Caring for the Elderly: Part 11
I last wrote a post about “caring for the elderly” in February. There have been significant changes in my family's fortunes since then and like anyone in a caring situation, the lockdown has had a major impact and sadly not for the good. As ever, I choose to recount my own experiences in the hope that they may be of some use to others who are in a similar situation. So to begin with, my Mother went into Respite Care just as the pandemic was hitting the UK and the lockdown was being implemented. Hence her stay in a nursing home was not the best experience. All the additional social activities usually on offer were suspended so all she effectively did was swap one sick room for another. She came back home just as my sister moved from working in London to working from home. Hence from March onwards both her and I have been caring for both my disabled parents on a daily basis. However, my sister has had to hold down a job at the same time.
I last wrote a post about “caring for the elderly” in February. There have been significant changes in my family's fortunes since then and like anyone in a caring situation, the lockdown has had a major impact and sadly not for the good. As ever, I choose to recount my own experiences in the hope that they may be of some use to others who are in a similar situation. So to begin with, my Mother went into Respite Care just as the pandemic was hitting the UK and the lockdown was being implemented. Hence her stay in a nursing home was not the best experience. All the additional social activities usually on offer were suspended so all she effectively did was swap one sick room for another. She came back home just as my sister moved from working in London to working from home. Hence from March onwards both her and I have been caring for both my disabled parents on a daily basis. However, my sister has had to hold down a job at the same time.
Both of our parents have noticeably declined both physically and mentally during the lockdown. The mobile library service has been suspended and family and friends naturally have not been able to visit. My Mum and Dad have a long list of low level medical problems that are usually treated at home. The Podiatrist and the ear clinician have both been absent for the last five to six months. However, there have been a few minor victories. I finally managed to get both parents dealt with by the same care company which has made scheduling visits a lot easier. This particular company has been quick to move to a phone based app, so I always know who is coming and at what approximate time. My Mother now also sees the district nurse team due to several foot injuries not healing properly. But even these two improvements to the situation do not greatly change the overall outcome. Both parents have a poor quality of life. My Mother spends the day in a chair and is simply fed and medicated. My Father is washed, dressed and placed in front of a TV for most of his day. They cannot do anything else without the assistance of several able bodied people.
However in the last calendar month there have been several radical changes to both my parents conditions. My mother has been getting community physiotherapy at home, where they have been attempting to improve her mobility. It is somewhat belated, considering she fell and broke her arm in late November last year. But that can’t be helped. Over a series of visits and physical tests it has been determined by the senior physiotherapist that although she can lift herself up out of a chair and stand, her knees cannot sustain her walking for more than a step or two. As of today she has been officially classified as immobile and will never walk again. Due to her hearing issues she was aware of some of what was discussed with her. But once the therapist left, I had to tell her in simpler terms that she could no longer walk and in doing so took away the last vestige of hope she’s been clinging to for the last ten months.
My father contracted another UTI in early August and went into hospital for five days. After treatment with antibiotics he met their criteria to be sent home. I was surprised and concerned by this decision. Just under two weeks later he developed sepsis and was rushed back to hospital, where we were told to expect the worse. However, contrary to medical expectations he has pulled through this life threatening situation. Sadly this has been achieved at a significant cost. His already diminished health has taken a further turn for the worst. He is now diabetic and can barely walk using a frame. He may also have long term renal problems. While he’s been in hospital my Sister has gotten ill. She suffers from Ulcerative colitis and is enduring the worst bout she ever had at present. She cannot do any caring task and now needs to convalesce herself. I have an ongoing injury with my left elbow and have now been told that the tendon may rupture if I do not rest. Effectively there are now three people in need of 24/7 care and I can no longer cope with such a situation.
Today, I visited my Father in hospital for the first time in nearly three weeks. I had to explain to him the significance of his change in health and the simple fact that he cannot be safely cared for at home. My Sister and I can no longer carry out our current caring duties and that after four and a half years there needs to be major changes. Effectively I told my Dad he needs to move into a nursing home to get the care he requires. I am fully aware that this is not an option he wants but he has decided to do it for his own good and that of the family. However, as you can imagine this was not an easy conversation to have and it was very traumatic for both of us. He is no longer engaged with his life and wants the current situation to end. I suspect that the stress and anxiety of a move to a new environment such as a residential nursing home is not going to be without consequences.
The events that I have recounted are far from unique to my family. Here in the UK we have an ongoing crisis with regard to adult social care. Improvements in medicine have extended life expectancy but there has not been a reciprocal change to social attitudes or government policy regarding dealing with the realities of an extended lifespan. The default position seems to be “life regardless of quality”. Both my parents are ill, tired and have little or no quality of life. Yet they are forced to endure a patentantly untenable situation because there is no mechanism to deal with it in any other fashion. Setting aside the loaded issue of “euthanasia”, all carers potentially face a situation where the demands placed upon them become impossible and they need to stop. Yet, we do not live in a world where there are universal, commonly accepted policies and social attitudes as to how to address such problems. Hence an already complex matter is further compounded by guilt and organisations with their own agendas and motivations. Social Services doesn’t always want the same as what the carer or patient wants.
Drawing upon my own first hand experiences, I would say the following to anyone who has chosen to care for an immediate family member. Once you have decided to embark on such a path, it is perfectly fair and justifiable to set parameters to your care and to consider the future. Caring is an act of love, compassion and often practical necessity. But it is not a wheel to break yourself upon. To be an effective carer means you have a duty to look after yourself as well. Help is available but you often have to actively seek it out and utilise it. If you qualify for assistance from the state or local authorities then take what is on offer. You deserve it and have paid for such services through taxation. Come to terms with the realities of old age and chronic illness. Things will inevitably get more complex and there will ultimately come a time when you can no longer provide effective care. You will have to defer to more specialised bodies. When this happens you will need a suitable exit strategy.
Of course all of these things are far more difficult to deal with in reality because you will be living in the middle of these events and emotionally caught up in them. But if you consider the bigger picture and make some preparations in advance, then may be when you reach the day like the one I’ve had today, then it may not be quite so traumatic. Sometimes you have to recognise that there isn’t always an optimal outcome. It may come down to choosing the least bad option from a very poor selection. Reflecting back upon many of the talking points that have arisen out of previous “caring for the elderly” posts, I do think we need to change as a society and not be so fearful of talking about old age and end of life care. We should encourage a healthy discussion of these issues among the young, so that they are more aware of what lies ahead and able to make suitable provisions. Perhaps it will then make the problems that arise in our autumn years less surprising and overwhelming.
Caring for the Elderly: Part 8
I started writing this series of blog posts when I first became a carer back in 2016. The idea has always been to use my personal experiences as a point of reference for others. That is the main reason for this latest update. The things that are currently happening to me and my nearest and dearest may happen to you and yours. Over the last three years a lot has changed in my family’s collective life. Both my parents have gone from living relatively independently and managing their own affairs, to becoming disabled with long term degenerative medical conditions. Both are now housebound and require assistance with basic tasks such as washing and dressing, due to reduce mobility and frailty. My Father has been nil by mouth for three years and requires district nurse visits twice a day to deal with his medicine and catheter. My Sister has altered her working hours so she has more time available in the morning before she goes to work. I have given up work to become a fulltime carer. Between us the days is covered. The latest major change has been applying for power of attorney, which I wrote about in my previous post.
Queen Elizabeth Hospital. Woolwich
I started writing this series of blog posts when I first became a carer back in 2016. The idea has always been to use my personal experiences as a point of reference for others. That is the main reason for this latest update. The things that are currently happening to me and my nearest and dearest may happen to you and yours. Over the last three years a lot has changed in my family’s collective life. Both my parents have gone from living relatively independently and managing their own affairs, to becoming disabled with long term degenerative medical conditions. Both are now housebound and require assistance with basic tasks such as washing and dressing, due to reduce mobility and frailty. My Father has been nil by mouth for three years and requires district nurse visits twice a day to deal with his medicine and catheter. My Sister has altered her working hours so she has more time available in the morning before she goes to work. I have given up work to become a fulltime carer. Between us the days is covered. The latest major change has been applying for power of attorney, which I wrote about in my previous post.
My Mother will be 89 in October and my Father 90 in July. Medically speaking, neither of them has anything exceptional wrong with them. Both are afflicted with common ailments associated with old age. Heart issues, loss of hearing and eyesight as well as ever decreasing mobility. Both have had at least two strokes. Take anyone of their health problems out of context and they may well sound unremarkable, even trivial. But collectively they are difficult to manage. And physical issues are only half the picture. Old age, illness and a loss of control bring a wealth of mental and emotional pressures. My Mother is exceedingly skittish and finds the continual coming and going of carers, nurses and social services very upsetting. My Father, who has always been a very academic man is no longer able to pursue his passions. He can no longer read, write or use a computer. His mind is sound but his ability to do anything is greatly diminished. My Sister and I manage many things but if there is an area that gets somewhat sidelined it’s social interaction. We’re always doing things and my parents do not see enough new faces.
Caring of this kind is a difficult task because the most you can ever hope for as a carer is to maintain the status quo for as long as you can. Friends and colleagues are very kind and supportive, but comments such as “I hope (insert parent’s name) get’s better” are ultimately pointless because neither of them ever will. Their respective health will continue to decline over time and with each additional infection or bout in hospital. As a result of this things have reached a point now where it is proving extremely difficult to manage both my parents care simultaneously. A back injury has made my Mother even less mobile than normal. For the last five weeks she has been unable to get out of her bed and chair unassisted. Her regular trips to the toilet have meant that someone (mainly me) has to be present in the house at all times. My Father contracted yet another urinary tract infection (the third this year) at the same time and became prone to falling. This and the accompanying bowel incontinence proved very problematic. The infection ended with a hospital admission, two weeks ago.
Wilmington Manor Nursing Home. Dartford
Due to the pressures on the NHS, the hospital was keen to discharge him as soon as possible. However, my Sister and I simply could not deal with his return as although he was clear of the UTI, he was unable to get up and walk and was still suffering from diarrhoea. Having two immoveable adults in the house, who are both probe to falling when assisted was deemed too much of a risk. So to cut a long story short I contacted social services and “negotiated” some emergency respite care. Respite care is designed to relieve the pressure on carers temporarily relocating the person requiring care to a residential home or facility of that kind. However, although it is an invaluable service, it is not a simple as it immediately seems. Usually, a person does not go from hospital directly into respite care. However, my Father was awarded two weeks last July. However, he got sick 12 days into his previous stay and was hospitalised. Hence, we still had a balance of 6 days outstanding. Thus with a little “persuasion” the new stay was arranged. However, respite care only provides access to a home and nursing staff. Neither social services nor the nursing home take total ownership of the matter. Therefore, I had to pack a week’s supply of clothes, ensuring that they were all labelled. I also had to provide a week’s supply of meds, my Father’s liquid feed, the pump and the “giving sets” as well as a few personal items such as glasses and wash kit. This then had to be shipped to the home which in this instance wasn’t as local as I had hoped. I do not drive. Furthermore, it will fall to me to come to the home on his last day and pack all these items up and return them to his home, ensuring nothing has been lost.
So far, my Father has been away from home for two weeks. He is scheduled to return on May 29th. We as a family are hoping that during that time, he has regained a degree of his previous mobility because if not, then we are facing the same problem we had earlier. IE having to manage two immobile ageing adults. I suspect that if not now, by the end of the year we’ll have to consider the fact that we cannot meet his care needs at home any longer. For his own personal safety he will require the 24-hour attention provided by a nursing home. Naturally, this is a not a decision that is made lightly and comes with a wealth of other issues to consider. Although I want my Father’s care needs to be met, I also have to consider those of my Mother and wellbeing of myself and my sister. It is difficult to make such life changing choices without feeling guilty, that we’re letting him down or that we’re being judged by the various groups and organisations we deal with. Each family that faces such dilemmas must do so in their own unique way. Once the emotional and social concerns have been addressed then it’s time to consider the practicalities of such a choice, such as the financial implications. Nursing homes are expensive.
The UK has an ageing population and we are now entering an era where modern healthcare means that life expectancy may reach 100 years plus. However, the politics and social attitudes surrounding many of the associated issues of increasing old age have not significantly altered. Both my parents are old, frail and demonstrably unhappy. They endure because society feels obliged to help them but has no clear plan as to what to do next. It’s sad to think that the one factor that may eventually force a societal debate on this matter is more than likely to be the economics of the situation. When the cost becomes untenable on the public purse, then perhaps broader options, strategies and ideas will be considered. In the meantime, my family will endeavour to carry on within the confines of their own home. Yet health factors may well change this. Then there are other longer-term factors to consider. I am 51 and may well have to return to some state of employment in the near future or potentially suffer financially in my own old age. Again it doesn’t feel right to put money over other factors but I cannot risk putting my trust in the welfare state. The way UK politics are progressing there may not be one in a decade or so and there may also be considerable economic turmoil in a post Brexit world. For now my family will strive to hold the line.