How to Understand and Communicate with a Dementia Sufferer as a Carer

Understanding Reactions and

Communication as a Carer

When it comes to caring for a loved one with Dementia their reactions to certain situations will let you know their frame of mind long before their words can. The non-verbal or body language indicators like facial expressions, body posture, gestures and touch will help you navigate the ups and downs of being a Dementia sufferer’s carer. Learning how your patient or loved one attempts to let you know what they want will aid you in your endeavour to make them safe and loved. If they lose the ability to speak this will be the only way you have to communicate together and understanding that early on can speed up how you notice the non-verbalised communication better.

Facial Expressions

The simplest of looks can indicate if the person you care for is happy with how you are helping them or if something is wrong. If you are hurting them or they are in distress, they will most likely be indicate it in how they look at you even if they don't verbalise it. So always pay attention to the eyes and facial muscles for indicators to aid you.

Body Posture

How a person's body is postured can tell you a great deal especially if they are sitting a lot because how they sit can indicate pain, incontinence, irritability, boredom, tiredness, etc. Knowing the different postures the person you care for has can be helpful in determining the care they need from you at that time. Also if they are on the move a lot that can tell its own tale of boredom or simply they need the toilet or maybe they want to go out, if they are capable.

Gesture

A simple gesture can tell you so much about what the person you care for wants. Gestures include movement of the hands, face, or other parts of the body to indicate a person’s feelings. Gestures differ from physical non-verbal communication as they do not communicate specific messages and allow individuals to communicate a variety of feelings and thoughts, from contempt and hostility to approval and affection. To understand a simple gesture is to have your own language with one another and can simplify the need for numerous questions to get to an answer.

Touch

A person with Dementia can differ in the way they use touch which means they can either be very stand-offish or very touchy. So the way you can use this as an advantage is by noting which the person with Dementia is most of the time, then if they are the opposite at any point that could indicate a need or a want for help. For example if they are always stand-offish, but then suddenly want to be hugged or touched this could mean they are in distress and vice versa.

Reacting and Communicating as the Carer

As the carer how you conduct yourself around a Dementia sufferer is very important because that will determine whether the person been cared for feels safe or not in your care. So how you sound, move, touch and act around them will either generate a feeling of safety or make them feel they are in danger. The response you want to instil is one of safety especially if they are at a stage where they don't recognise you 90% of the time and respond to you as a stranger. The way you deliver your persona may be the most important lesson of your life and help you understand how you are seen through someone else's eyes.

Sound

When communicating with someone with Dementia the tone and level of your voice can either be soothing or scary, so it is very important to keep a calm balanced tempo to how you speak at all times. Never raise your voice, never shout and never portray anger, no matter how frustrated you are feeling. Also be aware of the level they can hear at when you are speaking because they may be partially deaf through age and adjust your calming tone to that level. Another point to be aware of is the speed and language you use because in their impaired state they may take longer to understand. Again due to their level of understanding ask a question, then give them time to answer before repeating the question again, all while verbalising in a calm soothing tone to help with understanding. When speaking always do it from straight in front of them and never from the side or behind, so as to prevent confusion. It will help them understand you are speaking to them and will help you know they are listening.

Movement

When it comes to movement slow, smooth and controlled is best around a Dementia sufferer, so as not to startle or scare. Fast aggressive movement can make them feel they are in danger. Also always approach within their eye line from the front and never from the side or behind just to prevent any unnecessary reactions from them. When helping them to move about revert your own pace to theirs rather than the other way around and when helping with personal hygiene or feeding keep your movement to smooth slow unaggressive hand movements. At all-time be aware of keeping your body movement friendly and non-threatening.

Touch

When it comes to touch it should be gentle enough not to hurt or bruise, but sturdy enough to support and be done with care for two reasons which are 1) As they age their skin can become like paper and tear easily so care needs to be taken when touching or gripping them and 2) if they show too much bruising or tearing you could be blamed for abusing them, when it is simply just accidental. Another pointer to be aware of is they may not like been touched, so if they are still capable always ask for permission before touching because it may cause distress or aggression which are both unwanted reactions to you simply caring. Finally dependant on the sexes of carer and cared for, be conscious of touching private areas of the body and try to use same sex carers when the need arises to touch private areas, but if same sex carers not available ask permission when mental agility still present.

Act

How you act incorporates all of the three previous headings of sound, movement and touch combined because your overall actions will either distress or calm the individual you are caring for making life for you both easy. A loud, aggressive and heavy handed mannerism used when performing your caring role will create a poor experience for your patient or loved one leading to a deterioration in their quality of life and possible legal action against you. Whereas, if you act in a calm, soothing and considerate manner you will improve not only theirs, but also your own quality of life. The latter will also bring you closer to the person you care for instilling a closer bond you may never have had before. Poor action equals distress and thoughtful actions equals wellness.

Conclusion

What can be learnt is that it takes two to create an understanding within communication, but where one party is slightly impaired or vocally disadvantaged, non-verbal or body language can serve as a necessary form of communication, but only if the person doing the caring is open to watching out for the non-verbal indicators the patient or loved one is projecting. Also how you appear outwardly can influence how easy or hard you find the role as your actions, language, tone and mannerisms will be mirrored by the person you are caring for in how they respond to you. So working together and understanding each other can aid in the overall carer role, but remember even if they don't recognise your face they will recognise you by how you speak, act or conduct yourself around them. If you combine how you conduct yourself with their non-verbal cues life will be well worth living for both of you. Caring for someone should never be just a job, it should be a privilege especially if it is a parent or a long term partner for it is done out of love not obligation and if it starts to feel like an obligation then it the time to pass that duty to someone who will see it as privilege.

A helpful website to visit for information on communicating with a person with dementia is https://www.nhs.uk/conditions/dementia/communication-and-dementia/

Carer’s Guilt List - Part Two

Part Two – The Guilt of the Bereavement

1. Introvert v. Extrovert

Becoming a carer for a loved one can be a lonely undertaken, but for an introvert it could be worse than an extrovert because like myself, introverts don’t have many friends which closes them off to the outside world. The way this effects a person can also effect the way they perform the role, so finding a distraction or a hobby is a way of staving off any hidden depression that may be developing under the surface. The extrovert who cares for a loved one has the advantage over the introvert because they already have a support network outside the home and may well have people who can relieve them for a couple of hours daily. But whether you are an introvert or extrovert, being a carer will have a lasting effect on you, how much it effects you will depend on your strength of character and what type of release mechanism you find to alleviate the stress caring can put a person under.

2. Starkness of Reality

The role of a carer is a reality that can become stark and bleak very fast if the individual doing the caring is not prepared for what Dementia or Alzheimer’s can do to a loved one. As the disease advances through its different stages towards the end of a persons existence they can become starved of reality because the mind fluctuates in to the past bringing a starkness to the daily reality they perceive as their life becomes a revolving door of lost time and memories creating uncertainty and anxiety within their day which will upset the balance of sanity, but don’t contradict them as the ailing mind is very fragile and could cause a deeper depressive state or antagonise creating an angry outburst. Being the carer you can also experience a starkness of reality in your own life as the role becomes longer and harder, so you have to be ready to play a bit of a martyr and role play depending on the particular reality they are living on that day or hour, but also hold on to the possibility that you will feel a little starkness in your life when dealing with the role of carer. Just be honest with yourself because if the hardship takes its toll then how you perform that role will be affected, in turn effecting the person you care for.

3. Sense of Emptiness

Long before the inevitable death of your loved one, you may have a sense of emptiness as they slip away from your reality in to a world of their own. I cared for my father for seven years and witnessed his withdrawal from life on a daily basis which gave me a sense of emptiness and a stark truth of how life would finally be without him. You can’t imagine the hurt you will feel as your conversations turn from parent and child to that of a third party who is their to care for them. There are days when the pangs of guilt you feel are like a vacuum engulfing your very space because you find yourself filled with pity thinking more of how their ailment is effecting you rather than how they are feeling. Don’t get down heartened if that is you some days it is only expected as you give of yourself fully in mind, body and spirit to the wellbeing of your loved one. These are the times when turning to a close family member, friend or even your religion can stave of the pains of sadness and help restore your equilibrium to carry on.

4. Overwhelming Sadness

As with the last topic the burdens of caring can play apart in the overwhelming sadness you will feel as well. My sadness came from watching the once strong man who picked me up as a child and showed me how to forge ahead in life turn in to an immobile mute who couldn’t care for his own hygiene, that is what really brought on the sadness. Sitting in the same room with him watching him sit in the same position for hours on end unless I helped him to move, not able to stand as his body gave in one muscle at a time. The worst sadness came at the end when all I could do was watch him slip away from me in to endless hours of sleep, with the odd occasional look of hurt in his eyes that was like a dagger to the heart each and every time. The final two weeks of his life were the worst as I spent hour after hour at his hospital bedside only leaving to eat, shower and sleep. The sleep was the hardest because I had been told by the doctors there was nothing they could do for him, but make him comfortable, so every time I closed my eyes I was waiting for the call to tell me he was gone or to get to the hospital quick so I could say goodbye. This is what I found to be an overwhelming sadness that over shadowed our final days together. In the end as much as I wanted him to live, there was this underlying guilt felt as I wished for his time to be done and pass on peacefully rather than the pain he must surely have been in.

5. A Finally Never Wanted

With nothing left for the doctors to do, I was asked if I would like to take him home, so he could pass on in his own bed within his own home, which I did. I have to tell you I am not sure which is better a quick death or a slow death as they both hurt the one’s left behind. I have experienced both. With dad it was a long seven years of heart wrenching anguish where I got to say goodbye to him whereas with my mother I spoke to her before I went to work. Then I received a phone call from dad while I was at work telling me she was been rushed to hospital and by the time I got to the hospital she was gone, so I never got to say a proper goodbye. I wouldn’t wish either scenario on anyone. How dad passed was a long drawn out two weeks which ended on a Sunday morning in June. The previous Tuesday I had been told I could take him home, but due to firstly, the carers needing to organised for a specific start time, then an issue with the ambulance booking he did get home till Friday. I got him settled and every thing seemed great except his GP neglected to do the required home visit so there was no official hand over of paperwork and he would not be seen till the following Monday. Saturday seemed to be going well then he started to struggle breathing as he wasn’t able to swallow properly and he sounded like he was drowning, so I called in the palliative care nurses who came in just before seven pm that night and gave him an injection to ease his breathing, but I still hovered all too frequent to make sure nothing was happening. At about one in the morning I finally decided to try and get some sleep because the caring team was due in at seven to wash and change him. I woke to the alarm going off at six on that dire Sunday morning, got dressed and checked on him before going to the toilet. That was it, when I returned he was gone just like that. After seven years of full time caregiving it was over in a single breath. It was a finally never wanted, now I no the true meaning of loneliness.

6. Bereavement

So what is bereavement? Well for me it wasn’t how every one tells you it is. I don’t think I have ever openly shown bereavement and have always shown a hard exterior to any family over the years. I believe it comes from a need to be in control always. I never knew my grandparents, so I never experienced close familial loss until my mother died and I was in shock over how quick it happened, but instead of processing the death I went straight in to taking control of the funeral arrangement to give my father the time to process the loss of his wife of 47 years. There was odd occasions when I felt the grief, but I shut it away and instead concentrated on work and caring for my father. Then came my fathers death sixteen years later and on this occasion there was no bereavement as such, because over the previous seven years I had done my grieving as I watched him deteriorate, so in the end it was more like a relief which in itself was pure guilt, for his suffering had gone and he was now at peace. Then came all the death related duties which took up my time. I can say there are days when bereavement gets the better of me, while watching a sad scene in a film or listening to a particular song and the tears flow for no known reason. So bereavement to me is a lasting entity which even after sixteen years for my mother or the year and half for my father creeps up on me, how you deal with it is a different personal journey for everyone.

7. Moving on

Again like bereavement, how we move on after losing a loved is a personal thing. Some people wake up and just get on with life, while others linger in the loss for a long time. For me I have always been a bit of a loner, so other than searching for work, you could say I have just meandered along at my own pace. Some people don’t have the luxury of moving on without been tied to the past because close family are involved in the equation, again for me that isn’t in the mix because now there is only me with no spouse, kids, brothers or sisters to worry about upsetting. I move on, I grieve, I look back to the past and mourn the family I no longer have, but at the end of the day life is life and death is death. You can do something about the first as the latter comes to us all in the end. For me life moves on, but I still remember what I have lost. Two loving parents who were dealt a hand that was ever changing as life is never a constant, so I will move on alone writing my thoughts down in poems and on my blog.

Part Two Conclusion

So the illness is over and the bereavement starts, but how you cope with the guilt, the sorrow, the loss is predominantly your personal journey. If you have someone close to share it with all the better and just remember the heart may break, but it will heal with time. Grieve in your own time frame, there is no set period for loss to no longer hurt. Believe me when I tell you I still feel the loss of my mother and she has been gone for sixteen years, my father too, but that is still a fresh loss and I keep them close in pictures and memories because they were and are still a part of my life even if it the past. Memorialise your loved ones in your own personal way. The pictures and the memories I use to fill in the emptiness I feel on a daily basis. My thoughts are with anyone who is or has gone through the turmoil of watching a loved one suffer with dementia or Alzheimer’s, I know it is a heart wrenching thing to watch, so keep safe and if you are still caring enjoy the time you have left, savour every moment with love.

Carer’s Guilt List - Part One

Part One – The Guilt of the Illness

1. Emotional Rollercoaster

This will depend on the person doing the caring and how well they cope with stress because as a carer for a family member you don’t have the option of closing the door and walking away from the role at the end of the shift. In most cases the only time you destress is when you sleep, but that is not always true as it will depend on the person you are caring for. In my case in the early years of my father’s dementia time was an issue. There would be days where he would wake up during the night and wander, once or twice leaving the flat in his underwear which was not what either of us wanted. As the dementia moved on, there were days of good and bad cognitive awareness which was the biggest issues of our combined life together. With the inevitable ups and downs of the disease hampering the sufferer there will always be a rollercoaster of emotions for the carer to cope with on a daily basis combining a feeling of satisfaction that you are looking after a loved one with the guilt of not being able to cure them or make things better. This is a carers pain.

2. Keeping Busy

Part and parcel of a carers role is finding things to do while the person you take care of relaxes or catnaps or is in bed, So keeping busy is a good way to occupy the mind to prevent a breakdown, but this also comes with a little guilt when you do something that makes you happy knowing the person you look after used to like partaking in the same activities. Dad always liked doing crosswords and sudoku, but his dwindling cognitive ability put a stop to that as it also did with his enjoyment of a quiet drink down the pub. So when I found time to do the things I like to do like read and write poetry or watch a good film undisturbed there was always a twinge of guilt, but if I hadn’t made time to do those enjoyable ventures it would have been a problem for my own sanity. If all you do is care, constantly looking after someone’s hygiene, wellbeing, dietary needs, household chores and don’t take time for yourself, you will burnout and start to hate what you do or hate the person you care for. So don’t feel guilty for taking a little you time.

3. Burst in to Tears

I am a fifty plus man who cared openly for my father taking on a role many deem is a woman’s job, but let me tell you that is a misogynistic outlook on caring. I am not afraid to say it, I am an emotional soul and there were times when I burst in to tears while being the sole individual looking after my father twenty four, seven for a total of seven years. Yes, I did cry when there was no one to witness it, because I was brought up not to show my emotions which was hard for me. The longer I witnessed what dementia was doing to my father the more emotional I felt which professionals would probably call depression, but for me I think it is just a built in trait I inherited from my mother. I always tried to keep composed and happy around dad, channelling most of my emotions in to the poetry I wrote, but there were times the tears got the best of me and still do. My tears seem to be linked to emotional scenes in movies or TV shows especially when they remind me of my parents. So my advice don’t hide your emotional side which I stopped doing with my father and showed him the love I felt with a hug or a kiss to the forehead like any person who doesn’t hideaway from emotion would do.

4. Feelings of Guilt

So, yes everyone has feelings of guilt. What I found was, as a carer my guilt came and went in waves which depended on the day, hour or minute along with the stages of my father’s dementia. When he was communicating I was fine, but when he was in one of his dormant or not communicable or absent minded phases it was a full onset guilt trip. The guilt stemmed from both the upset of not being able to fix what he was going through and the hidden anger that came with the repetitiveness of dealing with a person whose mind was firing on all cylinders. It doesn’t matter how often you remind yourself it’s not your fault or their fault, those specific feelings will always find a way to catch up with you if you don’t find your release mechanism, thankfully mine was in poetry where I could express how I was feeling. So basically don’t try and hide the guilt, just channel it in to more productive outlets.

5. Fear of Feeling

The fear of feeling is strong! You will always have the love between you and the parent you care for, but there is always those who manage to close of their feelings and turn it in to a list of cold hard facts, for me that was not an option. If anything I feel too much, so what he felt I felt. Some might say they couldn’t be like that, but that is because as humans our biggest emotion is the feelings we have for some one we love and to not show those feeling is hard because we have that inbuilt fear of loss, so we think if we don’t feel, it won’t hurt. My biggest fear of feeling was the fact that I am divorced with no kids of my own and I am an only child born between two generations which meant the generation of cousins I grew up with were all ten or fifteen years older with extended families of there own, so with dad’s death I am now alone. But that never stopped me feeling, it just made the bond stronger up till his death. Now I am just thankful for the time we had together in his latter years, My advice take advantage while you can , for when it is over it is over!

6. Churning Stomach

You know that feeling you get in the pit of your stomach when you face the unknown, well increase that fifty fold and that is what my stomach was like on a daily basis. When caring for someone with dementia who you also live with each and every hour of your day is spent with your stomach churning. It is a fact of life that the worry you feel gives you heart stopping stomach churning fits of melancholy whilst you care this is most certainly increased to the point of hysteria some days. Well that is how I felt each morning when I entered dad’s room to wake him. Deep in the pit of my stomach was the realisation that one morning I would find him gone or one afternoon or evening during one of his naps he just wouldn’t wake. My stomach would also flip when he would try and stand on his own in case he fell, it was like watching a movie when you know something bad is about to happen, but have no control to stop it and walking aids were just useless because his coordination was also gone. To me it was having an eighty year old toddler, but never been a parent myself I wouldn’t know if my analogy is correct. Basically what I am trying to convey is that you can try and prevent stomach churning events, yet with all the will in the world you will still have those heart stopping moments while caring for a loved one.

7. Time Stolen Away

There will be the days when life feels like it passing you by, a portion of your existence stolen away. The easiest way to prevent this is to have you time, a time in the day or the week where you forget about caring and do something just for you by getting some external help through family, friends or daycare. The draw back of caring for a loved one is your time is most definitely not your own as you are either at their beck and call or you yourself can’t shut off and are constantly checking they are okay. The problems then come when you start to feel guilty for wanting time to yourself as each day becomes more and more about them, this is when you need to ask yourself if it’s time for care home. For me that was never an issue and I was there till the end when I had that stomach churning realisation that time was up for our combined journey and it was my time to move on alone.

Part One Conclusion

So from the emotional rollercoasters to the inevitable time stolen away from you, there are question to be asked which only you as the carer can answer, no one can make the decision for you. Some people happen on a life of caring while others way up cost, time, ability and whether to them it is worth it before taking the plunge. Myself it was a choice, I was freshly divorced and unemployed while my father was living on his own and not taking care of his hygiene or his flat. He was spending most of his time drinking, so I made the decision to take on the role of caregiver which I did for seven years. I finally found a reason to go on in life after everything seemed hopeless and it was by caring for a father whom I cared for and respected. As the years rolled by we reignited the friendship we had in my teens becoming more like brothers than father and son. The story did not end happily as the dementia did take him from me on June 2nd 2019.

Next Month’s Note for Caregivers – (Carers Guilt list : Part Two – The Guilt of Bereavement).

Ten Tips to Help Caregivers

Becoming a caregiver can be a daunting prospect for anyone, but if you go in to it prepared then it can be so very rewarding and can bring you closer to whomever you care for whether it be your mother, father or another family member.

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.

This is not a full list, just an example of what performing a caring role for a loved one entails.

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)

If they are not, then get an assessment done asap and claim for at least Attendance Allowance (AA) which works out at £59.70 a week for people needing help for either day or night or £89.15 a week for people needing help both day and night. This can help with costs.

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.

Use whichever method you find the most comfortable.

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.

• 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.

Basically you need to plan for future events that removes the stress from your philanthropic endeavour or when the time comes you can no longer care safely for them or yourself.

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.

Basically anything that engages them and stops them becoming stagnant.

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.).

The uses are endless dependant on your knowledge of computers, so check it out and find out if there is a course near you that can teach you what you need to know or ask a family member.

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

• 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:

1. A “Property and Financial Affairs” LPA allows you to deal with paying bills, buying and selling property and managing bank accounts and investments.
2. 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.

All of the above tips are just my own opinion on what I found useful and you are welcome to learn from me or find your own path, but remember every carer will find their situation is different. So the best way to decide if you are ready to proceed is just ask yourself what would your loved one do if the role was reversed, which many moons ago it was when you couldn’t care for yourself till you grew up and as your parents they made sacrifices to look after you. In my opinion it is a small sacrifice to return some of that love, making them feel loved and safe in the twilight of their life. I hope this has helped.

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

• A mental health charity providing advice and support.
• Website: www.mind.org.uk
• Telephone: 0300 123 3393

NHS Choices

• NHS website providing information and advice on NHS services, healthy living and a wide range of health conditions.
• Website: www.nhs.uk

Revitalise

• 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

Stroke Association

• 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

Turn2us

• 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

Five small reminders for you think about

• 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

Signs of Dementia

The Three L's