It is said that the first casualty of war is communication – any form of dementia is an assault on the brain, and, true to the saying, loss of effective communication can cause numerous extra difficulties, as if having the disease, or dealing with a sufferer, is not hard enough.
SMIL (for new readers my step-mum-in-law, seventh family member or friend diagnosed with dementia) has lost her words over the last year and can now only make noises. I still telephone her every day but it is not just her inability to respond that causes problems. The care home, a business run in a large old building with annexes, modern added wings and a variety of all-era features, is inadequately staffed, and the last manageress, who was profit sharing, left, taking the mobile phone with her.
Realising that SMIL is dependant on the good will and professionalism of the over-stretched staff, I have attempted to befriend anyone who answers the phone, not just for SMIL but genuinely because I believe anyone doing such a difficult job deserves courtesy and respect. This ensures that the start of the conversation will be cheerful, polite and useful, even if it goes downhill later on.
SMIL was moved from a downstairs mixed gender wing, after several incidents when a man resident exposed himself and forced SMIL to touch him. In turn this made her very aggressive, the cause of which she could not vocalise. She is now up some huge Victorian stairs in a large Victorian bedroom of her own. When I telephone, someone has to rush up the massive staircase to see what state SMIL is in, dash back downstairs and, when they get their breath back, report to me. If SMIL is in suitable mode they will shepherd her to the lift, get her down stairs to the office and help her to hold the phone and listen. On a very good day I can get her to laugh. On a bad day she throws the phone, either away or at.
There is a walkie talkie system available so that a member of staff down stairs can ask a member of staff upstairs how stands the world with SMIL, but no one is allowed to use it until there has been staff training, which they don’t have time or staff for.
If you have got this far and you are a regular Dementia Diaries reader (hello, how are you holding up?), you know my views on placing a family member in a care home too soon. Someone in their own home for as long as possible avoids nine out of ten of the above difficulties. Care homes are full of people who need care and are often, aggressive, insane, hysterical and disturbed. That’s why they are there. Whatever problems your demented person has, placing them in a care home will undoubtedly add to them.
In dementia, when the first noticeable defect is memory loss, successful strategies throughout the disease often involve taking account of this defect and accommodating it. For someone with dementia, something new is often very difficult to make sense of. Old memories are stored in a different part of the brain from new memories and are more easily accessed and understood. Therefore a very predictable daily routine helps the sufferer to know what is going on and be less aggressive in the face of bewildering new developments. If you are the carer, aim for clockwork boring as soon as possible after diagnosis.
When I talk to SMIL I have a recipe for the one-sided conversation that is set like cement. First there is a greeting, often repeated until the noises coming the other way indicate recognition. Then there is a segment about the weather, because I’m British and so is SMIL, then there is a plentiful helping of what I’m doing currently, what family members are up to and finally a heaping helping of the grandchildren. They are my grandchildren and therefore SMIL’s step great grandchildren. They are seven and six. Then there is an enquiry about SMIL’s health. I instituted a system early on: I ask if SMIL is in pain anywhere and I ask her to make a noise if she is and then I wait. If there is a noise response I go through a brief list, based on my knowledge of what might be wrong. SMIL has had a hip replacement and a knee operation, either of which can cause pain in cold weather, she has had a prolapse, caused by constipation (which is exacerbated by some medication and constant immobility) and is now incontinent, which can cause skin irritation. I ask questions slowly and gently, in appropriate and polite language. I ask if SMIL would like me to get someone to help and if she would take some medicine. If there is a response I never fail to report it to the office after the conversation and make sure by polite and non accusatory follow-up (bearing in mind the staffing levels) that action has been taken.
Back at SMIL I end the conversation with expressions of love from all and sundry and say goodbye several times and wait; occasionally SMIL is able to say ‘bye for now’ back again.
The telephone calls have a couple of purposes. First and most importantly they remind SMIL that she is not forgotten and still part of a family. Imagine how you would feel if you discovered you had a worsening brain disease that was going to kill you, and then you were abandoned by your family or friends. You can take half of that pain away by staying in contact, regularly, remembering that memory loss is part of the disease but that clockwork boring is the antidote to that.
The second important purpose is to find out if someone who cannot express themselves, is in pain. The staff are busy and, in her right mind, SMIL was very much the sort of person who didn’t like to bother the doctor, or who would put up with a headache, hoping it would go, rather than take a pill. She is on permanent painkillers but changes in the brain could make them ineffective. To make this communication useful, and ensure SMIL has the confidence to tell me if there is a problem, I always follow up. SMIL knows by boring repetition that if she tells me there is a pain somewhere, someone will do something about it. This in turn makes her less aggressive and easier to deal with, which has beneficial implications for the staff caring for her.
I send cards I have made, family photographs and sweets every week. I am told the cards are all around SMIL’s bedroom, she has only to look to know she is not forgotten.
I find bad phone calls distressing sometimes. I do breathing exercises to calm myself, I do a workout, I get out in the garden. I am living with an alcoholic, on a bad day I can be upset on the phone, put the phone down and be verbally attacked in the house. Anyone surrounded by difficult people needs to find ways of diffusing stress that work for them. A hobby, something creative, physical effort, meditation, another place to put your weary head.
Helping demented people does not get easier, everyone is an individual, even in dementia, and and can react in unusual and unexpected ways. I am told that SMIL bites and scratched the carers; she was the last person in the world you would ever think would do such a thing. I always apologise to the carers on SMIL’s behalf, because she would do that in her right mind.
And that’s what it’s all about really, using your mind which is working right to help someone whose mind is working wrong. Doing whatever beneficial thing you do as a habit so that your sick person knows that in a bewildering world they can depend on you.
If you read Dementia Diaries because this is your problem, you are in there bravely tackling the problem and haven’t run away. This makes you a good human being. Well done, good human, if you’d like to email me and let off some steam just click on ‘Leave a comment’ below.
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