Mum often suffers high levels of anxiety and becomes very tearful and down. These strong emotional states are getting worse, and seem heightened following her change of room at the care home. I still haven’t managed to unearth the core elements that will enable me to develop a ‘Contented Dementia’ plan, described in previous posts. I long to find ways to lessen these negative moods that leave mum suicidal at times.
Anxiety and depression are common for people with dementia, but my mum seems to experience them more than most. The staff at the care home recently described her as the ‘most tragic case’ in their care. A low level of anti-depressants prescribed over a year ago did seem to help, initially. The doctor is wary of prescribing a higher dose as it could affect her balance, already a bit wobbly, which in turn could lead to a fall. I am also keen to try other approaches before resorting to more medication that makes her overly tired and ‘spacey’, as she puts it.
Witnessing mum’s low moods
Until recently, the worst of mum’s moods took place when I was not with her, and I learnt about them from the care workers at mum’s home, and the daily notes they keep. But increasingly, I witness them in person. At these times, mum doesn’t want to engage or do much at all. She feels empty and abandoned. She’s worried she’s ‘in the way’, and that she should be able to stand on her own two feet. Mum often says she doesn’t want to stay at the care home. She also shows no awareness that she has been staying there. She wants to go to her home. She’s constantly self-critical and has low self-esteem. From time to time she voices suicidal thoughts. Every so often, she is put on suicide watch, which means staff check on her every fifteen minutes when she’s alone in her room.
What it’s like to live with dementia
Even before the dementia diagnosis, mum had been getting increasingly anxious. Feeling extremely vulnerable, she now often yearns for her parents although they are long gone. An excellent three-minute film shows what it feels like to live with dementia. It highlights how the challenges of everyday living can leave you longing for the only people in your life who took care of you, and loved you unconditionally.
Interrupting the vicious cycle
Her constant anxiety can leave mum exhausted and depleted. This probably adds to her low moods and depression, where she is unwilling to do anything, and is thus left with more time to ruminate. So, there seems to be a vicious cycle going on. I have spotted it is sometimes possible to break this cycle. If she can be diverted from her anxiety for just a short while, she becomes visibly tired. Then following a nap, she occasionally perks up a bit. So, recently I have been trying to interrupt the cycle by tackling the anxiety.
Exercise and activities
As a practitioner of mindfulness, I have explored ways to get mum to be more in the moment, to lessen her anxiety. Apart from guiding mum through breathing exercises when she is particularly anxious, I have been looking into other practical ways to alleviate her stress. I have tried art and singing activities, but I rarely manage to engage her for long, possibly because she is feeling too edgy. The answer seems to be in physical exercise.
There is increasing evidence that exercise can help alleviate anxiety and has positive impacts on depression too.
A recent study shows that regular walking improves the physical well-being for people with vascular dementia, and can even ‘alter the trajectory of the disease’. Vascular dementia is the second most common type of dementia, and is the condition my mother has. Mum always liked to walk whatever the weather, and is now frequently frustrated at not being able to go out on her own. Walking is already one of our regular activities, but knowing the benefits makes me want to push the boundaries further. The great thing about walking is she can talk, telling me how she is feeling and what is worrying her, as we go. As a carer, listening attentively is one of the most important things I can do, as this helpful guide highlights. Recently we have walked the longest distances she has managed since being at the care home, and subsequently I learned she slept without the aid of sleeping pills on the nights following the walks.
Bat and ball / balloon
Last week, having listened to mum air her concerns and worries, I wanted to take her mind off things and burn up some nervous energy. I asked the activity coordinator at the home if she was aware of any physical activity that worked for mum. She gave me two over-sized lightweight bats with soft edges, and a balloon. So, with trepidation, we had a go at bat and balloon! However big the swipe you take on the balloon it floats slowly through the air giving mum plenty of time to get her bat into the right place to hit it. This activity immediately got mum concentrating, moving and coordinating her movements. It seemed to consume some of her anxious energy and enabled her to be in the moment, and not in her head, for a short while. The activity was a great success. Afterwards she was ready for a nap, and when she woke up, she was much brighter than I had seen her for days. I have tried it several times since, with different levels of success, but it is clear it is going to be one of the tools I use from here.
Chair based gymnastics
A new initiative promoting chair based exercises for elderly people has had significant benefits for people with dementia. Helpfully the programme has developed a guide (PDF) so that family members can run a session for their loved ones at home. This activity will take a bit more planning to deliver for mum, but I will try it in the coming weeks. This exercise programme is ideal for people who can no longer walk, and is safe for people who can.
Still looking for answers
I still don’t have any idea of how to help mum when she is feeling bereft, empty and helpless, as she is often, and was a couple of nights ago, after a day out with old friends of hers. A care worker joined me as I listened to mum tell me how alone she felt. Before long all three of us were in tears. My efforts to date, to support her at such times, feel wholly inadequate and unsuccessful. She is desperate to get out of the home. Kicking doors, calling for help, sometimes succeeding only to be brought back in. I will continue to explore initiatives that are reported to help lighten low moods and depression. If you have experience of what works in this situation, I would be so grateful to hear from you. Please use the comment box below to share any links or ideas.