Laura Bramly
Elder Care Read

I was reading a post by Phil Bosta (thanks for providing so much material Phil!) about how his father made sure he was present at his own funeral by making an audio tape greeting 20 years before he actually died. I admire that kind of proactiveness.

While your parents may not be prepared to make a tape of themselves to be viewed at their funerals, there are many things your parents can be doing now that will just make things collectively easier on your family should one or both of them die or develop Alzheimer’s and/or require long term care. I’ll talk about some of these discussions and decisions in future posts, but right now I’d like to focus on long term care arrangements.

I am no expert; I simply have been through this with my parents, who, staunchly British as they are, refused to talk or think about preparations should they need long term care, until it was almost too late. As a result, my stepfather had to scramble to find a long term care facility that would take my partially paralysed mother, who was showing signs of advanced dementia, before the hospital rehab kicked her out. Based on these experiences, and some reading I have done, my recommendation is start talking about long term care arrangements NOW, when they don’t need it. .

First a few questions:

• What are their priorities in terms of care?
• Stay independent in their own homes no matter what?
• If so, do they have the space and the budget for a care provider to come into their home (or possibly live in their home) should they require one?
• Would they prefer to live with you in your home, and are you even prepared to discuss that option?
• Is their priority to “not be a burden on the children” and would they prefer their independence while having the security of medical assistance at close hand if needed? Then assisted living might be the way to go.

Assisted living homes provide independent apartments or rooms for people. They can come and go as they please. They may be able to prepare some meals in their apartment, but also have the option of communal dining on a daily basis. Assisted living facilities are typically not set up to take care of people with extreme medical conditions or dementia, but a nurse is on site if needed. In many complexes, a memory care unit for people who have Alzheimer’s disease or dementia is also either in the building or on the campus, allowing couples to remain within close reach of each other.

Many desireable assisted living and long term care facilities have waiting lists. My stepfather has been on one for at least five years. Talk about what they would like out of an assisted living facility.

What is important to them? Assisted living facilities range from small buildings that look and feel like a traditional nursing home, to large apartment buildings with underground complexes that house a bank, a drug store, a restaurant and an amphitheatre, creating the feel of a small town without having to go off campus.

• Many are also faith-based communities, or meet the needs of a specific cultural group.
• Think also about what they would like their apartment to look like.
• Would they like a small kitchen to prepare their own breakfast?
• How much space do they need? Do they need it partially furnished?
• Socially, is there a place where some of their friends have gone or are considering going?
• Do they want a place close to shops or a mall?
• Should it be close to one of their children’s homes and/or, if that requires a move to another town, would they rather stay in their own community?

If your parent(s) opt to stay in their home for as long as possible, discuss in advance under what terms they would move to a traditional nursing home (when there are medical issues too severe for an assisted living situation). This is almost like a living will. If one of your parents develops Alzheimer’s disease, and the other spouse must make the difficult decision that they can no longer care for them, it is helpful to be able to refer back to a document where the spouse with Alzheimer’s, when in a frame of mind to think about such things, made the decision for their husband/wife and the rest of the family that they should go to a long term care facility should such and such situation arise. It doesn’t completely eliminate the enivitable guilt, but it helps to add clarity to the situation and to guide the discussion.

Which reminds me… take notes. Designate a family member to take and maintain notes, even if these discussions are taking place via a family conference call on the telephone. If the going gets tough, you will need to refer back to decisions that were made previously, with clarity and reason.

It is also important that your family does not make the decisions for them, and then, more or less, tell them what you want them to do. Honour their many years of making decisions for themselves and the family, and make sure that you and your siblings do not have too many side discussions without them present.

These are difficult conversations to have, because your parents know that they are envisioning the last place they will ever live. There’s only one way out of their last home, and it’s hard to talk about it! However, by discussing it openly now, they will help to ensure that their last home will be the best it can be.