at location – will you travel to and from where they live or will you/they move in to their/your home.
- Look at safeguarding to prevent accidents within the home.
- Look at what equipment maybe required to safeguard home or mobility.
- Look at security of the property to prevent an escaping loved one, they do like to wander.
- Look at finances – can you afford to take on a caring role.
Tip Two – Finances
When it comes to money everyone needs to assess the cost of caring for a loved one. In the UK your entitled to carers allowance if you fall into any of the following categories
- Care for someone for 35+ hours per week.
- Are 16 years of age or over.
- Not in full time education.
- Don’t earn more than £128 per week after tax.
If you are unemployed or care full time you are entitled to Income Support which lifts your weekly income to approximately £107 per week, but bare in mind as Carer’s Allowance increases the Income Support decreases, so it stays at approximate £107. Another criteria for a carer to receive Carer’s Allowance is dependant on whether the person cared for is in receipt of one of the following benefits which are
- Personal Independent Payment (PIP)
- Disability Living Allowance (DLA)
- Attendance Allowance (AA)
- Armed Forces Independent Payment (AFIP)
Tip Three – Daily Routine
Have a daily routine your loved one can understand. Do the tasks at roughly the same time each day, so they recognize patterns for themselves and do not force them. If they are not ready for a specific task at a specific time, walk away for ten to fifteen minutes, then ask them if they are ready. Always communicate and look out for nonverbal cues. Dementia is a progressive disease, so the ability to adapt is more important than how you care for them since caring becomes second nature. The only exception being incontinence because that can lead to rashes and sores, which can lead to infections, so incontinence needs to be taken care of when needed. Also, watch out for swallowing issues, which can lead to choking fits in the later stages of Alzheimer’s and Dementia. Try and have a set time to get up, have breakfast, have lunch, have dinner, go to bed, also try and alter what you do each day in between set tasks.
Tip Four – Calendar, Day Planner and To-Do-List
Always have a Calendar, daily planner or a to-do-list of tasks with times you can tick off or scratch out, so you don’t confuse yourself. You’ll want a day or weekly planner to record any relevant events such as daycare, doctors, nurses, or hospital visits. A place where you can keep track of the days because you will find that they will start to blend into a continuous cycle of wake up, meander through the day, and then go to bed. The basics are easy to remember, but as you start to see every day as a type of groundhog day then some way of keeping track is an almost necessity, below I have given a few ideas.
- Use a flip calendar or wall chart somewhere easily accessible, so on a night or first thing in the morning you can see at a glance if there is anything important to do that day.
- Use a day planner or personal organiser in pretty much the same way as a calendar or wall chart, but in an easy to carry size which you can keep on you at all times when not at home.
- Use a to-do-list which you can fill in daily or weekly to remind you of tasks that need doing. This can aid in your daily routines such as timed meals, timed medication, household tasks requiring to be done or simply as a memory jogger which you can tick off as you complete a task.
Tip Five – Take Care of oneself
Above all else, do not neglect your own health which I admit I did– gaining weight which I am struggling to lose now. Think about it, if you are ill, how can you care properly for your loved one who won’t understand what is happening and most definitely can’t care for you? This highlights another factor to consider have a plan in place in case you do fall ill which I touch on, in tip six. If you are part of an extended family organise a time for someone to step in to the role for a couple of hours a day to give you a rest or time to exercise, meditate or whatever else you enjoy doing. If you are a lone carer and the person you care for can’t be left alone for an hour or two take advantage of a caring service for a couple of hours a day or a daycare facility that provides clubs or day care for a few hours a day. Also try and find a group you can join to socialise with people just like you where you can talk about how you’re doing or pass on tips to each other to help with the caring role. One other tip is to register with your general practitioner as a carer so you can get a Carer’s Assessment for your own health.
Tip Six – Clubs, Daycare and Rest Bite
Even the best carer in the world needs time to do things for themselves, whether it be an hour, a day or even a week to recharge the mind, body and soul. So having a plan in place for the time when your loved one can’t be left alone is must do.
Even the best carer in the world needs time to do things for themselves, whether it be an hour, a day or even a week to recharge the mind, body and soul. So having a plan in place for the time when your loved one can’t be left alone is must do.
- You can start off small like find a centre that provides a pensioners club with qualified carers to oversee the people attending like a daily lunch club where they can go to have a meal and a chat or a community group that has a singalong, card games, bingo, etc.
- The next stage is a daycare where they can go for five or six hours, once or twice a week which gives you time to yourself to do whatever you please.
- Another good option is to have a rest bite plan in place where your loved one moves in to a care home for a couple of days or a week, if you feel the need for a holiday away from the loved one you care for or if the unexpected happens and you have an accident or require a stay in hospital or find yourself too ill to care for them, which has become blatantly obvious lately, with the outbreak of a pandemic.
Tip Seven – Keeping the Brain Active
Just as much as you need to keep your own brain active it is equally as important to keep your loved ones brain active. Set a side a time slot each day where you can thoroughly interact with the loved one to help their cognitive functions for example
- Looking at pictures.
- Listening to music they like.
- Having a sing-a-long.
- Having a chat about anything.
- Asking and getting them to talk about their life.
- Playing cards or dominoes.
- Doing jigsaw puzzles or word games.
- Helping them exercise or going for a walk outside together.
Tip Eight – Using Technology
Technological advances have grown rapidly over the years and is a good way of making your life easier. As a carer you can use the internet for such things as
- Managing your health by giving you access to your doctor for online appointments, appointment booking and repeat prescription ordering as long as your doctor’s practice has the facilities available.
- There is also technology that gives you piece of mind to leave the house to go shopping or let you get a good night’s sleep, but they can also give the person you care for more independence. This is known as telecare (UK) and can provide devices that warns you if the gas has been left on, the person has gotten out of bed, sensors on doors and windows that inform if they have been opened and wearable sensors that informs you if a fall has occurred.
- You can also use the internet for the usual things like shopping, online banking, chatting in online carer’s forums, keeping in touch with family through social media (email, skype, twitter, Facebook, WhatsApp, etc.), reading online books (Kindle, Wattpad, etc.), listening to music online (Amazon, Spotify, Apple, etc.) research family history (Ancestry, Family search, Findmypast, etc.), take online education or simply play games (scrabble, patience, etc.).
Tip Nine – Legal Protection
One of the biggest mistakes a lot of carer’s make is when it comes to the right to speak on behalf of a loved one, because as an individual you have no rights to act on behalf of a parent unlike with your own child. So basically while your loved one is still able to sign their own name and can still understand what is being asked of them put some legal safeguards in place by getting the relevant legal documentation created and witnessed such as
Once you have all these documents, store them all together in a safe easy to access place, for if or when the occasion arises that they are needed.
One of the biggest mistakes a lot of carer’s make is when it comes to the right to speak on behalf of a loved one, because as an individual you have no rights to act on behalf of a parent unlike with your own child. So basically while your loved one is still able to sign their own name and can still understand what is being asked of them put some legal safeguards in place by getting the relevant legal documentation created and witnessed such as
- A Lasting Power of Attorney (LPA) which allows you to take care of your loved one’s affairs without worrying if they become unable to do so themselves. There are two types of LPA:
- A “Property and Financial Affairs” LPA allows you to deal with paying bills, buying and selling property and managing bank accounts and investments.
- A “Health and Welfare” LPA covers decisions about health and care and even deciding where they are to live. This can only be used if someone is incapable of dealing with such matters themselves.
- An up to date ‘Will’ that sets forth their wishes regarding the distribution of their property so you as heirs are not forced to spend additional time, money, and emotional energy to settle their affairs after they’re gone.
- A signed DNR order is set up, before any emergency which allows them to choose whether or not they want CPR in an emergency. It is specific about CPR. It does not have instructions for other treatments, such as pain medicine, other medicines, or nutrition and takes away the carer’s burden of choosing to let a loved one die.
- A prepaid funeral plan (either paying for it outright or monthly) which gives the person whose funeral it is, a chance to have their input in to how they wish the funeral to be performed, so family have less financial issues to worry about when that time comes.
Once you have all these documents, store them all together in a safe easy to access place, for if or when the occasion arises that they are needed.
Tip Ten – Preparing for the End of Caring
Everyone’s caring journey is different. In some cases the loved one’s pass away peacefully in their sleep before the role of carer becomes too much, while in other cases, carers find that eventually they are unable to provide the care that’s needed or are caring for someone they know who has a short time to live. Whatever your experience of caring, thinking about what happens if you are no longer able to care anymore, or what will happen when the person you care for dies, can help you be ready for the future. Below are some ideas,
- More care and support – If the person you look after is no longer able to look after themselves, even with further support for you and the person you care for, then residential or nursing care is a sensible and realistic option to consider.
- Residential care – It’s really important to get good advice about how to choose a care home, what to look for and, importantly, how much it might cost. Speak to social services or your insurance provider (if in other countries) or contact a support group similar to Age UK. Care homes welcome residents’ spouses, partners, relatives and friends and encourage them to continue to enjoy activities together.
- End of life and bereavement – It may be that your caring role is coming to an end because the person you care for, is at the end of their life. Many people want to die at home. Your GP can tell you what support could be available locally to enable this to happen. In the UK, Marie Curie has useful information to help families appreciate what to expect and about making plans for caring for a loved one at home. It’s important that you get good information and support. Grieving is a very personal thing and each person experiences this in their own way and within their own time frame. If you feel you are not coping, you may find it helpful to contact a specialist bereavement organisation.
- Rebuilding your life – There will come a time when you need to start thinking about rebuilding your life. Community groups are often a good place to start, or you may want to think about exploring the opportunities volunteering can offer. Use what you have learnt to benefit somebody else.
Below are some web pages that you can visit for advice,
A Practical Guide to Healthy Living – NHS
How to Prepare for a Live-in Carer – Elder.org
Carers Checklist – Age UK
Below I have added some useful organisations that you can get advice from
Age UK
- National charity providing information, advice and services to older people at both a national and local level.
- Website: www.ageuk.org.uk
- Telephone: 0800 169 65 65
Alzheimer’s Society
- A support and research charity for people with Alzheimer’s or dementia and their carer’s. It provides information and support on all forms of dementia.
- Website: www.alzheimers.org.uk
- Telephone: 0300 222 11 22
Carers Trust
- We work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.
- Website: www.carers.org
- Telephone: 0844 800 4361
Carers UK
- National charity that provides expert advice, information and support to carers, we connect carers so no-one has to care alone and we campaign with carers for lasting change.
- Website: www.carersuk.org
- Telephone: 0808 808 7777
Cruse Bereavement Care
- Offers information and counselling to people who have experienced the loss of someone close.
- Website: www.cruse.org.uk
- Telephone: 0844 477 9400
Marie Curie
- Offers information, advice and practical support to people living with any terminal illness and their families.
- Website: www.mariecurie.org.uk
- Telephone: 0800 090 2309
Mind
Five small reminders for you think about- A mental health charity providing advice and support.
- Website: www.mind.org.uk
- Telephone: 0300 123 3393
- NHS website providing information and advice on NHS services, healthy living and a wide range of health conditions.
- Website: www.nhs.uk
- A UK wide charity providing short breaks and holidays (respite care) for disabled people and carers.
- Website: www.revitalise.org.uk
- Telephone: 0303 303 0145
- This service is aimed at people who have had a stroke and their family and friends.
- Website: www.stroke.org.uk
- Telephone: 0303 3033 100
- A UK wide charity that helps people in financial hardship to gain access to welfare benefits, charitable grants and support services.
- Website: www.turn2us.org.uk
- Tell your friends, family and GP that you are a carer.
- Find out more about your health conditions and those of the person you care for, their treatment and medication.
- Find out what practical, financial and emotional support is available.
- Speak to your local social or carer’s service to make a plan in case of emergency.
- Make time for yourself each day, even if it’s only ten minutes
