macular degeneration, macular, diagnosis Fair and Impartial – My Macular Degeneration Journey/Journal

Fair and Impartial

In the interest of being fair and impartial – even though I really am not, impartial, that is – I guess I need to put in a plug for those who are helping us. You know, those caregiver types.

‘Caregiver’ for me right now means chauffeur and someone to occasionally see or read something I cannot do myself. However, there are some of us who have caregivers with a much broader range of responsibilities.

Khan et al at Queen’s University in Kingston, Ontario completed a study on burden and depression in caregivers of the low vision and blind. One of the things they found in their research review was 50% of legally blind or no light perception patients were separated or divorced within 1.6 years of the onset of visual impairment. This was not related to the length of the relationship.

In other words, if you are low vision and you want to strangle your spouse or your spouse wants to strangle you, there is precedent in the literature!

Also in their research review they found spouses of people with low vision had an increased risk of poorer physical and emotional well-being over 5 years. Perceived burden on caregivers per Khan et al was related to limitations imposed on the caregiver’s personal time. Time spent in direct care and supervision of the visually impaired was correlated with depression. The more of a time commitment, the greater the depression.

What can help? Caregivers of those who had gotten low vision services did better. It appears having all of those gadgets and knowing how to use them does have some extended benefits.

The Mayo Clinic agreed that longer hours of caregiving lead to greater stress. They made a list of things caregivers can do to make things easier on themselves. It does include getting help to spread the burden . It also suggested setting realistic goals (“It’s a bird! It’s a plane! No, it’s Super Caregiver!”) and getting connected to others in similar situations. The ideas are not highly original but they have often worked.

So it would appear if we want to stay out of divorce court – or criminal court on charges of murder! – we should finish a visual rehabilitation course so we can stay less dependent on a caregiver. If this is not possible, allow a second person to come in to help. According to Khan et al, 2.5 hours daily of direct care is the magic number. Above that the burden and depression increase in earnest.

And in related news, I rode my bike today! 6.21 miles. Not great, but it proved it can be done. An increase in my independence that will take some of the burden off people supporting me. Good deal!

Even better, I got back to some of my ‘normal’. I used to ride and stop at the convenience market for a caramel ice cream cup. Today it was as good as I remembered it. Yum.

written April 2, 2017

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