What’s the point? (Don’t worry – there is one)

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The current situation with Mum is that she remains at home, quietly withdrawing from the world. Dad now has a wheelchair-compatible-car, she has a wheelchair, compatible with a wheelchair-compatible-car (not a foregone conclusion it would appear) and they have a hoist, an easy access shower, a toilet seat raiser and a mechanical chair and bed which allows a fairly easy transition between. She has carers from The Bluebird Agency (every one, without exception, complete bloody superstars) for an hour in the morning – they get her up, washed and dressed. Alison comes twice a week to take Mum out to get her hair or nails done and my sister and I visit when we can.  This is the entirety of her world and she is comfortable and peaceful within it. She sleeps a lot, she sits quietly for the remainder of the day and she sometimes smiles. She enjoys her meals, she doesn’t like her nails being cut but appears to experience neither significant distress nor overwhelming happiness. The range of her emotional experience is narrow but her mood usually sits somewhere around contentment. So we are at another plateau. Nothing bad is happening.

As discussed previously, this is the time that one needs to think about planning ahead. Much better to do it in a period of relative tranquility, and thus Dad has been trying to motivate himself to look around residential homes again, just so we know what resources are available if they are needed. We may get to a point where Mum is completely immobile and has greater need in terms of number of carers and frequency of visits. Currently Mum’s care package (when one factors in the above appliances, agency fees and occasional respite at the ‘nice nursing home’ out of town) run to a similar cost as privately educating a child at one of the more exclusive public schools – if this cost increases it may be difficult to afford to keep her at home.  It may also become too difficult to manage her care at home although at present I find it hard to believe that she would be capable of being difficult, challenging or any of those other pejorative terms that the dementia community rightly find degrading. She simply doesn’t have the physical strength to wander off or assault anyone and she has such reduced vocal capacity that she couldn’t insult or hurl abuse at a carer. Her ability to ‘misbehave’ is limited and in saying this I am neither trying to be offensive or wanting to belittle the experiences of those who do care for people with more complex needs.

She is happy. We are lucky.

 

Nonetheless, it is important that we investigate other avenues, just in case. The battle has always been getting Dad to take the next step (whether it be taking away the car keys, employing a cleaner to help around the house, or moving to downstairs living). So there have been conversations taking place and today the subject of visiting people in nursing homes came up. Dad’s question was ‘What would be the point?” – if Mum was so reduced in her circumstances to need residential care would she gain anything from seeing us? Would she know whether we had visited or not and would she care either way? Whilst I agree with the question and understand the reasons behind it, I think that there are hidden advantages of maintaining a frequent visiting schedule, even if the person you are visiting is completely oblivious to your presence:

  • Taking kids into a Nursing home is good for them and good for the other residents, even if Mum doesn’t recognise her own grandchildren from Adam. Nursing homes can be scary places. Often people have never set foot inside one until they need to consider their own care or that of a loved one and it can be an assault to your senses; the noise, the smell, the institutional feel. I imagine it is similar to visiting prison, hospital or, to use my previous example, an exclusive boarding school. These places have their own individual character and can be intimidating if one is unaccustomed to them. So, normalising it; making the building and the rooms familiar to children is a good thing. It broadens their range of experience, it introduces them to how we care for our elderly and frail and it reduces the secrecy and stigma associated with shutting people away, out of sight. Additionally, the benefits to other residents of having children around are enormous. Toddlers and teenagers provide variety; new noises, new smells and new sensations in an otherwise limited environment. So yes, I will be taking the kids to visit Granny if we ever get to that point – and I will make sure that they have an activity to focus on when we see her. I might ask them to read to her, play her a piece of music or draw a picture. We might wheel her into the garden or sit in the communal area to finish a homework project but I recognise that there needs to be a purpose for the visit rather than simply sitting waiting for some piece of existential wisdom to emerge from Granny’s mouth or to witness any evidence that she is actually pleased to see us.
  • Regular attendance from family members is an indication to the care home staff that this person had other shit going on in their lives prior to this juncture.  Of course, staff know this already, but even as a visiting GP it makes me view a patient slightly differently if I see them when their wife is in the room, or if their niece has just left and passed a message to the nurses to ask me about their cough. Knowing about the existence of a support network puts that person in context and, whilst I am not suggesting that staff would knowingly treat a resident better if they were expecting a visitor, there must be an element of wanting to actively demonstrate the family that the care being provided is good. Do residents who have no visitors receive a poorer standard of care? Probably not – but it can’t hurt to focus the minds a bit.
  • Regular involvement and good communication between family and care home staff reduces the likelihood of inappropriate decisions being made. An inexperienced nursing auxiliary faced with a deteriorating patient in the middle of the night is much more likely to call an ambulance and have that person admitted to hospital if there hasn’t been a clear message from the family that this is not what the person would have wanted. If however, this message has been documented and reinforced through numerous recent visits, the nurse in charge can say, “Oh, well – her son was in today and he knows that she’s becoming more unwell, but he was very clear that she wouldn’t have wanted to go into hospital.” It is then a lot easier for staff to use their clinical judgement, make the patient comfortable and get them assessed on a routine visit from the GP the next day when a more informed, less ‘knee-jerk’ decision can be made.

 

I remain hopeful that we may not ever need to put Mum in a home. Having seen her over the past few weeks I think she is slowing down completely and she may just quietly doze off in her chair one day and not wake up again. It would be classic Mum to pop her clogs without a fuss and a drama. But equally, she’s still young and her body may continue to function for many, many years – so we need to have a plan. And if that plan, for whatever reason, ends up involving residential care, I hope I will be able to visit regularly and that my children will feel the same. I make no judgement on others – sometimes visiting a loved one may be just too distressing for those who are left behind – but I would say that there are hidden benefits beyond the need for companionship and that these should be considered when making a decision.

There is a point to it all – even if it’s not immediately obvious.

 

 

2 thoughts on “What’s the point? (Don’t worry – there is one)

  1. Thanks for the continuing story of your Mum. Sorry to see that her dementia is progressing. It’s a few months since I wrote my rant saying how good care homes can be, I promise not to repeat it (well maybe a little). Unfortunately my wife was only in the care home for 2 months before she died.

    What’s caused me to write is your comment “We are lucky”. It’s something I’ve said all the way through to the disbelief of non-carers. My wife understood and accepted what was happening to her, her personality didn’t change, she still enjoyed the same things although in a different way, she even retained her intelligence but with no memory to back it up. Each time we went to a dementia event we saw people who were worse than us and thought that if they can manage so can we. It was only after she died that I found that these same people thought the same about us.

    We were lucky that her last day of life was enjoyable and dying was not prolonged. According to the staff she had been “having a whale of a time”. She and a few others had invented a singing game, rules were nebulous (they couldn’t remember them anyway) and they just enjoyed themselves like small children without a care in the world. At meal time she was off her food. The nurse came and called the doctor who called the ambulance. Within hours she was diagnosed as having a perforated bowel and died 12 hours later.

    We were lucky she was in a care home at the time (sorry this is the only mention). She didn’t complain of pain or bloating so I would probably have put her lack of appetite down as “one of those things”. Even if I had suspected a problem I would still be negotiating with the surgery receptionist in the time it took the doctor to arrive at the care home – sorry but that’s reality. Imagine if I had taken her into hospital the next day and someone said “sorry, we could have operated if she’d been here 24 hours sooner”. If your Mum does “doze off in her chair one day and not wake up again” your Dad will be left asking himself a lot of questions.

    A decision I hadn’t expected was the decision to operate or not. The surgeon assumed that as my wife had dementia and lived in a care home she had a poor quality of life (you can guess my answer to that). With only 20% chance of surviving the operation I thought it was worth the risk, but my opinion changed when then he said she would most likely be on a ventilator for the rest of her life. So it was Plan B, lots of antibiotics and hope for the best – but it was obvious that there was no real hope.

    I’ve drifted off topic but would make the same comments about nursing homes as I did about care homes. I agree with your comments on visiting but would add that it is important for you, your Dad, friends and relations to see that your Mum is at least comfortable and preferably enjoying herself. My wife was always pleased to see me but when I appeared she didn’t know if I’d not visited for a week or had just popped to the toilet. I got as many people as I could to visit and what my wife enjoyed most was to show them that she had most definitely not been “stuck in a home”.

    Going off topic again I’ve been thinking what makes a good care home. I’ve dusted off my (very) old psychology notes and rediscovered Maslow’s Hierarchy of Needs. Most care homes provide for physical needs and safety, maybe even belonging. Our nearest care home concentrates on esteem and even achieves moments of self-actualisation. We were lucky – again!!

    If I may be selfish with a final “lucky” about my wife. It was 2am, she’d had 6 hours of being prodded, poked, scanned and treated with everything that could be dripped in. I thought she was flat out for the night as the nurses took her into a side ward to put her in bed (do they kick wives out at this point as well as husbands?). A few minutes later one of the nurses came out and said to the nurse on the desk “She’s a lovely lady, she’s really cheered me up”. Hope someone gives you a soundbite to remember your Mum.

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    1. Thanks David – So sorry to hear of your loss. I can’t imagine how hard it must be to cope with the death of a partner, particularly someone you have been caring for over a long period but it seems that you continued to do your absolute best for her right up until the end and that she benefitted enormously from the care environment provided by you and the home. It’s lovely to hear about anyone having ‘a whale of a time’ on the day they died – dementia or not. Hope the same can be said of all of us, when the time comes. All the best and thank you for continuing to take an interest and comment on the blog. Your experience is really helpful and much appreciated.

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