1) During the early stages of your diagnoses you will be able to manage at home — your friends or family will need to make some changes around the house in order to keep you safe though. Some of the changes might include removing the fuse thing from the stove (this way you won’t be able to turn it on and forget that it is on and cause a fire or something:). Or perhaps, they will put bells over the doors so, if you decide to go wandering they will hear you leave? They may take all your valuables and put them in a safe place? They may hide the toaster? There are a host of solutions available but please keep in mind, they aren’t always effective.
2) If you are married and only one of you is experiencing memory issues, the two of you could move to an assisted living community BUT the spouse without the memory issues will need to sign a document stipulating that they will be responsible for your care. For instance, if you need to go to hospital, you would need to find someone to look after your cognitively impaired spouse while you are away. Most assisted living buildings will not assume that responsibility. Why? Because assisted living communities do NOT offer that level of care. Also, people with cognitive impairment can become a burden on the building. For instance, one lady phoned the front desk 64 times in a span of two hours — she forgot that she had called and so, she kept calling and she kept forgetting:) This is why an assisted living building will require that you do have a substitute caregiver available.
3) If you are married and only one of you has been diagnosed with Alzheimers or Dementia the only way that the two of you can remain together is if you find a building that offers both Memory Care and the care option the other spouse requires. For instance, if you are healthy you may seek out an assisted living community for yourself but one that also offers memory care for your spouse.
Please keep in mind — if your health starts to decline and you need more advanced assistance — yet again, the two of you may be separated. If you are determined to stay together your best bet would be to find a “campus of care” type of community. These buildings offer all levels of care in a campus type setting, same applies if you are going the subsidized route.
***Please note*** For low income seniors — The Health Authority will provide the spouse that needs the care with options but ultimately, they are mandated to provide you with the “first available” option. In other words, you may not get to choose which community you move to.
4) Memory Care communities are generally housed in a residential care building — in different areas of the building mostly, but both types of communities do require 24 hour nursing care and it’s far less expensive for the providers to offer both options at the same place.
5) Memory Care (in a nutshell) equals lock down. Yes, I know this is a scary way of describing it but it is the most accurate.
People with alzheimers can, and often do, wander. So, lock down is necessary. Keep in mind — generally, the area of lock down is quite pleasant but in order for you to leave the building you would need to enter codes into the doors and/or be escorted out. It’s a safety measure — that’s all. A lot of times if you hear on the news that a senior has left a building and gotten lost — well, the likelihood is that this senior is wandering and can’t remember how to get home; hence the need for lock down…
6) From a memory care community, if your symptoms advance, you would either go to a residential care or a palliative care community; assisted living would no longer be available to you.
7) Here’s where it all gets a bit dicey…many people who are experiencing memory decline symptoms either ignore it and hope it goes away and / or they don’t mention it because it’s too scary or it feels too embarrassing to mention…. The problem with this however, is that memory care communities have pretty long wait lists. If you don’t mention anything and you continue to try and hide your advancing symptoms well, you will have to wait that much longer for placement. In the meantime, your family and friends will have to figure out how to manage your care.
8) Lastly, please remember, sometimes when we are trying to figure all this out it can become overwhelming so, we take our frustrations out on the people in our line of fire; doctors, nurses, care providers, housekeepers. The problem with this is these people can’t change the system….they can only work within the system.
If you want or need change, call your local MLA. These are the people that are tasked with helping us create better systems and if you haven’t reached out to them…well, they won’t know that something needs fixing.