The carer usually starts with “Why me?” “Why her?” I used to gag with frustration and anger when I finally came to terms with the compass pointing inextricably towards incontinence, drooling, loss of identity, delirium, sleepless nights. But there was much more.
I guess you can never be prepared for what dementia can do to someone you love. It rips you, the carer, and your loved one’s world apart. It’s like riding a horse without stirrups. The sheer emotional stress, in my experience, outstrips the enormous toll exacted on the carer physically. Which is why carers need to periodically take stock of an ever changing situation, adjust mentally and emotionally, and try to maintain a hold on daily life and keep the feet in the stirrups. This is much more difficult than it sounds. You’re not up against a lief threatening disease which runs its course more or less in a straight line – diagnosis, treatment, comorbidity, cure or death. Dementia, in all its forms, invades the sufferer with a mist of unknowing. At first, your loved one will begin to have memory lapses which increase to gaping holes of incomprehension about her own identity and of those around her, there may be bouts of aggression, peculiar changes in behaviour, and of course the relentless decline of all cognitive and physical faculties.
There are many good web sites around which address the needs of a 24/7 home carer, some of which I’ve recommended below. First, left me give you some suggestions which, although covered by official dementia websites, have helped me:
- Don’t ever believe that you can cope with 3, 5 or 10 years of facing dementia full on. It just won’t happen. When my mother was first diagnosed, I knew next to nothing about the disease. I believed I would care for mother alone, come what may…and survive. Wrong! I guess I started feeling burnt out during the second year after diagnosis. Neither mother nor I had slept one full night for about 18 months. She was delirious every night. I wasn’t just frazzled, I was emotionally and physically spent. I then hired what was to be the first of eight women with experience of looking after elderly people. I found myself having to replace each person because mother’s behaviour became increasingly difficult. In year three, I had someone living at home to help with the nights.
- Other siblings, husband, wife, friends. Without the love and support of my husband who constantly picks up the broken pieces of my existence and puts them back together, I’d be in care. You need someone to be there for you. Make sure you have someone you can talk to frankly about what you’re going through. It should be someone who understands you, is patient, and not a little selfless.
- Faith. If you believe in God, now would be a good time to both talk and listen to Him, and do it before the burden of dementia becomes overwhelming. I’ve taken “refuge” in my “other” family – my Franciscan parish, parishioners and friars. A well chosen confessor or spiritual director (if you’re a Catholic) will open your cage and let your spirit fly to the only One who can truly carry you through this. Pray, meditate, ensure you have time alone with God on a regular basis.
- Like us mortals, they come in all shapes and sizes. And they each have a view on how to treat dementia. When mother was first diagnosed, I needed to know everything about vascular dementia. If I wasn’t up to scratch on symptoms, outcomes, stages of deterioration, warning signs, medication, then I couldn’t help mother. I’d effectively be a bystander. Ensure that your doctor(s), palliative teams, clinicians and anyone treating or attending your loved one understands that you are your loved one’s proxy.
- Treatment. Medical practitioners outlook on dementia sufferers varies. We’ve been incredibly fortunate (we live in Spain, we’re Spanish), our gerontologist, psycho-gerontologist, palliative team and GP are all devoted to the well being and care of the elderly. However, when invasive treatment (feeding tube) was recommended earlier this year, 2014, I had to refuse three times, much to the consternation of the duty doctor in A&E. Read up about the sort of decisions you may have to make, especially in terms of resuscitation, feeding tubes, and depressive or sedative medicines.
space for you
- Ensure you sleep at night. If you’re sleeping between 3-5 hours a night, ask family, friends, your church of faith family to share a night roster at least four nights a week. Or hire an experienced clinician or carer. Some Catholic religious orders (nuns) provide lone carers with this service.
- You should plan to be away (out of the house) from your loved one regularly; ideally each day. This can be for a matter of hours or even full days. I can’t stress the importance of this. You need to physically separate yourself from the nearness of dementia, if only to regain a connection to the outside world. We’re pack animals. We aren’t supposed to live our lives cut off from eachother. Our humanity and our sensibility wane if we can’t communicate and share our experiences and emotions to others.