The DU Lounge

But of course, you feel guilty.

Two suggestions learned from my mother's long battle with dementia:

First, consult the experts, educate yourself, learn everything you can about the condition, caring for the condition, maximizing quality of life, etc., BUT (and this is IMPORTANT) don't try to do it all. What's going to work for you and your husband will not necessarily be precisely the same as what works for some, many, or even most others struggling with demetias and their caregivers.

The knowledge WILL help you recognize patterns, and give you options about how to address them. It will also help you negotiate with care facility staff, who are inevitably overworked and dependent on 'standard' protocols and treatment regimens. If you notice doing some particular thing makes a difference, you may be able to make it part of your husband's care protocol, even if it's not part of the regular regiment. But you'll have to negotiate. So - learn. And then use what you learn to make your OWN body of knowledge about the situation you and your husband are dealing with.

Second - as far as possible, be part of a consistent routine for him. Consistent routines provide structure and anchor points for people struggling with dementia. Even if they don't recognize what precise time things happen at, they may notice on an unconscious level there is a SEQUENCE - that is, you visit at a certain time of day, and you always take them for a walk in a particular walk pattern, etc.

That doesn't mean there can't be occasional differences, but as far as possible, be part of the structure of his life. Bring a mobile tablent and play favorite music, bring a book of poems and read aloud, whatever he (and you) respond positively to.

Also, take it as it comes. One day at a time. As far as possible, leave your anxieties, griefs, and expectations outside the facility, and just be present and accepting of what's happening each day.

And finally, if there is a caregivers' support group available, that can be a lifeline. It's so hard to deal with, and so difficult to explain to those not intimately connected with this process, the varying and contradictory feelings and experiences of your life - other caregivers GET IT. It's a special kind of help.

You and your husband will be in my heart. Stay strong, you are NOT alone. This community is here for you.

warmly,
Bright