What You Can Do

What you can do to make sure your loved one is happy

Kathleen is an 85 year old widow, living alone in the home that she and her husband bought in 1974 when their kids were still in primary school. Now Kathleen’s two daughters are in their late 50s, and because of her dementia and arthritis, they share the responsibilities for caring for her at home.

Kathleen and her daughters have known for some time she will eventually have to move, but have put it off until there was simply no choice. It is no longer safe for at-home care providers and her daughters to drop in on her occasionally. Kathleen needs full time care.

That’s the factual part of the story. But the real story is entirely about emotions. For Kathleen, the dementia means she feels confused, anxious, scared and occasionally angry as she does not see herself as being so old that she needs permanent care. In her more lucid moments, she fears leaving her home of more than 40 years, her garden, her kitchen, and the home of her memories with her late husband. And she fears being suddenly thrust into a home with a hundred or so strangers, and all of the horror stories she has heard about such homes.

For her daughters, the emotional journey is largely about guilt, sadness and some relief (but then more guilt for feeling relieved). The guilt comes as they feel somehow they could keep her at home longer, despite what medical professionals are saying. Of course they can’t, but that doesn’t stop the guilty feelings that maybe they are making this decision to shirk more care responsibilities. Sadness relates to the unavoidable truth that this move will be their mother’s last and they cannot ignore how little time they have left with her any more.

This heart-wrenching story is very typical. We could replace Kathleen with a widower and replace the daughters with daughter-in-laws or sons, or even a living partner, but the journey is the same for everyone. There is no miracle cure to aging, the conclusion is inevitable and denying it is not helpful for anyone. This is a grieving process, and it is healthy. Getting through this grieving process means Kathleen’s daughters can help her enjoy her new life. Taking the time to find the right care home and then taking the time to make her life there as comfortable as possible; that’s the best they can do.

So what can be done to make Kathleen’s new life as happy as possible? This comes down to three key areas:

  1. Moving day – minimising the stress and confusion
  2. Settling in – making sure you provide her with creature comforts that make it seem like home
  3. Ongoing care – understand what care she should be getting and how you can help (and how you can’t!)

The thought of moving or even talking about moving is usually the biggest hurdle that families like Kathleen’s must wrap their heads around. This becomes a larger hurdle than the logical decision itself.

For someone with dementia like Kathleen, at some point the decision to move is impossible to make; they will feel safer saying ‘no’ than agreeing to change. Dementia robs a person of the sense of safety that comes from understanding your environment and adapting to change. While they will say no, there is often relief when someone makes that decision for them. Typically that someone is that person’s children, albeit guided by medical opinion. And that decision and the communicating of that decision with their parent, is often said to be one of the most stressful days of their lives.

For someone that has had a fall or an illness that has put them into hospital, but they don’t have dementia, they will at least have the capacity to understand the need to move. Although this won’t change the reluctance, fear and anger surrounding the thought of moving.

Regardless of their situation, the following tips are the best we’ve heard from other families that have gone through this process, and from the professionals that support such families.

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