6. A Neurologist
What's the difference between a doctor and a neurologist? Well, a medical doctor can take care of the body, and work with the neurologist. They run the physiological tests that keep your loved one in good health. It's important you form and maintain a strong bond with them, and be sure they understand the form(s) of dementia your loved one is experiencing, or demonstrating signs of.
The Neurologist should be one who understands the differences between forms of dementia. If they don't, then keep searching and ask others for referrals.
The Neurologist is able to determine the benchmarks of the disease, as well as the direction you're headed. They offer support, and are also a conduit between the patient and the doctor. Be sure both doctors are communicating!!!
7. Care Options.
Know your Care Options. In Portland, there are just under 200 care facilities, or so I've found, which claim to have Memory Care. That doesn't mean there are just under 200 real memory care facilities. Also, speak with the doctors and determine and question the ability for foster care. When Mom was first taken to St. A's, there was some talk that going through some organizations would take her out of memory care and place her in a foster care; this would have been absolutely disastrous! However, there may be those for whom this would be ideal.
With Dementia Patients, Memory Care comes in many forms. Mom suffers from anxiety which demands she has an open and the ability to move about without feeling confined. One of the first centers I'd visited would not have served her well, despite their reputation, nor that they charged much more for less.
Also, with LBD patients, there must be a limit as to the number of residents in the living facility. It's not a matter of "The More the Merrier". Mom has 12 in her cottage (her included). The other cottage mimics the number. Dementia patients need to have smaller numbers about them. They cannot deal with crowds. Mom's number is about the limit.
There is room to move about, and the caregivers are wonderful. They are able to give me up-to-the-minute reports on Mom. They also have a great sense of humor when it comes to dealing with her demands.
How do they communicate with you? Visit the home when you can at various times to get a sense of the atmosphere, and consider if this is truly where they could spend the rest of their days.
This leads to another issue:
7A. Does the Care Facility Care Up-to-a-Point? Or Do they care all the way through to End Of Life?
The less you need to move your loved one, the better. Luckily, Mom will be cared for until she passes. Other facilities will keep patients until they become physically incapable to move about without assistance; at this time, they will need to find another placement within a small window of time. Is this something you believe is in the best interest of your patient? Wow. That's a heavy one!
7B. How are Medical Visits taken care of? Is there Medical Help In-House? Do they drive the patient to the visits? How is all this managed?
7C. How Are Privacy Issues Managed? Mom refuses to have anyone near her while she showers. So, we have a plan in place that they check in on her to ensure she's bathing, but they do not venture into the bathroom, unless she's in there for a certain amount of time with no signs of movement (10 minutes). This way we're all assured she's bathing and keeping her sense of dignity and privacy. Will the facility be as flexible as this?
7D. Room to Move. Are there gardens and ways for the patients to get outdoors and move around? Between Mom's cottage and the other, patients are encouraged to go outdoors and venture into the other cottage, while the weather permits. The same staff manages both sides, so there isn't any chance of someone being "lost" on either side. Patients can also view television and movies on both sides, depending on their tastes, if this is an option.
7E. Does the facility provide Physical Therapy and Other Activities? Mom has opportunities to exercise, go to "music concerts", Bible Study, Book Groups, and Bingo, among other activities, as long as she's accompanied to the main part of the facility (the non-memory care). This encourages physical and mental activity which is crucial, rather than allowing her to just sit about and do nothing. There is great encouragement for her.
8. An Elder Law Attorney.
This, too, is crucial. The attorney should be able to answer your questions regarding Medicare/Medicaid, payments, how to work within the system, Pay-Downs (in order to receive Medicaid benefits toward residential and/or in-home care), an all that. Your attorney should also understand all the workings of the system and be able to communicate that to you in an understandable and caring manner.
9. An Ombudsman.
Any care facility or any facility that deals with the elderly will and should have this information readily available to you. This is a volunteer who works with the resources and can provide support when it is needed. For example, if there is an issue in regards to care at a specific facility, then you call on the ombudsman in order to facilitate and achieve the necessary results.
Mom was put in touch with the ombudsman for her area after she arrived at St. A's. He came in and listened to her concerns. She told him she had been kidnapped and forced into the facility for no reason whatsoever, despite all the evidence from the previous hospital that dictated she enter into a memory-care. After he left, she felt her concerns were heard, even though nothing came of it. However, they will run an investigation should those concerns merit such an action.
That number, for our ombudsman, is located just inside the entry for the cottage for any and all to see.
10. In-Home Care Resources.
This can be critical, especially if you're caring for someone in-home and need to have some respite. I know of Visiting Angels, who charge a nominal fee, and can do light housekeeping, and other jobs, while also doing activities with your loved one.
There are also Adult Day Care facilities around, as well. These can help with activities, and allow you drop off your loved one while you run away to the spa, coffee, or back home for some needed rest. With my grandmother, who had AD, this was a life saver, allowing my parents to maintain their jobs, and also run errands or have some down time.
11. Last, but not least, Support Groups for You.
If you go to the Alzheimer's web page, or the Lewy Body Dementia Association website, you will be able to locate support groups, hopefully (there wasn't one within 150 miles of my location until last Spring), in your area.
These, not only, let you know you're not alone, but also provide great resources and feedback from others in your situation. We have, too, a social worker who can run interference should the need arise, but also provides resources available, as well.
I know these feel long-winded, but I hope they provide you with some idea of some necessities required in order to help those you are involved with with Dementia.
To be forearmed is to be ready for any next steps.
I hope I didn't (although I realize I probably have) leave anything out.
What's the difference between a doctor and a neurologist? Well, a medical doctor can take care of the body, and work with the neurologist. They run the physiological tests that keep your loved one in good health. It's important you form and maintain a strong bond with them, and be sure they understand the form(s) of dementia your loved one is experiencing, or demonstrating signs of.
The Neurologist should be one who understands the differences between forms of dementia. If they don't, then keep searching and ask others for referrals.
The Neurologist is able to determine the benchmarks of the disease, as well as the direction you're headed. They offer support, and are also a conduit between the patient and the doctor. Be sure both doctors are communicating!!!
7. Care Options.
Know your Care Options. In Portland, there are just under 200 care facilities, or so I've found, which claim to have Memory Care. That doesn't mean there are just under 200 real memory care facilities. Also, speak with the doctors and determine and question the ability for foster care. When Mom was first taken to St. A's, there was some talk that going through some organizations would take her out of memory care and place her in a foster care; this would have been absolutely disastrous! However, there may be those for whom this would be ideal.
With Dementia Patients, Memory Care comes in many forms. Mom suffers from anxiety which demands she has an open and the ability to move about without feeling confined. One of the first centers I'd visited would not have served her well, despite their reputation, nor that they charged much more for less.
Also, with LBD patients, there must be a limit as to the number of residents in the living facility. It's not a matter of "The More the Merrier". Mom has 12 in her cottage (her included). The other cottage mimics the number. Dementia patients need to have smaller numbers about them. They cannot deal with crowds. Mom's number is about the limit.
There is room to move about, and the caregivers are wonderful. They are able to give me up-to-the-minute reports on Mom. They also have a great sense of humor when it comes to dealing with her demands.
How do they communicate with you? Visit the home when you can at various times to get a sense of the atmosphere, and consider if this is truly where they could spend the rest of their days.
This leads to another issue:
7A. Does the Care Facility Care Up-to-a-Point? Or Do they care all the way through to End Of Life?
The less you need to move your loved one, the better. Luckily, Mom will be cared for until she passes. Other facilities will keep patients until they become physically incapable to move about without assistance; at this time, they will need to find another placement within a small window of time. Is this something you believe is in the best interest of your patient? Wow. That's a heavy one!
7B. How are Medical Visits taken care of? Is there Medical Help In-House? Do they drive the patient to the visits? How is all this managed?
7C. How Are Privacy Issues Managed? Mom refuses to have anyone near her while she showers. So, we have a plan in place that they check in on her to ensure she's bathing, but they do not venture into the bathroom, unless she's in there for a certain amount of time with no signs of movement (10 minutes). This way we're all assured she's bathing and keeping her sense of dignity and privacy. Will the facility be as flexible as this?
7D. Room to Move. Are there gardens and ways for the patients to get outdoors and move around? Between Mom's cottage and the other, patients are encouraged to go outdoors and venture into the other cottage, while the weather permits. The same staff manages both sides, so there isn't any chance of someone being "lost" on either side. Patients can also view television and movies on both sides, depending on their tastes, if this is an option.
7E. Does the facility provide Physical Therapy and Other Activities? Mom has opportunities to exercise, go to "music concerts", Bible Study, Book Groups, and Bingo, among other activities, as long as she's accompanied to the main part of the facility (the non-memory care). This encourages physical and mental activity which is crucial, rather than allowing her to just sit about and do nothing. There is great encouragement for her.
8. An Elder Law Attorney.
This, too, is crucial. The attorney should be able to answer your questions regarding Medicare/Medicaid, payments, how to work within the system, Pay-Downs (in order to receive Medicaid benefits toward residential and/or in-home care), an all that. Your attorney should also understand all the workings of the system and be able to communicate that to you in an understandable and caring manner.
9. An Ombudsman.
Any care facility or any facility that deals with the elderly will and should have this information readily available to you. This is a volunteer who works with the resources and can provide support when it is needed. For example, if there is an issue in regards to care at a specific facility, then you call on the ombudsman in order to facilitate and achieve the necessary results.
Mom was put in touch with the ombudsman for her area after she arrived at St. A's. He came in and listened to her concerns. She told him she had been kidnapped and forced into the facility for no reason whatsoever, despite all the evidence from the previous hospital that dictated she enter into a memory-care. After he left, she felt her concerns were heard, even though nothing came of it. However, they will run an investigation should those concerns merit such an action.
That number, for our ombudsman, is located just inside the entry for the cottage for any and all to see.
10. In-Home Care Resources.
This can be critical, especially if you're caring for someone in-home and need to have some respite. I know of Visiting Angels, who charge a nominal fee, and can do light housekeeping, and other jobs, while also doing activities with your loved one.
There are also Adult Day Care facilities around, as well. These can help with activities, and allow you drop off your loved one while you run away to the spa, coffee, or back home for some needed rest. With my grandmother, who had AD, this was a life saver, allowing my parents to maintain their jobs, and also run errands or have some down time.
11. Last, but not least, Support Groups for You.
If you go to the Alzheimer's web page, or the Lewy Body Dementia Association website, you will be able to locate support groups, hopefully (there wasn't one within 150 miles of my location until last Spring), in your area.
These, not only, let you know you're not alone, but also provide great resources and feedback from others in your situation. We have, too, a social worker who can run interference should the need arise, but also provides resources available, as well.
I know these feel long-winded, but I hope they provide you with some idea of some necessities required in order to help those you are involved with with Dementia.
To be forearmed is to be ready for any next steps.
I hope I didn't (although I realize I probably have) leave anything out.
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