Friday, 28 June 2013

Becoming a carer is not something you plan for.

At no point in my previous life did I ever plan, or indeed expect, to become a caregiver. I am, by profession, a Graphic Designer, and also spent 26 years as an army reservist (Territorial Army here in the UK, similar to the National Guard in the US).

As a result, I've been pretty active – mountain climbing, rock climbing, skiing, marathon running and mountain biking. I'm a trained mountain leader and a qualified mountain bike instructor, and with the army, could have become a ski instructor.

However, things began to change about three years ago. Mum, who is now 86, was by then living with me, as it was becoming clear that she was beginning to have minor problems looking after herself, nothing major, and for the most part was able to look after herself.

That was fine, as I was away at work during the day, and away with the army most weekends.

Two years ago, things began to change. Mum started to have difficulty with everyday tasks. She became confused when trying to use the stove or the washing machine. She had a fall and broke her wrist. Stairs became more difficult for her to negotiate.

Later in 2011, Mum was diagnosed with vascular dementia. She'd had a minor stroke a couple of years earlier, and this was probably the first indication of what was about to develop. She had also been diagnosed, some years earlier, with hypertension and type 2 diabetes.

Mum had started to wander when alone in our apartment, and on one occasion was found outside, cold and confused. Even though she hadn't wandered far, she couldn't work out how to get back home. I was at work at the time, and unfortunately, where I was then working, cell phones were not allowed.

The caretaker of the building in which we were living, had tried to contact me, but was unable to do so. A message was left on my phone, and I was eventually able to retrieve this at lunch time. It was becoming clear that Mum would soon need to have someone take care of her during the day.

The company I was working for would not have allowed me to work flexibly, and fit work around caring for Mum, so a decision had to be made. I'd already finished with the army reserves that year, so was no longer away at weekends. Now, I had to make a decision regarding my normal employment.

At the beginning of 2012, I left my job, and started caring for Mum. I didn't consider myself to be a caregiver at that point. Mum was still able to walk, and was still able to carry out many tasks for herself, such as washing and dressing.

It was however, becoming clear that we'd need to find somewhere else to live. We lived on the top floor of a three floor apartment building, with no lifts, and the stairs were becoming more and more difficult for Mum to use.

We were fortunate enough to find an alternative ground floor apartment in a small two floor building. The apartment had been built with disabilities in mind, with wider doors and a wet room with level access for wheelchairs. When we moved in, Mum was still able to walk, but just a couple of months later, these adaptations were to prove invaluable.

At the beginning of October 2012, Mum was admitted to hospital, having suffered a TIA. She was discharged after just three days, but her mobility was clearly affected. Over the next few weeks she began to have even greater difficulty walking, and by the time she was admitted to hospital again, in early November, this time with a UTI, she was no longer able to walk.

After spending three weeks in hospital, she was discharged. At home, we now had a profile bed with a pressure relief mattress, two hoists, a wheelchair and a commode. Things had changed dramatically.

It was at this point that my life changed completely. I now considered myself to be a carer. All of the activities I had taken part in before, were put on hold. Any social life I might have had, came to an end.

Mum was now unable to walk, and spent much of her time in bed. When the weather is good, I do take her out in the wheelchair, but she doesn't really enjoy it. She's still convinced she can walk, yet is in fact not even able to stand.

Mum's room has been rearranged to accommodate the bed, commode and hoist. She has a TV so she can watch programs or DVDs. One of her bedroom cabinets now houses essentials, such as medication, continence pads and other equipment such as her blood glucose monitor, in-ear thermometer and blood pressure monitor.

We have home visits from a care agency four times a day to help me with Mum's needs. Washing, pad changing and using the commode. For the rest of the time, it's just the two of us, apart from two budgies and a small parrot.

Visitors, both family and friends, have all but disappeared. They just don't understand Mum's condition, and are afraid because of their lack of awareness of dementia.

Mum is fine in herself, apart from UTIs, which, in the case of many older people with dementia, is quite common. She is still able to communicate, but no longer reads or writes. She does get confused with some words, and this causes some upset and frustration. Her mood really changes when she needs to use the commode. Something she really hates.

The commode has stripped her of some of the dignity she once had. It just doesn't seem right to her, that she no longer goes to the bathroom, something she has done for much of her life. Fortunately, the ordeal is soon forgotten, and her mood changes to her normal sweet and friendly manner.

Keeping Mum occupied is a challenge. She has dolls and soft toys, which she loves, and talks to. I've created an activity box with a wide variety of colorful items, from craft kits, interlocking building blocks, clothes pins, and even colorful shower puffs.

She also has memory box with old photos and items to remind her of her past. These help to jog her memory and get her talking about what she used to do. Much of what she likes to talk about, revolves around a job she had way back in the 1950s, before she was married and well before I was born.

Being in bed for the most part makes eating a little more difficult, especially as Mum now has problems using a knife and fork. Meals are prepared using foods that can be eaten by hand, without the need for utensils, and drinks are provided in sip cups, to minimize spillages.

Of an evening, I sit with Mum watching TV or listening to her favorite music, mainly from the fifties and early sixties. Going out, or eating out is no longer an option. Apart from the visiting caregivers, it's just Mum and me, as usual.

Occasionally a friend does visit, he's going through a tough time himself - his Dad has terminal lung cancer, and is not expected to see the year out. We kind of give each other moral support, and he's pretty much the only one who seems to understand Mum's condition.

My experience of caring for Mum, has taught me things I never expected to learn. It has shown me how rapidly life can change, and how the unexpected doesn't just creep up on you, sometimes it jumps up and smacks you in the face!

My life has changed, and I have changed. In a way, I have cared for people for years, by looking out for junior soldiers in the army. They'd come to me with their problems, and we'd discuss them, but I never expected to end up caring for Mum. You just don't. Mum's are just there, and you always expect that to be the case.

I now do for Mum, what Mum did for me, all those years ago when I was just a child. The selfless devotion she showed me when I was young is now being returned, unreservedly, it is my turn care for Mum. I never planned for it, nor did I expect it – it just happened. Something that happens to many across the world, everyday.

You don't prepare to care - but you can be prepared to care.

Sunday, 16 June 2013

Dementia and the logistics of trying to attend a family wedding.

I've just been set an interesting challenge. One of my cousin's daughters is to marry in September, Mum and I, have been invited to attend. How do I get Mum, living in Sussex, to the wedding, in Yorkshire? Where can we stay?

Mum can't mobilise, so spends the day, either in bed or in her wheelchair. The wedding venue would need to be able to cater for her requirements. Can they?

I've sent an email to them asking about accessibility, the availability of disabled toilets, and suitable accommodation. In so far as accessibility is concerned, they have confirmed that lifts and ramps are available throughout the hotel. They also have disabled access rooms, and one disabled toilet in the public areas. Wheelchair space can be made available in the dining facilities. Disabled accommodation is however sparse, and early booking is recommended.

The venue is a hotel, golf course and country club, licensed to perform Civil Ceremonies and partnerships. I am unable to carry out a recce of the accommodation before the wedding, and it would not be feasible, or indeed fair to Mum, to turn up on the day, only to find the accommodation totally unsuitable.

What are the issues?

Mum needs wheelchair access. - This is available throughout the venue.
Mum needs suitable accommodation. - Whilst available, the are only a few rooms.
Mum needs help eating and drinking. - I would help with this, so no issues.
Mum has continence issues. - A commode would be needed in the room – portable commodes are readily available, so again no issues.
Mum would really need a profile bed with a pressure relief mattress. - The rooms have standard beds.
Mum would need to be transported to and from Yorkshire. - I don't have a wheelchair adapted car, and the journey, in one go, would probably be too much for her.

If the venue cannot provide all of the right facilities, is there a solution?

Having considered the issues, and all the logistics involved, I decided to carry out a little research. If the venue cannot provide all the right facilities, can we take those facilities with us? Initially, this may sound a little drastic, but it's not as drastic as it first appears.

There are, available for hire, a number of suitably adapted motorhomes. They have either wheelchair ramps, or lifts, wheelchair accessible wet rooms, profile beds, and in some cases, ceiling hoists. One of these motorhomes would solve many issues in one fell swoop. It would get us from where live in Sussex, to the wedding venue in Yorkshire. It would provide suitable accommodation for Mum, and alleviate any concerns about the hotel accommodation being unsuitable.

With one of these motorhomes, rather than travelling all the way in one day, we'd be able stop and rest, at a suitable caravan park, along the way.

Once at the venue however, there is another issue. Would we be able to locate the motorhome in the hotel's car park? I doubt it. Fortunately, there is a caravan park within just a few miles of the venue, so that may be the ideal option. We would however need transport between the two, in the form of a wheelchair adapted taxi. Again, fortunately, with both the venue and the park being close to Hull, such taxi services are available.

If the motorhome was hired for a week, we'd be able to slowly make our way back home during the following few days, stopping off at various caravan parks along the way. Turning the problem of attending the wedding, into a nice little break, away from home, for the both of us.

One final advantage of such a motorhome for us, is that we'd be able to take both our little parrot, and two budgies, with us. A great little adventure for all.

All I have to do now, is actually make it happen!

Tuesday, 11 June 2013

The loneliness of a full-time carer

In general terms

Becoming a full-time carer is life-changing experience. We often hear about life-changing injuries, but rarely do we hear about the life-changing role of being a carer.

Where once we were able to work, the needs of the person or persons we care for, often means that work is no longer an option. Interaction with colleagues, both at work and socially, is no longer possible. Socialising with friends comes to an end. Going to the pub, restaurants or theatre, is out of the question.

Hobbies and activities are put on hold. Holidays just don't exist. Weekends, whatever they are, become the same as every other day of the week. Caring doesn't stop at 5pm on a Friday, and resume at 9am on a Monday, in fact it doesn't stop at all.

Sometimes, if the person cared for is unwell, we may have to stay up until the early hours of the morning waiting for an out-of-hours doctor. On other occasions, at night, we may have to tend to the needs of the one you love, such as "commode duty", reposition them in bed, and make them comfortable, or administer any essential medication. We need to be available, at any time, night or day.

As carers, the only people we may see throughout the day, are the carers who come in to help. As the main carer, this doesn't provide any form of respite, as we are also there to help. In between these visits, there are all the other tasks that need to be carried out. Preparing food and drink, administering medication, cleaning, washing, and assisting, in a variety of ways, the person we care for, when needed.

If it is possible to leave the person we care for alone, it is usually only for a short period of time, time in which we do essential shopping, collect prescriptions, or post mail. Or, we may take them with us, more often than not, in a wheelchair, encountering all the obstacles, attitudes and difficulties involved, when shopping with someone, who is wheelchair bound.

For the most part, as carers, we are effectively "held" in solitary confinement. Few people, apart from the carers, visit. Few people phone, many just don't understand what we, as carers, are doing, or don't understand the illness the person we care for, has. Society, as a whole, just doesn't understand a carer's role, we are often stigmatised - too lazy to work, benefits scroungers, opting for an easy life.

If only they knew! As carers, we are paid a pittance, if anything at all, we take a massive drop in income, we work unsociable hours - we work many more hours than those in full-time employment. Why? Because we care! And we love the person we care for.

We sacrifice many things that non-carers take for granted. A quiet evening in, having a drink with friends in the pub, going away for the weekend, taking a holiday, or just going for a stroll in the countryside. None of these options are open to a full-time carer.

A personal point of view

I sacrificed my career, and I sacrificed the things I enjoy most. I love mountain walking and skiing, yet have no chance of doing either for the foreseeable future. I have a car, but cannot afford to run it - where would I go anyway? I can only leave Mum for about half an hour. I could take her out in the car, but due to her limited mobility, this would cause distress, when transferring her in and out. So, it's really not an option.

The last time I went out with friends, was when Mum was in hospital, last November. Only one friend ever visits, and since moving slightly further away, even these visits are now few an far between. The phone calls I receive, are either people trying to sell something, or the occasional calls from health and care services.

Family members living in the area, have all but disappeared. For most of the time, it's just me and Mum, our little parrot, and two budgies. That's my life now. Because I love my Mum, and because I am the only one there to care, I do it unreservedly. Knowing she is happy, safe and comfortable, is worth more than anything else in the world.

And, thankfully, blogging, Twitter, and the CarersUK forum helps me maintain my sanity.

Tuesday, 4 June 2013

Being a male carer just ain't macho! Think again!

Many still regard caring as being a woman's role, this is far from the truth. In the UK, well over a third of carers are male. Being a male carer brings challenges, challenges that may not be encountered by female carers. I am a male carer, and I care for my 86 year old Mum, who has vascular dementia.

Let me first tell you a little about myself. By profession, I'm a Graphic Designer. Also, until a couple of years ago, I was an army reservist (Territorial Army here in the UK - similar to the US National Guard) for 26 years. I've lost friends in Iraq and Afghanistan, and have been to the funerals of people who were taken from us, far too early in their lives.

I love mountain walking and climbing, rock climbing and abseiling (rappelling). I trained as a mountain leader, and have helped at charity events taking groups of fund raisers over parts of the Alps. I also love skiing.

I've run the London Marathon, and raised money for Marie Curie Cancer Care in memory of my late father – another military man, who also served for 26 years, in the regular army. We both reached the same rank of Warrant Officer Class 2.

As a child, with Dad being in the army, we spent a lot of time abroad, mainly in West Germany and West Berlin, and also Gibraltar. In fact up to the age of 15, I had spent more time in Germany, than in the UK.

Chances are, I've done things that a lot of people will never get to do. All of this is now on hold. My life, for the time being, is dedicated to the one person I care for most, my Mum. She brought me into this world, and showed me the love and affection, only a Mother can. It is now time for me to do the same, and care for her.

I never planned to be a carer, and never prepared myself for it, the role just gradually took over. I never married, that's not to say I didn't get close – I did, a couple of times. But, ultimately, I remained single.

So here I am, a single man, and only child, caring for his Mother. How do others view this? From my own point of view, some regard what I do as admirable, they're aware of the work involved, and how little we carers, male or female, are rewarded for it. Others may say the same, but soon disappear from your life. Some may think it a little odd. Others think it's just wrong!

Men become carers for a variety of reasons, some, like me, care for elderly parents. Others care for their partners, whilst many care for their children. Caring has, for far too long, been viewed as being a female role – this just isn't true, men have been caring for centuries. In fact, probably for as long as the human race has existed.

Yet, in our so called modern liberal society, men as carers, are still viewed with suspicion. There is still too much stigma attached to men in caring roles. This stigma extends beyond the role of men as carers for loved ones, many men, carrying out what are perceived to be female roles in the Medical and Care professions, are viewed in the same way.

Men who care for loved ones, are more likely to feel isolated. Men are less likely to ask for help, find it harder to express emotions, and more difficult still to share their caring experiences. Caring just isn't macho enough. Isn't it? Until any man has carried out the duties of a carer, who are they to judge their fellow men?

Caring is not easy, and the role for men is harder still. Nurturing and caring is not considered to be a natural male role in many societies. When man was a hunter gatherer, the caring role was left to the females. When man became a keeper of animals and sower of seeds, the caring role became less clearly defined – both men and women would share many tasks. From working on the land, to bringing up families. Several generations would work together – caring for each other.

As the population grew, and towns and cities developed, the role of men changed. In these towns and cities, many occupations were male orientated, it was the men who went out to work, whilst the women stayed at home, bringing up the families. With the industrial revolution, this changed again. Women and children also went out to work - in mills and factories. Yet it was still the women, who were expected to carry out all the domestic tasks, as well as bring up the family, and care for elderly parents.

Times have changed – or have they? Yes, men and women now do similar jobs, but in many areas, men still vastly outnumber women. We are not yet the modern liberal society we'd like think we are. Oddly enough, and from personal experience, in this area the armed forces are considerably more advanced, than many other parts of our society. Whilst a woman has yet to achieve the “top job” - apart from HM The Queen, as Commander in Chief, that is - many women have achieved the rank and status, once thought to be a purely male preserve.

So, we accept quite easily, that a woman can carry out a similar job to men, yet we still find it hard to accept, that a man can do a “woman's” job. Caring is not just a “woman's” job. Men are equally as capable of carrying out the task. Yet society has conditioned us to believe that such a task is part of a woman's domain.

Then of course, there are those certain duties we male carers have to perform. Whilst it may be perceived to be quite acceptable for a husband to carry out certain personal hygiene duties for his wife, when these are carried out by a son for his Mother, attitudes change. Few think twice about a daughter carrying out such duties for her Father, but a son for his Mother? Now that really is wrong! Surely?

Admittedly, when I first had to do this for my Mother, I felt very uncomfortable about it. Now, however, it's something I just do. It is necessary, necessary for her health and well being. It has to be done, and I don't have a choice – I have no else to do it for me. It is not, however, a subject I would feel comfortable discussing, nor, should I imagine, would any other man.

After finally realising I was a carer for my Mother – I initially found it difficult to tell people about it. I was concerned about the way they would react, or what they would think. Fortunately, we now live in a small community with a higher than average number of elderly and disabled people. Attitudes here, are more understanding, people are more open, and very few judge.

Unfortunately, the same cannot be said of all communities. For many carers, regardless of gender, admitting to others they are carers, can be difficult. There are still many stigmas attached to caring, from being regarded as benefit scroungers to being just too lazy to work.

Yet many carers do work, and those who don't, are likely to dedicate many more hours to caring, than the hours worked by someone in a 9-5 job. For many, caring is 24/7, not 9-5. Carers save the UK government around £100 billion (US $153 billion) a year, almost the same amount as the entire annual NHS budget.

If you are a male carer, and want to share your thoughts and experiences, let me know.

Monday, 3 June 2013

Hospitals don't understand the needs of dementia patients

Many elderly patients in hospitals have dementia, yet in all but a few cases, this is rarely taken into consideration. In an ideal world, the following would alleviate some of the issues experienced by such patients, and their families.

1 Admission avoidance should be a priority

Wherever possible, admission to hospital should be avoided. A dementia patient will feel safer and happier in the familiar surroundings of their own home. They will also be attended to by people they already know, rather than unfamiliar hospital staff.

2 Dedicated dementia reception

If admission to hospital cannot be avoided, then the dementia patient should be admitted via a dedicated dementia reception area, and not Accident and Emergency. Accident and Emergency units are too busy, too noisy, and can cause additional, and unnecessary distress. The dementia reception unit should be furnished with beds, not trolleys, the patient's comfort should be a priority.

3 Fully dementia trained staff

Staff, both within the dementia reception unit, and subsequent wards, should be fully dementia trained. Dementia patients have special needs, needs which are not well understood by general hospital staff.

4 Dedicated dementia wards

There should be wards in hospitals specifically for dementia patients. The layout, decor, equipment and facilities on these wards, should be designed with the dementia patient in mind. The atmosphere should be calm and friendly.

5 Special needs should be catered for

Staff need to be on hand, to cater for the special needs of dementia patients. Assistance with eating and drinking is essential where required. Continence issues need to be dealt with promptly. Visiting times in such wards should be flexible, in order to suit the requirements of both the patient, and their carers and family. Carers should also be involved in the caring process, and be consulted, by hospital staff, regarding such care

6 Planning for discharge and rehabilitation

Planning for discharge and rehabilitation, along with continuing care, should begin as soon as the patient is admitted. Regardless of the diagnosed outcome, where possible, patients should be returned to their home as soon as it is viable to do so.

My own, and my Mother's experience in this matter, was an unnecessary extended stay of 7 extra days, after she had effectively been discharged, on paper, whilst care and equipment was arranged.

7 Discharge should be rapid

Once discharge has been confirmed, the patient should be returned home, quickly and without complications. All care and equipment should be in place. Discharge should also take place during the day, and not at night.

8 Continuing care and follow ups

Social Services, District Nurses and GPs, should ensure that any follow up visits are carried out, and that a programme of visits is in place, to ensure that the patient's health and care needs are being catered for, and continue to be so.

Saturday, 1 June 2013

Living with dementia - my lovely Mum

This is Jean, my lovely Mum, who was diagnosed with vascular dementia in late 2011.

I'd like to introduce my lovely Mum Jean - she's 86, and has probably been living with dementia for at least three years. She'd had a mild stroke, some years before, and this was very likely the first indicator, that dementia was just around the corner.

Though Mum was diagnosed with vascular dementia in late 2011, there had already been many signs that she was developing some form of dementia, before the diagnosis.

She would have problems with the cooker or washing machine, declaring that she'd never used "one like this before". In her mind, that was probably quite true.

When supermarket shopping with her, she would linger at various points, pick something up and place it in the trolley - whether she needed it or not. More often than not, the item was not needed, and never eaten or used. I'd try to persuade her that she didn't need it, but that would be met with the usual irate response, "it's my money, I'll buy what I want!" or "you never let me buy anything I want."

As time progressed, her walking became slower and more laboured, and she started to develop the early signs of the dementia shuffle. By the end of October 2012, she had all but lost the ability to walk. She was now living with me, and I was her carer.

Though her dementia has seriously affected her mobility, she still retains remarkably good communication skills. Only this morning, she surprised both me and her agency carer, by using the word "concientious" during one of our conversations. She is however, unable to keep track of the conversation, and will often continue talking about a previous subject.

Whilst she can eat and drink without any chewing or swallowing issues, she has difficulty using utensils, and for the most part now only uses a spoon. Drinks are provided in sip cups, in order to minimise spillages.

The concept of time has been lost, but through a set daily routine, she still manages to sleep well at night. I've also used a Digital Photo Frame to create a Day Clock for her, to provide a visual prompt, and help her to at least understand which day it is and which part of the day it is (there's a link top right to my blog about this).

Mum has continence issues, and needs to be transferred to the commode when required, or have pads changed when needed. To shower, she needs to be transferred to a wheeled shower chair. As her son, such duties were initially difficult to accept - now, I'm used to them, and don't give them a second thought.

Throughout all of this, Mum has retained her wicked sense of humour, and enjoys watching older, 70s and 80s, comedies on the TV. Occasionally she gets confused, treating people on TV as if they're in the room with her. She will often get angry with them, and shout at them. If she gets too agitated, I change whatever she's watching, usually to something like an Andre Rieu concert, on DVD, which she loves, and calms her down, almost instantly.

She has her collection of cuddly toys, including two small baby dolls. She talks to them all, and tells them that "Mummy loves you". She gets upset if she doesn't know where some of them are, especially the baby dolls.

Mum and Dad at their wedding in 1955 (Dad passed away in 1994)

Like many living with dementia, she frequently wants to "go home", and visit her Mum. This was difficult for me to handle when it first happened. Now, I play along with it, tell her I'll phone her Mum to find out if she's in, in order to settle her, eventually she forgets all about it, and carries on as before.

This is just a small insight into my Mum's continuing journey with dementia, hopefully it will help others understand a little more about the condition so many now find themselves living with.