Having the responsibility of care for a family member with any form of disability can be a huge burden. While definitely not easy by any stretch of the imagination when the family member is young, it can be infinitely more difficult once they grow into adulthood. Many in fact find that it’s too much, and seek other viable alternatives to having the family member in question stay with them in their own home.
I’ve recently found myself in such a position. My daughter, who has Down’s Syndrome, has now reached the age of 20. While her condition has always taken its toll on our family at times, now that she’s entered adulthood, the last few years have become increasingly difficult for all of us. It’s now reached a point where we need to seek outside assistance. Not just for my daughter’s sake, but also for our own. The last few years have been really tough on all of us.
The good news is that there are many options out there. While we’re still not sure on which route to take, residential care is definitely the main consideration, and the route that we’re most likely to go down.
The following is intended for anyone in our current position. It’s a short summary of the main things that you need to know if you’re considering it. The information comes from our own research from over the last couple of months.
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Different Levels of Care
There are different levels of care on offer. While this may seem obvious to some people, others are still under the impression that unless the learning disability of your family member is severe, no care is available. This couldn’t be further from the truth. Here’s a quick summary of the levels of care on offer:
Residential care homes: These will have carers either on site or on call 24/7. There won’t, however, be nurses on site. These are best for family members with less severe disabilities, but who still need basic levels of care such as assistance with cooking and cleaning. These also provide a wide range of activities and days out, to keep your family members entertained.
Care homes with nursing: These offer the most intensive levels of care. Along with 24/7 access to carers, these homes also offer nurses either on-site or on-call. These are best for family members with a learning disability that can also make them physically unwell.
Do the necessary groundwork. There are more than likely an abundance of care homes in your local area. A simple Google search will more than likely reveal as much. The problem is, while some homes offer an excellent level of care, and are well worth the money, there are some bad apples that should be avoided at all cost. Take the following steps to sort the good from the bad:
- Request to see ‘A service user’s guide’. Every home should be able to provide one. While no home can be expected to note down their bad points in these guides, they can prove a useful method of assessing the suitability of the day to day activities and the level of care on offer.
- Inspect the contract closely. Things that may seem trivial at the time could have a huge impact on the amount you and your family will have to pay. Some homes charge extra for things which others include in the initial fee.
- If in the UK, be sure to request a copy from the recent Care Quality Commission inspection. This can give a real insight into how things really are. If you aren’t UK based, there will be something similar on offer. Just ask in any local care home, or contact your local council.
- Turn up un-invited. If you schedule an appointment, they’re more than likely to prepare for your visit by putting an unusual level of effort in for that particular day. Sadly, this level of effort won’t be the norm. By turning up unannounced, you’ll be able to see how things run day to day, ‘warts and all’. Look out for the following things to distinguish a good home from a truly excellent home:
- A warm welcome
- Personal touches in the rooms. They shouldn’t see your family member as just a number.
- A clean, but not ‘sterile’ environment. It should feel like home, not a hospital.
- Have a look round at how other residents are being treated. If they generally look satisfied and comfortable, that’s a good sign. Pay special attention to how the carers handle residents if you don’t think they’re aware that you’re watching.
- What level of independence are the residents allowed by the carers? Not allowing a resident to feed themselves because it takes more time is a very bad sign indeed. Residents should still be able to retain a certain level of independence.
- Do the carers act professionally, while still being able to build a rapport with residents?
- What is the atmosphere like? Is this a place you’d like to be situated if you were in a similar position? If it’s not good enough for you, it shouldn’t be good enough for your family member, in my personal opinion.
- When (or if) you’re being given a tour by a member of staff, how attentive are they? Do they ask relevant questions to assess the needs of your family member? A mark of a truly great home is if they not only focus on the resident, but also on you and the rest of your family. Do they ask about you, and how you feel about this major transition? If they start asking these sorts of questions, you may be onto a winner.
- What sort of activities are on offer? Is there a wide range available? Is there ample opportunity to stay in-touch with the outside community? All of these things are very important to consider. It wouldn’t be fair leaving a family member in a place where they’re miserable.
Believe it or not there’s actually more to it than this. But these are the absolute must-do’s when taking a home into consideration. I hope this will be of help to you and save you some time on the research required for such a thing.
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