A partner with dementia

The years after my husband’s vascular dementia diagnosis were very difficult for us both. But as time has gone on I have found several things that have improved matters, both for him and for me as his partner. I would like to share some of my tips, in the hope that, although they are very much simply my personal rules for coping with my own situation, others may also find some of them useful.

My husband became happier when he was prescribed Memantine, and more able to cope with his condition. And for my part, I read books and went on courses to learn as much as possible about dementia and how I could help him.

We have now both been living with my husband’s condition since 2005. Here are my suggestions and advice for things that may also help other people living with dementia.

1. Don’t contradict when you hear them say something you know to be incorrect as this just undermines their confidence. You can always correct the information out of earshot.
2. When questions or statements are repeated over and over just reply with the same answer in the same tone of voice. This takes practice but really helps avoid stress.
3. Don’t tell them they can’t do something any more. Help them to continue doing the things that they love and still have the skills for. This may mean enlisting the help of friends or family.
4. A routine is important so that daily tasks become automatic. Again, this needs care and help for them to keep to that routine. You can deviate but with gentle persuasion.
5. Avoid anxiety and stress for them and you as much as possible. Don’t shout or get cross. Try and keep as calm as possible. This gets easier with time, and benefits both of you.
6. Laugh about things that go wrong. Laughter helps a lot. For example, my husband is always turning down the heating dial and this annoys me: especially when he swears blind that he hasn’t touched it. I now say that I know it’s not him but it’s the gremlin that lives with us in the house. We then both laugh as he knows I really mean him!
7. Build regular exercise into the daily routine. We go for a short walk by the sea, weather permitting and at first I longed to do different walks but my husband chose this walk every time we ventured out. I now take pleasure in the different aspects of that walk. The weather, the tide, the objects on the tide line, the people we meet are all different every time.
8. Familiarity is really important, so try not to move house, unless you have no choice. If you do need to, pay for help if necessary, and if you can afford it – otherwise you may find the increased burden on you too much.
9. Try to maintain a healthy diet with as much fresh food as possible (time and budget permitting). I cook quick meals or batch cook and put portions in the freezer for times when I don’t feel like cooking. Eating a healthy balanced diet is important for everyone including those with a diagnosis of dementia. This includes not eating too many refined carbohydrates, too much salt and trying to eat five portions of fruit and vegetables a day.
10. Drinks are very important as dehydration can be detrimental, increasing the likelihood of infections and affecting mood and concentration. So make sure they have regular drinks of water or tea. I find that my husband is reluctant to drink when we are out and about or on a train journey. I realise this is because he worries about having to go to the toilet in a strange place or not being able to find me. This takes careful management or making sure he has lots of drinks on arrival.
11. Many people find that dementia impacts their sleep, so it’s not always possible to maintain a good sleep pattern. If possible, though, good quality sleep for the recommended eight hours a night can be beneficial to overall health and wellbeing. Fortunately my husband sleeps well and I think that not having stress or anxiety helps with this.
12. Make sure your loved one has taken their regular medication. I can ask him, and he will say he has but when I check his medicine box the tablets are still there. I put his tablets in a box so that he has a week’s worth in named compartments.
13. Always leave a note somewhere familiar to tell your loved one where you are and how long you will be. Even if you are only popping to a neighbour or in the garden. They will not remember being told. They get used to looking in the same place.
14. Look after yourself. Have ME time. Go to a relaxation class, find time for a hobby. I do yoga, painting, knitting, WI, gardening and others. I try and involve my husband in social events where he will meet familiar people. He often needs encouragement to go but enjoys himself when there. I am lucky that we have lots of events and classes in our near vicinity.
15. If you can go away on your own for a few days then do. Organise people to pop in. Leave easy-to-eat food for your loved one. I write a timetable with information telling my husband where I am, giving important phone numbers, writing what is happening each day and a reminder in red to take tablets at the right time. I print out four copies and put one in each room that he is likely to be in. I also phone to check that he’s OK and has had food and medication.
16. Try and maintain a loving relationship. Remember they are feeling lost and vulnerable and just knowing they are loved helps.
17. Finally everybody is different and theirs and your personality will have a bearing on your journey learning to live with dementia.