With the UK summertime in full swing and COVID restrictions having eased, many people are meeting up with friends and family who they haven’t seen for a long time. For most people these will be joyous, emotional reunions that are greatly anticipated, but for people whose loved one’s health has deteriorated during the past 18 months, they may also be anxious times full of questions about doing and saying the right things.
If you are due to meet up with a loved one who is living with dementia, you may fall into that group of people who are feeling apprehensive or anxious. You might be wondering what to do or say, worried about how your loved one will react to you, how advanced their dementia may have become during lockdown, and how you will all cope with reuniting.
In this blog, I want to share some tips I recently offered to a friend who is in this situation in the hope that they may help other people too.
Prior to your reunion
First and foremost, I personally feel it’s important to acknowledge worries and apprehensions. Many of us have preconceived ideas of what a person with dementia may say or do based, often, on negative stereotyping in the media. Replacing these stigmatised ideas and images is all about empowering yourself, so prior to your reunion I would suggest:
- Research dementia. One of the best ways to do this is by reading or listening to the lived experiences of people with dementia. Dementia Diaries is a good place to start. Also consider the information/support on offer from organisations like Dementia UK, Dementia Carers Count and TIDE.
- Have more regular phone or video calls with your loved one prior to reuniting to understand as much as possible about what life is like for them at the moment. Regular contact will help you to understand what a good day looks like for your loved one and what a bad day is like too. You may also be able to learn more about their routines, the things that are important to them and any challenges that they are facing. If your loved one’s dementia is quite advanced, communication may be more difficult. Be prepared for this, and try to make time to speak separately to the people closest to your loved one who are supporting them daily, IE: another family member or professional care staff.
On the day
- My No1 piece of advice to all families no matter what their circumstances is to live in the moment. No matter how apprehensive or anxious you feel, park those feelings at the door. Go with the flow of what the person with dementia wants. This may be different to how things were in the past, but you can’t change that and fighting it will make everyone uncomfortable, especially the person with dementia. Embrace how things are now and try to find special moments together – these may be as small as a smile, a shared joke, a sing-song together, a cheers with a drink or a squeeze of your hand.
- Recognition may or may not be possible. Be prepared that your loved one may or may not know who you are. They may think you’re someone else or not name you at all. This is one of the most heartbreaking feelings that family members can experience, but I would urge you not to reprimand a loved one who can’t remember, or badger them to try and remember. I go back to my advice above – the very best way to cope with this for the sake of the person with dementia is to go with the flow.
- Be tactile if this is wanted. You may find that a previously tactile person doesn’t want to be hugged, or that someone who never liked hugs and kisses now wants them. Take your lead from the person and respond to what they need.
- Listen. You might not understand everything you hear, it might be jumbled information in an order that you don’t understand or be repetitive, but again don’t reprimand the person. Try to absorb as much as possible from your loved one’s communication by really concentrating, and not starting to formulate your response before your loved one has finished communicating.
- Don’t try to take over. If you’re visiting a loved one for the first time in a long time, it’s likely you may well spot things that need doing in their home/garden or with their personal appearance, or want to suggest ways to do things differently. However, being the hurricane who blows in and wants to change things is most likely only going to create confusion and perhaps some resentment or feelings on behalf of the person with dementia that they have failed in some way. If you identify changes that are needed, it’s best to approach how these might work sensitively – and perhaps not on your first reunion unless they are urgent – and with absolute respect for how your loved one has been trying their best.
- Tread carefully with future care topics. You may feel that your loved one’s dementia has deteriorated to a point where they need additional care, or that another family member – for example the person’s spouse – isn’t coping any more, perhaps because of their own health problems, exhaustion or simply because they are ageing themselves. Again, don’t be the hurricane that blows in trying to change things. You may well be right that additional care is needed, but approach this sensitively and individually with each person involved. If you think some structure may help with future care discussions, you might want to obtain a copy of the My Future Care Handbook.
- The value of 1-1’s. If you are reuniting with a family member who is being cared for by another family member – for example your mum and dad where one parent is caring for another – try to spend time with each person individually. This will enable you to talk about things that are important to each person, and discuss topics that perhaps each person wouldn’t want to broach in-front of the other.
After your reunion
- Make a plan to remain involved. Reuniting after such a long time will be monumental for so many families. Plan to keep the conversations and your involvement alive after your reunion in whatever way works best for everyone.
Until next time…