Our last article was about “How do you know when it is time”. Underlying this whole discussion is the very difficult decision about how to care for your loved one, whether to seek professional support, and how to recognize what kind of help you need. I have not tried to sell the idea that assisted living is always necessary and ultimately inevitable. I have my own views about this, but I consider it my mission to provide you the knowledge and resources so you can make a decision that will be comfortable for you. The sooner you implement support the better off you will be. This is not a sprint this is a marathon and the odds are that you will need support of some kind. This should not be looked at as giving up any control but as keeping you healthy for this journey.
Today we are going to talk about what you should look for if and when you decide it is necessary to place your loved one in the care of an assisted living community. Use of an ALF does not have to be a fulltime commitment. This advice comes not only from my own experience – which was harrowing, unpleasant, and filled with mistakes – but from the comments I have heard from the many families I have listened to who have gone through this important and difficult process.
The first step in the process, which requires medical assessment, is to decide what level of professional care is appropriate for your loved one. From there on, you will need to make most of your own decisions, and you can do so only by conducting tours of the various communities in your area, and they do not have to be scheduled in fact that may be better, unannounced.
When you walk into an ALF for the first time, follow your nose. Sorry if that sounds indelicate, but let’s be realistic; we do this – whether we realize it or not – every time we select a hotel. Does it “smell clean?” If the ALF has unpleasant smells, beware. This is a sign that cleanliness and quality of care may be deficient.
Then look around. How does it make you feel? Is it a place you would like to visit? Is it open? Is there a sunny atmosphere with outdoor light in the common area? Do the residents seem to be comfortable and occupied? Is the care staff engaging with the residents? Are there family members present who are interacting with both residents and staff? If there are family members present, don’t hesitate to walk up, introduce yourself, and ask their opinion of the facility? They will be more than happy to share their experience. This is the best advice you will ever get, because it is from people who have been where you are today.
Then go over the nuts and bolts with the administrator. Find out about their staff training. Look at the showering areas, personal care facilities and medication rooms. Is nutritional food provided and is hydration part of their care? Do the rooms appear to be clean and safe? Are there common areas for games and social interaction? Is there a regular program of outside stimulation, such as music, pets and appropriate entertainment? Will you be given options in choosing your physician? You may ask to see their AHCA (Agency for Health Care Administration) reports, which should all be in plain view. These are the reports from state inspections, and must be available to the public. Ask the administrator if she (he) has regular contact with families and seeks their opinion in the care of their loved one. Does the ALF have a day-stay or respite program if you feel your loved one does not yet require fulltime care, but may benefit from socialization on a regular basis?
Another option is In Home-Health Care with a company that has trained personal in dealing with a person with dementia. You should be requiring them to do as much as they can with your loved one in the home or in a community. They should be engaged as much as they are capable of, socialization is what they would be lacking staying at home so do not sacrifice that for them.
Even if you may be months or years away from your loved one requiring an ALF, I recommend you start this process as soon as you have a diagnosis and know you will be coping with dementia. It’s a pretty tall learning curve, and you need all the time and resources you can get. Join the Alzheimer’s Family Organization. It is a tremendous resource. Attend support group meetings. They are free. Do your best to put behind you as soon as possible that awful feeling that you are doing this alone. You are not, and those who have gone through it before you will be your best counsel.
Finally, I would like to say: Be kind to yourself. Try not to allow yourself to feel guilty if and when friends and relatives offer different opinions of how you should care for your loved one. It’s easy for them, because they are not in your shoes. There is no single correct solution, and if you have done the research, you should stand confident in your decisions.
This is a disease where sharing is the best therapy for caregivers.
Until next time remember: “We all deserve the best”
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