For a full time carer, for example a spouse of someone living with dementia, it can be an extremely lonely road.
Recently I heard of someone who is at home, caring for a spouse, who is finding it more and more of a struggle to have any social interactions at all. I'm sure this is not unusual. But it is very sad to hear that people stop visiting because "they don't want to see their dear friend in decline".
As a person becomes more dependant and less able to socialise it can be hard for the partner to get out of the house. Sadly it can be a matter of just needing an extra pair of hands to help with the practicalities. Having friends and family willing to visit and offer support is important. But it can be hard to know what to do and how to help.
Staying in touch with the person and carer is the first and most important step. But this can be hard, feelings of inadequacy can make you want to avoid the situation completely.
We are all guilty of putting off the things in life that feel a bit hard. But in the case of visiting someone with a condition such as dementia, fear and social stigma play their part. We may find ourselves coming up with excuses for not keeping involved, the reality may be we are just scared of a situation we have no control over.
Some things we may say to ourselves:
The Carer is too busy for visitors. Are they? Did you ring and ask? Maybe the carer would love a visit. They may find getting out of the house difficult by themselves. They may enjoy the distraction of a conversation, a chance to hear about someone else's day or just a bit of gossip.
The person with dementia wouldn’t want you to see them like this or I want to remember them as they were. This again is an easy one to justify. The person themselves may have even said something in the past to indicate this. But situations change, people change. While your friend may no longer be able to crack the jokes they used to, they now may be a better listener, or appreciate your jokes more. They need to be seen for the valuable person they are now. You may see them as a completely different character than the one you used to know, but you still want to give them, and their partner, the care and consideration they deserve.
I don’t want to over tire or over stimulate the person. Your visit doesn’t have to be long. A short cuppa may be quite enough for all involved. It may be the carer really needs the visit and the person with dementia would enjoy listening, or not be involved at all - but do be conscious of not talking about the person in their presence. Ask the carer, see how it goes on the day. You may chance upon a good day where the person is very relaxed and happy for a longer visit.
The person won't recognise me anyway. Sometime the carer may be in more need of the visit than their patient. Revitalising someone in their care role is something that should not be undervalued. Also it may appear that someone doesn't recognise you at the time, your visit may still be uplifting for them and even possibly stimulate memories after you have left.
It’s going to feel uncomfortable. Again yes it may feel uncomfortable, especially if you haven’t visited for a while. The individual could be at a stage where there is a possibility they may do or say something inappropriate. Remember a carer has to live with this every day, and your visit is about supporting the carer as much, or possibly more, than the individual. Talk to the carer before your visit, have some idea of what you could talk about. Or bring along something you could do together. Mindjig has games, reading material and conversation starters that may help with this.
I’ll visit in a week or two. This unfortunately can lead to putting it off indefinitely. Especially when the guilt for not visiting earlier kicks in. Our minds work overtime to justify our decisions and for some crazy reason, not having gone last week gives us a perfectly rational excuse for not visiting again this week. But if you really can’t get there, give them a call. A short phone conversation or visit to show you care may make a huge difference to a person's day.
“They may forget what you said
- but they will never forget how you made them feel.”
Carl W. Buehner