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Bereavement & Grieving.
Most of us have been through bereavement and grieving ourselves - but some of us, surprisingly, have not. If you have lost people, you tend to think you have some inside knowledge and are in a much better position to help other people. You may not be.
All of us, though, have had experience of losses of various kinds; childhood innocence, a beloved pet, our image of ourself as being in control, a friendship, a family (when you left home), an important relationship - and, as we grow older, our health and youth as well the deaths of parents, partners and friends.
OK. So, assuming you have lost some things, you know what that feels like. BEWARE! You know what it felt like to you, with all your own experience and feelings - how you felt when it happened. Even if something very similar happened to you as happened, or is happening, to another person, you do not know how that person feels.
RULE ONE: It is worse than useless, and even insulting, to tell the person "I understand". No, you don't. I can't emphasise this too much because people say it all the time - and it is just not possible to know how anyone else feels. Feelings are personal and unique. All you can do is "be there" for the person who is grieving.
A number of extra things need to be considered, about bereavement and grief, when working with people with dementia.
The first is that, quite often, relatives will say "she only started to be like this when her husband died" and, as we have said before, there has probably been some covering-up by the now deceased partner. Bereavement is not known to cause dementia - although it is quite likely to make it worse temporarily, as does any change. It seems pointless trying to explain what we think, as professionals, to families who have just had not only a death but also a nasty surprise about the surviving relative. At this stage, they often feel the need for someone or something to blame and bereavement is as good as anything else. They are unlikely to realise, just now, that their dementing relative may very well forget that her husband has died (and start looking for him - or not) or recall that he has "just died" for the rest of her life. These are both situations which can be hard to deal with - and we have to cope with our own emotional responses too. How do you feel about this?
RULE TWO: Grieving is different for everyone - and sometimes it's relief.
The second important point follows from above. How do workers cope with a client who doesn't remember her husband has died? How do they cope with a client who never finishes grieving? How do they, even, cope with a client who is quite exultant that she's finally got rid of the "old bastard"?
The lady with dementia who doesn't remember that her husband has died is much easier to work with than her grieving sister. In the bad old days of Reality Orientation, there would have been a move to make her remember - a searing example of bringing someone back to an intolerable reality. As we have said before, it won't work so why bother? Is she trying to find him? Do you have to tell her he died? No, probably not.
She may be feeling loss but not be sure just what she has lost. This can lead to walking, rummaging and squirrelling, and those other behaviours which spring, primarily, from frustration.
RULE THREE: Give your attention.
You could help her look - you could even "find" some favourite object together. Let her know you care about her and are willing to give her your full attention. Talk about her husband with her, ask her what he did for a job before he retired, ask what he looks like. If he was away during the war (depending on age), ask what she did then. Where were they married? Did she get on with her mother-in-law? You can think of loads of questions if you are properly prepared - by reading the information in her file - and getting to know your client. Use things from your own life too - this is not an interrogation.
RULE FOUR: Distract.
Then, when you have broadened-out the subject (and only then), distract her. The offer of cup of tea (a "fly" cup in Scotland is a "secret treat" and one up on the others!) and, perhaps, her favourite biscuit, can work wonders and further conversation can lead to a very satisfying reminiscence session, bringing others in when you feel it's right to do so. Note, though, that this is not a "one-off" intervention. You need to be prepared to do it as many times as it seems useful!
If your client is one of those who is trying to process grief on a long term basis, things can be much harder. The grief is very real and immediate to her, even if you don't know what it's for, or even if the death or loss was 20 years ago.
RULE FIVE: People have the right to their emotions.
It has been said that distraction is best; that you have to get her mind off her grief by giving her something to do. This sounds OK but there are other issues to be considered here. A person with dementia has, of course, the same right to mourn as anyone else and there could be all kinds of problems if she is prevented. Unfortunately, in the moderate or later stages of dementia (and sometimes in the earlier stages, depending on the pattern of memory loss) she is unable to get through the stages of mourning, involving all the denial, anger, blame etc., and come out the other end with it all resolved.
RULE SIX: Empathise.
I think validation techniques are helpful here - empathise, be alongside her while she cries. For goodness' sake don't tell her there's nothing to cry about - there is. Let her get her feelings out as best she can.
RULE SEVEN: Share the load.
Prepare yourself for repeats of this type of upset from time to time and share the support work with colleagues - no one can stand much of this, on a repeat basis, without being damaged. At some stage, a decision has to be made, on behalf of the client who can no longer make it for herself, that enough is enough (for today, anyway). Work out, with line-managers, supervisors, families etc., how long you are all prepared for Dora to cry. With practise, it should be possible for you to develop a strategy for bringing her out of her mourning. Try her favourite music, a specially made entrainment tape designed to bring her "up"; encourage her to do her favourite thing - whatever that is; give her tea and cake; introduce her to some "new" people (or people she has forgotten she already met) - you will probably find that she will be able to overcome what she is feeling if she is placed in the role of hostess or similar.
This has often worked for us - but, beware, it doesn't always. The alternative is likely to be sedation but think very hard before you decide to ask for this: it almost always isn't and causes more problems than it solves.
RULE EIGHT: Look after your staff.
The most important thing about working with mourning in this way is to be especially careful about the stress on staff, or even on other clients who are present. Best, probably, to have a colleague to work with other clients and do something, almost anything, else. But give the mourning client a lot of high quality time. This is one of the most important things you can do. It may be, I won't say that it has never happened because I believe that it has, that a very caring you and the client can resolve it. But you must protect yourself - by personal supervision and by sharing the work around the team. Some of you will be very good at it and some will only learn to be moderately good - the hard way. You should feel more competent when you have done it a number of times. There is no other way of getting used to it, this is real emotion, real pain - role play doesn't work!
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This is always hard. Most of us have experienced letting go of something; a person who has died, children who have gone to school or grown up, a relationship, something of sentimental value which is lost. It doesn't tend to get any easier- we rarely learn not to be attached to material things or people. [3]
There is, I think, a time when it is right to let go of a parent or partner in order that they should be cared for in a nursing or residential setting. It is the best solution for everyone concerned; the family is no longer able to cope with the extreme stress of a person who is severely dementing, the person with dementia is unable to relate to other people in the house and becomes increasingly afraid and upset. Family carers can be trained to cope better with their dementing relative - I recommend Salix's Intensive Carer Education courses - but, because of their previous relationships, it can be extremely hard for them.
We try, in Carer Education, to prepare carers for the inevitable - either the relative goes into long-term care or dies at home - but there is no way around the basic feelings: a thin, corrosive stream of liquid guilt with intensely sharp shards of grief in it.
When asked whether a friend or relation with dementia has access to any services, people sometimes reply that "it is all right because his wife used to work with people with dementia - and knew what to do. The person who is most unable to work with a relative with dementia is the person who is closest to him.
All the knowledge and experience are as if nothing when it is your husband; your father. Knowing facts and being accustomed to people with dementia is poor preparation indeed. This is the reason why I have never employed, paid or unpaid, anyone who is still caring for a relative or whose relative has recently died. I usually say that I don't want them working out their issues through my clients, and that is true, but the main reason is that their own recovery and emotional health are at stake.
I will generally interview them a year on and see if they still want to help us. Sometimes they do - and if they have worked through their issues - we take them on. Personal supervision, as frequently as it can be managed, is absolutely essential here, though. An experienced supervisor can tell when things are wearing thin and something needs to be done. Anything else is safe for neither the dementing clients, the individual worker - nor even the staff team. Some people offer to help out of gratitude for the help a project has given or, worse, guilt that they didn't do enough when the dementing person was alive. Do not go along with this. If relatives want to do voluntary work, refer them to another project, preferably one with a "client group" as different from people with dementia as possible. There are usually plenty of projects for children which need help; but talk personally to the co-ordinator and explain why you are doing it - best with the person present!
As far as residential or nursing care is concerned, I believe that family carers know when the time has come - which is not to say that they do anything about it.
Lots of people try to manage too long, with terrible effects on their health and relationships, and, because they have felt forced to concentrate exclusively on the person with dementia, have great difficulties in living without them (whether they go into 24-hour care or die at home).
Guilt is a terrible, poisonous thing. I suppose that if you have done something terrible, a murder perhaps or something worse, you should feel guilty - if only to stop you doing it again. In other cases, guilt is almost always of no use to anyone. I have never met a family carer who has had to arrange for a dementing relative to go into long-term care, who did not feel guilty. If I could get rid of it for them, I would.
Most people haven't committed a murder, or even done anything with lasting nasty effects; most people, most carers, have done the best they could, with a pretty awful hand of cards. Yet, there are plenty of people out there who are just dying to make them feel more guilty. I don't quite know what these people, who have no idea what they are talking about, get out of it.
Years ago, I had a youngish secretary who was quite a good-time girl. She came in one day, just a bit worse for wear, and told me that one of her friends (they'd been out last night) worked in the same office as the wife of one of our clients. She had said that, in the office, they all thought that Fiona should give up work to look after her husband. They didn't think it was fair that she should go out every day and leave him.
When I had finished reading the riot act about confidentiality, I asked her what she thought. She had paid enough attention to her dementia training to say that her friends hadn't been through it and so didn't know what it was like.
This client was forty-seven years old and couldn't work (he had moderate early-onset Alzheimer's Disease), and his wife had to go out to work in order to pay their bills. She felt guilty enough about leaving him - one reason why he was in day care and had a Befriender visiting him two days a week - she didn't need any more.
I have also had contact with members of a family who thought that it was not "right" for their mother to come to the day centre. Interestingly enough, it was those members who saw least of their mother who thought this - the ones who did most knew she enjoyed it and it was good for her to be stimulated in this way.
Make no mistake, letting go is hard and carers find it very hard indeed. There are a few things which can help to make it better.
RULE ONE: First, a nursing or residential home is sensible to use the carers' knowledge to help them get to know their resident. You may know all about older people, even all about dementia, but the family carer is the expert on his relative. Use him.
RULE TWO: Make arrangements so that he can take part in his relative's care.
Ask him to parties, encourage him to take his relative for a walk or drive. Never, under any circumstances, use the phrase "when you stopped caring" - this is getting very common now. It has unfortunate implications. Think about it. Talking to family carers can take a long time but it is time well taken. Workers can help them to come to terms with it - remember that it is somewhat like a bereavement but the carer can't go through the stages of mourning and healing either - their relative isn't dead.
One thing family carers can do is to find a residential or nursing home which they like the look of; where they meet the staff and can find out how much input they are to have. It makes it easier on the staff, I've already said that, but it also makes it easier on the family carer. If they can have substantial input into a care programme, and take part in some care tasks, they feel better too. They have not "put their relative away"; they have done the best for all concerned.
It is easy enough to take other people's word for the reputation of a home, or even to look around and see that it is well-appointed, clean and tidy and staff seem friendly. Go under the surface, though, and check whether staff are properly trained (by someone who knows what (s)he is doing and is up-to-date on methods and ideas); whether there are sufficient activities (one part-time activities organiser for a home with 60 people is not enough, neither is a full-time one. You need to know that care staff work with clients too - Activities Organisers, often alone, have an impossible job), whether residents get out sometimes and there is open visiting. Remember that you are paying (even if you are paying through your taxes to enable social services to do so!), and you are not relinquishing control. A good home, one which is fit for your relative to live in, will have a Home Manager who accepts this and respects your wishes as well as those of the person with dementia.
If you relative has been cared for in a specialised dementia project previously, any good project manager should be willing to visit homes with the family carer and help to select a suitable one. Do not, however, expect this person to recommend somewhere directly. Some homes will keep dementia project co-ordinators on their mailing list and some even go so far as to invite them to lunch occasionally. I have never, thank goodness, met a project manager who was willing to accede to this type of tactic. It is bribery and should not be encouraged. The family carer, hopefully with the dementing relative taking part, must make the decision, not a professional.
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This is always hard. Family carers, presumably because they love their dementing relative, frequently feel the need to blame someone or something for their relative's condition. If you are a professional, it will sometimes be you. If you are a manager, it may not be you personally, it may be your staff who get the blame. If you work for the health service, there is no doubt that everyone will blame you at some stage.
I have been shouted at by a number of carers during my career and it is easy to resent it when you have done your best (and, especially, when you know your establishment is streets ahead of those fools down the road!).
One of the times I remember best concerned a daughter of a mother with moderate dementia who was resisting coming out to day care. I had personally taken on the task of trying to persuade Laura to come along - and had, actually, managed to do it twice. The third time, I failed miserably and so did the worker I sent to try again. The client lived alone, so her daughter wasn't able to help. I telephoned her and told her what had happened. She said that she would go and collect her mother. Just before lunchtime, I left the centre to drive to the bank and met Laura's daughter, Carol, outside. She immediately started yelling at me that I was no use to her and she was going to report me. She gave me no chance to interrupt or say anything at all. Then she shouted, rushing away, "Just forget it!". I stood there for a minute to get my breath back, then returned to my office and made myself a cup of tea to calm down.
When I returned from my banking, I telephoned Carol and said, "Please don't hang up!" before she could say anything. It turned out that she had calmed down too and we had a quiet conversation, during which it emerged that her mother had refused to go with her either and Carol had been upset and worried that I might think she was no use.
A typical example, then, of a carer transferring her feelings of anger and frustration from her mother, who was causing the problem [4] to me, who was doing my best.
This happens fairly often and staff can be very upset by being blamed for something they have not done. This is an occurrence for which they should be prepared during training and individual instances must be dealt with during supervision sessions. It's easy to say, "Don't get upset, you did your best"; it doesn't usually help with the hurt feelings - and the carer doesn't always apologise when she calms down, although mine did.
RULE ONE: Staff sometimes can understand these things better if they are told that the carer is transferring her feelings to them. If you take them through a scenario where they hurt someone's feelings because they were suffering themselves, it usually comes clearer. The best strategy is to prepare, to audit and -
RULE TWO: Try to get the carer to apologise to the person who is hurt.
They often apologise to the project leader. This is not enough. It was the fault of the dementia, because of the dementia it started; but people should not get used to abusing one another, even if provoked. We can understand and forgive if someone shows they care.
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RULES for dealing with AGGRESSION
The phrase "rules are meant to be broken" is still true. Sometimes, with experience, you can make up your own - or adapt what you have learned to a new situation. With aggressive behaviour, however (because it can be very dangerous) there are a few things which you MUST keep in mind. Your supervisor should check you remember these regularly - just in case - and s(he) should expect you to explain why you didn't use them if things go wrong!
Also - remember that the best way to dealing with crisis behaviours is to avoid them happening in the first place.
RULE ONE: KEEP CALM - clients can pick-up your agitation just as you can pick up theirs. Deal with the situation in a quiet calm way. DO NOT SHOUT at the client, even if the client is deaf(!).
RULE TWO: DO NOT TOUCH the client in any way (not even to comfort) - Any movement towards him at this juncture is likely to be interpreted as an act of aggression.
RULE THREE: IF THE CLIENT IS A MAN and a male staff member is in close proximity, he should move away and give way to a woman to deal with the client. (This takes advantage of the possibility that the male client was brought-up not to hit women and may feel some inhibition about doing so). Just a chance!
RULE FOUR: DO NOT LOOM over the client, and do not creep-up from behind.
RULE FIVE: MAKE SURE THERE IS A CLEAR SPACE AROUND THE CLIENT - and that no other clients are in danger - it is preferable if the clients can go elsewhere; another room or a garden.
RULE SIX: TRY TO GET EVERYONE SITTING DOWN - INCLUDING YOU!
I have seen clients fight sitting down - but it is a lot harder! It also, sometimes, occurs to people creating a furore that perhaps they are here to do something else i.e. having a chat...
RULE SEVEN: TALK TO THE CLIENT.
It doesn't much matter what you say as long as you say it in a calm and continuous way. It is the tone of your voice which matters! Some people have tried reciting a poem - usually a long one (Lays of Ancient Rome, some Shakespeare, The Lady of Shallott) - this has the effect of causing the client to wonder what on earth you're doing and usually stops her/him in his/her tracks. However, in an epic poem, like The Lays of Ancient Rome, do NOT do the actions or shout. That will make things worse!
RULE EIGHT: FEEL THE SITUATION.
If you are not very experienced, be careful and take your time. If you are experienced you are probably used to "feeling the room" (if you're not, perhaps you should be?) and you will be able to tell when it is safe to comfort and then distract the client. The first comfort should be a hand on the arm - in a non-threatening manner - a calm but cheerful question then, such as "How about a cuppa?". (A Scottish "fly" cuppa in the kitchen is a sign of acceptance and favouritism which has saved many a situation!). Then find something the client really likes doing - consult notes if they're not in your head. Do it with him/her for as long as possible. Take special care over that client for the rest of the session. Make sure the incident is written-up and reported to whoever it should be reported to; and?
RULE NINE: PUT IT ON THE AGENDA for a Team Meeting.
You should carry out an exercise to investigate why this happened, what triggered it and how you can prevent it happening again. Use as many colleagues as possible and get outside help if you think it will clarify matters. Always remember that there are two parts to every crisis - what happens on the spot and what happens later They are equally important.
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RULE ONE: The main point about this is that it happens. Get used to it. There is a need for a slightly thickened skin when dealing with serious verbal aggression (which is, surprisingly to some people, much more common than physical aggression).
RULE TWO: Think about words. There are some which are used regularly and some which are not - for many people. Some people, though, "swear" in the course of their usual social interactions.
RULE THREE: Consider the person with dementia. If the frontal lobe of the brain is affected, there is some disinhibition - that is, nothing is forbidden; the person does and says what (s)he wants to. Words are words; they have a value but, for the person with dementia who is disinhibited, their values are the same. A word is a word. One may as well use whatever words occur. So, it happens that the person with dementia who may have been a quiet person who never used the words we all know, can tell you to f*** off! Or call you a bastard, bitch, Satan or any other thing (s)he feels like.
There are also, of course, other people with dementia who have always used bad language, whether in general conversation or for special purposes. There seems no reason why they should stop, although some do. Sometimes a person who "had a terrible mouth" may well forget she did and you may never hear a rude word from her.
RULE FOUR: There is also something to be said about watching you own language. Behaviour (and that includes language) may be modelled and, if the person with dementia does not know what to do or say, (s)he may well model his/her behaviour on staff/family members. There's just a chance that, if you are careful what language you use to him/her, (s)he may copy you!
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There are lots of different sorts of behaviour which used to be called "wandering". This, as well as calling a person with dementia who walks, are now as outdated as is the term "challenging behaviour". It is, they are, just "behaviours" - things which people do. They are, as are many things we try to classify in this way, rarely caused by the dementia. The person with dementia has feelings much as we all do, e.g. being cold, hot, angry, in pain, frustrated etc.: it is in the way (s)he deals with it that the dementia is involved.
Some kinds of Walking are as follows, with tools where they are needed:
(a) Aimless Walking
This type of walking is very common and many people with dementia do it. They don't usually care where they go, they just find walking helps to calm them. If this is true, they are self-medicating. If it bothers you, but is doing no one else any harm, maybe it's your problem? You probably don't have a need for a special tool - but if you need a suggestion: can people who walk aimlessly possibly go outside? Lovely if it's warm and dry but a good raincoat and wellington boots can make even cold and rainy walks possible. Don't send her on her own - go with her; it will do you both good.
RULE ONE: If the walking isn't bothering the person with dementia or any others around them, is it your problem? Give yourself a good talking to!
(b) Desperately Seeking Something
This is the kind of walking where the person with dementia is searching for something (but rarely knows just what it is). Most commonly, it's the lavatory (you didn't actually think painting all the doors blue was going to work, did you?). Try other ideas but keep in mind that you may never find out. It might be Uncle Fred (see Rummaging & Squirrelling) - and he's not likely to be found.
RULE TWO: Look underneath the walking - is the person needing comfort? She may need a hug; she may need to talk about her mother. The rule is: acknowledge her disquiet first before trying to distract her. If she's actually looking for a physical object, help her find it.
(c) Driven Walking
This is the kind of walking when something needs to be done to stop it - and persuasion is the only real way. The person with dementia showing this sort of thing can usually be identified because he is walking FAST, and may even be hitting the wall at the end of the room as he passes repeatedly. You can see that he is angry and/or frustrated. Why? Having said that, he is entitled to his feelings and saying something daft like "There's nothing to be angry about" is likely to get you a slap round the side of the head!
RULE THREE: Much better to get him to tell you what is bothering him - a sit down with one person's 100% attention could help, even if he can't tell you what is wrong. When you feel he has calmed down enough, offer him a cup of tea, or a walk or his favourite biscuit. Once again "know your client" is the order of the day!
(d) The Competent Escapologist
The Competent Escapologist will get out of wherever he thinks he is being kept against his will and it doesn't matter how many heavily armed Rottweilers and barbed wire fences you have. Some people will even try to go home when they are already at home. Locked doors can be watched and the movements needed to unlock the keypad can be noticed - most people with dementia would be unable to remember the actual numbers. Another tactic is to get workmen (painting the hall or something) to let the person out as in "He looked normal so I thought he could go out!" Yes, precisely. Other people's visitors (if we're talking Care Home residents here) do it too. "She seems better than my mum, so I thought it would be all right".
RULE FOUR: OK, (s)he's gone. You should notice as soon as possible so that (s)he may be found in the garden or wherever.
RULE FIVE: The police may have to be informed
RULE SIX : Relatives definitely must be informed - because you have failed to keep their relative safe.
RULE SEVEN : You could well start by checking where the person with dementia used to live when (s)he was young. (S)he may have gone there - if you hurry, you may get there before (s)he does.
RULE EIGHT : The best advice is not to hit yourself over the head with guilt. You do your best and families are usually grateful. Keep in mind that few people with dementia are sectioned and, technically, they can leave at any time. We are not actually allowed to keep people against their will. Please, however, balance this against your responsibility for keeping them safe.
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7. Rummaging & Squirrelling
These are not usually behaviours which present a problem - although some of us definitely get irritated by rummaging. This is a variant of the Desperately Seeking Something walking behaviour - whether looking for keys, bus pass or Uncle Fred.
RULE ONE: Make arrangements to fulfil the need.
The act of rummaging seems to satisfy some deep need and the best thing you can do, either as a worker or relative, is to make arrangements for useful rummaging (and, perhaps, put all the stuff back in the drawer afterwards!). You can try to help, but it is not likely that the person with dementia will be able to tell you what (s)he is looking for.
Squirrelling is something different but not, usually, to be treated as "stealing", as many people perceive it. People with dementia sometimes see something they fancy and pocket it. This is squirrelling (saving things against a bad winter - that is, needing security). Real stealing has the intention of depriving the person who owns whatever it is of their property permanently. It would be unusual for a person with dementia to do it with that in mind (although, where do all the retired burglars go?).
RULE TWO: Best to put it back when (s)he isn't watching and talk down the person whose property it was...
If the items squirrelled were pens, notebooks or other easily replaceable things - just replace them!
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8. Unusual Sexual Behaviour
I have thought, for a long time, that there isn't enough love in the world; hence violence, cruelty, suffering. Love is often expressed as sex - and where love is too difficult for us, sex is sometimes the only thing we have left.
Working with people with dementia has taught me that the expression of sexuality is a good thing - even if it shocks some people. If someone is importuning a member of staff, setting-up a relationship with someone, or masturbating for comfort, at least (s)he is aware of some of his/her feelings and what might be done to resolve them. The rest of us should be so aware.
Masturbation: If someone is masturbating in the lounge or day room, it is much more likely to be a man than a woman (for reasons of anatomical accessibility if not for those of inhibition). It is quite likely that it is very quiet and that there are few other people present; the man may well think that he is alone.
We would suggest that, if he is alone but for you, you go out after gently giving him a towel (he will usually know what it is for because he will remember the consequences of what he's doing) - except that there are generally other people expected and they could well be embarrassed. You may need, therefore, to get him out of there to a place of privacy.
RULE ONE: First, let him know you are there.
"Jake, good morning, how are you today?". He will probably jump at this point; he may try to conceal what he's doing.
RULE TWO: DO NOT TOUCH HIM or offer to help with his zip - this could easily be misinterpreted.
Speaking may well solve the problem as far as you are concerned - but don't walk away and leave him to his guilt - it could distress him considerably and even have unpleasant repercussions. Ignore what he has been doing - and don't worry if his trousers are still open, you (or he) can fix that later.
RULE THREE : Be as comforting as you can without actually touching.
Ask him how he's feeling today [5] and chat lightly with him; tell him what's for lunch, or a story about what you and your husband did last night (avoiding the obvious which is probably now uppermost in your mind!) - then distract him. Let him know that you really want to talk to him about something else. If possible, ask his advice about something specific. [6] What are his interests? You should know.
RULE FOUR : Interest him in doing something else.
The first time I was in the position of observing something my client would have preferred me not to see, we spent the first part of the morning doing a jigsaw, on a table which disguised his lower body, - until he needed the lavatory. When he returned, everything was back in place. No probs.
RULE FIVE: If you do need to get him out of there, you could try suggesting a walk back to his room (also useful for people who are not adequately dressed for other reasons!). Do this discreetly and hope you meet few people. Let him in, say, "Jake, I'll see you later; I'll be back for you in five minutes!". Close door gently and go.
RULE SIX : DO NOT forget about him. Make sure you DO go back in five minutes and knock loudly on his door. Walk with him where he wants to go - chat with him as if he was a valued friend - he is.
Relationships: Another type of sexual expression is the one where two people with dementia (or one with one without) start a relationship. The idea that Care Homes are not sex-free zones upsets a lot of people, especially Home Managers and the families of the people concerned.
RULE ONE: The last thing anyone should do about this is the first thing that springs to mind. You should not move one of the people involved to another home unless one of the people with dementia is afraid of the other and there is coercion taking place. The situation is not that you want them to stop having a relationship (if it is, you need to consider why you are so shocked).
RULE TWO: You need to make sure no one is being exploited and that they are not upsetting other residents by exhibiting private behaviour in public.
RULE THREE: The way to do this is to have a talk with the people concerned, together and separately. If you are at all good at your job, you will be able to tell if someone is scared.
RULE FOUR : If not (in most cases), just support them in having private time and make sure that the less seriously dementing person understands that his/her girlfriend/ boyfriend may have problems sometimes. Be grateful that there is, usually, no chance of an unwanted pregnancy!
Importuning Members of Staff: The third common "unusual" sexual behaviour is no more unusual than the last one. Sometimes the person with dementia may make a pass or otherwise importune a member of staff. This often happens during personal care.
RULE ONE : It's perfectly OK to say "I don't like that Mr Dobbs!", although it isn't always a man and it won't stop him doing it. It just may make you feel better. We always say that you should try washing up as far as possible and down as far as possible and leave 'possible' alone. If you react in a shocked manner, he may well think you started it. Like the man with AD in a Care Home said to his wife, "Take me away from here, that woman is trying to seduce me!" If he is normally a nice man, he's doing it because he's disinhibited; or maybe he's just a dirty old man. Dementia doesn't make you a nice person; you may not have been before.
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9. Moods - mad, bad, sad...
Emotional lability, that is, wide swings in mood between the low and high is supposed to be a part of many dementias. Alzheimer's Disease is well-known for this but some other dementias show it too. People suffering from this type of effect may laugh when there seems nothing to laugh at, cry similarly, be grumpy for some reason others are not aware of.
If you ask them why they are feeling happy (you probably won't, too busy just being grateful) or sad, they may not be able to tell you. It may or may not have any relationship with what most of us call "reality". Please note that this is not necessarily reality for the person with dementia.
RULE ONE: We have to try to enter into their reality - to see what they are seeing as best we can. This is not easy, takes a lot of practice, and sometimes doesn't work. Keep in mind, though, that it is real to the person with dementia and must be respected.
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Footnotes:
1. See section on entrainment tapes in MusicWorks.
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2. You should KNOW!
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3. Detachment is important in Buddhism, the unfettered soul prepares for Nirvana.
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4. Without knowing it, she was just exercising her right of choice
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5. There is a chance he will tell you he is missing his wife or something like that - although this is not always the reason for masturbation by any means - if this does happen it may be a good time to get him to talk about his wedding or children. He may weep. Be sensitive.
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6. I have used someone's obsession with motor cars in this way - asking his advice on what kind of car is the best to buy - new or secondhand; Ford, British or Foreign; two or four-door..." I actually had good advice in this way.
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