Sometimes it can be tough to accept – it was for me – but gradual loss of autonomy means you need help.
Naturally, your loved ones will help, and it’s rather nice. But over time, the trap closes around you and your significant other becomes an assistant nurse. Nobody benefits from that, lines are blurred enough already, so loved ones must stay at their place, that’s where they’re the most “useful”. Never forget that it’s a trial for all of you and that they probably suffer as much as us. They also need to get back in touch with their inner selves to be strong. Hence the need to turn to professional help.
The first thing to consider when choosing a professional carer is that there’s got to be a match, between you and them. It’s hard enough to undergo such an intrusion into your intimacy, so if you don’t get on too well…
You are absolutely entitled to impose certain criterias upon the organism you will go through. Let’s not be afraid of words : organize a small casting, you are the one who’s paying. Well, almost. Here we are at the crux of the issue, financing and the legal/administrative tangle that can follow.
I am only qualified to talk about the French context, but getting money out of an administration seems to be an universal issue.
The key is knowing your rights : get in touch with associations in your country, learn about laws. People who will evaluate your needs will not always be on point and can understate them, without meaning harm but rather because of a lack of training or knowledge, sometimes about their own rules.
Your medical equipment can be paid for, as well as some fitting-out works, psychological support, help for cleaning out… Do not hesitate to testify here about how the benefit system of your country works to help out others.
As for me, I have a 24/7 help that was very difficult to obtain. Yet I am on tracheostomy and ventilator, which should automatically mean a permanent assistance in France.
Do not hesitate to fight for your rights, it’s not only for you, but for your loved ones as well.