Where do I start?
My 72yo Mom was just diagnosed with dementia. She lives alone. I have no clue what I’m doing. I have an appointment with senior services to do an assessment (not even sure what they do?) and an appointment with neurologist (not until end of next month). Is there a checklist somewhere? ugh, I don’t know where to start. I just feel completely lost and overwhelmed.
Comments
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Welcome. Sorry you need to be here. There is so much to do in the beginning. One of the most important things is to see a lawyer. She should appoint a durable power of attorney, a medical poa, a living will is a good idea, a will and it might be good to ask about Medicaid planning if there is any chance that might become necessary. If a patient portal with her doctor is an option, I would set one up. Driving and living alone are two touchy topics ( when are these things no longer safe). It might be a good idea to bring these up with the neurologist. Then you have a professional’s opinion. If the neurologist says no driving or living alone it also makes them the bad guy rather than you. You will need to take over finances soon if you haven’t already. It’s probably a good idea to start thinking about her care as things progress. Will you get 24/7 in home aides ( very expensive), move her in with a family member, or assisted living ( there can be a waiting list and this is expensive also). Another important thing to do is just learn all you can about dementia. I have attended some resources.
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We don’t know a lot about your situation like if you have siblings or if you live close to your mom, etc. H1235 gave you a lot of good advice. Get the book The 36hr Day so you can begin to understand what’s ahead. Talk to your siblings now about what’s happening. Start to formulate a plan for when she can no longer be alone at any time. This disease is deceiving. Everything seems ok until it isn’t.
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welcome to the place for info and support. We understand how you feel. It’s overwhelming. You’re not lost or alone. We know what you’re going through. I’m not familiar with senior services. Is it the Agency on Aging or from her doctor? They usually ask questions about their ability to do ADLs. Like bathe, dress herself, prep meals. She could do those things and still not be able to live alone. It’s more than ADLs. My husband was being evaluated by the VA and the nurse asked him what would he do if a fire broke out. He thought a long time and then said he would try to put out the fire. She asked later was there anything else and he said no. My heart sank. He wouldn’t know to call 911 or get out of the house. She told me later that he should no longer be left alone for any length of time. It wasn’t safe. Ditto what H1235 posted above.
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There is a lot to do at first and it will feel overwhelming. Poster H1235 gave good advice and listed out exactly what you should do. Is the senior services doing the assessment from her doctor is it a state/community agency? My mother met with a neurologist, but they did not help with medications or give useful information about managing her behaviors after she was diagnosed. You will want to ask about managing her symptoms as she progresses through the disease. If they cannot do that, ask them to refer you to a geriatric psychiatrist for that so she can be closely managed. Be sure to become an authorized representative with all of her doctors so you can communicate directly with them. Hopefully your mom is agreeable to you helping her, that's half of the battle in the early stages. There is so much useful information on this site so come here often to get info and browse the discussions.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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