You imagine you have 2 adult children...

People sometimes tell me that they cannot imagine what it is like caring for two adult children with profound disabilities at home. I suggest they close their eyes for a moment and imagine they have two adult disabled children behind a door leading from their lounge. 

It is maybe difficult to imagine, but trying can help someone understand in a small way that it is a significant undertaking that requires immense dedication, patience, and resources.

Here's a breakdown of what it might entail:

Constant Supervision: both children need round-the-clock supervision due to their disabilities. Preventing accidents, assisting with mobility, always ensuring their safety. Bathing, dressing, and toileting as they cannot do it for themselves.

Administering medications, feeding them, bowel movement management, ordering nappies and medication. Physio when they become chesty, patting on back to get phlegm out.

Finding effective ways to communicate and understand their needs and emotions is a constant challenge as they cannot tell where they hurt, they cannot speak. You must learn to read their nonverbal communication in order to manage their needs as best you can.

As they grow older, you grow older and less strong and therefore the priority in caring becomes their comfort, as best as possible, to their individual interests, needs and abilities to help improve their quality of life.

Prepare for social isolation as a family as it is difficult for relatives and even long-term friends to deal with your reality.

Financial Strain will creep up on you. You have to learn to manage your financial resources with utmost care. No holidays, frugal is unfortunately your mantra when it comes to your own needs. Costs associated with specialised care is substantial.

Respite Care is something to plan for if possible. In our case we do take breaks from time to time alone as and when we can. Not too often though as it cost money.

We do our best in planning for the longer-term care of Anke and Markus. It unfortunately never feels that we are doing enough. Your caring takes up a lot of your waking day. 

Future Planning: Considering long-term care options and making legal and financial arrangements for their future well-being is essential.

Caring for two profoundly disabled children can be emotionally and physically draining. You experience ongoing grief over the loss of the life your children will never have, the life you envisioned for your children is long gone.

The ideal is to build a strong support network, seeking counselling, and practicing self-care but in reality, stays something to hope for as it stays a lonely journey.

The best one can do is to make the best of the journey, by the grace of God. .