Where to start?
Hello- new to this virtual support group and relieved since it looks like caregiver support options are limited where we live (central Kentucky).
My main questions is how do caregivers orient where they (and the LO) are in this journey? And when to gage on the next step.
Our story: I'm 38 and sandwiched between my 9 & 4 year old kids and my 78 yr mom. After pushing my concerns for 1-2 years, we finally got a diagnosis of mild, late set Alzheimer's. I'm still trying to identify symptoms, but it's mostly been repeated conversations (often sidetracking what we were talking about) and often recalling events differently than they actually turned out. A nurse that did weekly check ins this summer called it a "dangerous stage" because initially, she seems fine until you start talking for more than 5-10 minutes. She's currently living on her own and while I've told her not to drive (after an accident "the car caused"), I suspect she's sneaking off occasionally to the pharmacy, general store, etc.
I'm married but an only child and have ZERO knowledge about caregiving, insurance, MC, etc. I've tried to dig into resources I have found but I feel like I'm always left without much guidance. On one hand, her neurologist proposed some treatment options but I also can't get an answer on her POA paperwork.
When/how do I navigate her living situation? When/how do I navigate her driving, medical arrangements, insurance coverage options, etc? And is there an approach to get her more on board? She believes she's "fine" driving, living alone, etc. She believes "the doctors are amazed at how well" she's doing. When I've brought up her diagnosis she either has no response, says she's fine, or "we'll just do the best we can."… even if that means arguing "she's fine" later on. I know I shouldn't argue her reality but it's causing me to doubt my intuition. When do I need to act on these things?
Comments
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It's aa learning experience. The worse thing is inconsistency.. Sometimes, there is little hassle changing my wife's clothes. Other times, it's a real hassle.
One thing I'm still learning is that logic is gone from my wife. You can't do something like "if you let me change your clothes then we can have breakfast.
Number 1 thing: Patience. That's the hardest I have had to learn..
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Welcome to the forum.
if you can find the groups tab on the forum, you will see a new member group that contains a list of resources and items to think about.
Your mom is probably still ok to sign a new POA- you can have an attorney do it because they will determine if she understands what she is signing before she signs it.
About the car… it’s needs to be disabled or moved where she can’t access it3 -
Welcome. We’ll support you through this hard journey.
Your description of your mom is a familiar story to many of us. Search for the term “anosognosia”; basically it is a common symptom of dementia in which the person cannot recognize her own limitations.
Many people on this site have shared the following helpful article:
Getting the DPOA in place is a high priority, and the car is a major danger.
So sorry you are in this situation, but I am glad you found us.
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Check with your local Council on Aging for local sources of support. They provide advice for free and can put you in touch with local support groups, as well as fee-based services, such as attorneys, accountants, medical and home-health care.
See ncoa.ncoa.org for more information.
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Welcome. There is so much to learn in the beginning! I will add some resources. Most with dementia have anosognosia. This mean they are not able to recognize their own symptoms or limitations. I honestly think this is by far the worst symptom in the middle stages. There is no amount of reasoning that will get them to understand. Which brings me to the number one rule. Never try to reason with a person with dementia it will only lead to an argument and you will alway lose. So what do you do? Do things without her input (behind her back), if it doesn’t matter just agree with her, divert her attention/change the subject. If these don’t work and it something that will anger or upset her then tell a fib. It’s called a therapeutic fib. It’s so hard to know which is the best and it takes time to get used to this different way of thinking. I agree that this early stage is difficult. The pwd is often so confident in their abilities (anosognosia) that you don’t even think to question some things. My mom did her own laundry til I noticed that she had actually run the washer twice without putting clothes in the washer. I took mom to the dentist every 6 months and she got a new toothbrush. When we moved her out of assisted living she had 4 or 5 new toothbrushes (gross). I had just assumed she was swapping out her toothbrush each time. These things are pretty minor, but things like driving, using the stove, taking medicine and managing finances can have much more dire consequences. She will NEVER tell you she shouldn’t be driving or shouldn’t be living alone! You need to make these decisions. I would recommend seeing a lawyer as soon as possible. If you think she may protest, you might just suggest that it is something she should do simply because she is getting older. As far as the driving, she probably shouldn’t be. Her insurance company may not even cover her if there has been a dementia diagnosis. Convincing her to stop driving probably won’t work (anosognosia). Some have found some success in disabling the car or removing it and tell her it’s being repaired. As far as her ability to live alone, you might need to spend the day/night with her to get a true picture. My mom was very angry and didn’t want to go to Al. We didn’t give her a choice, just told her this is what is happening. Medication for anxiety is commonly needed to help. If you don’t have a plan now is the time. You should know there can be a waiting list for a facility. I have learned so much on this site, it’s a great resource.
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welcome to the best place for info and support. So sorry about your Mom. As others posted, your priorities are: 1) DPOA, Medical POA and HIPPA forms so you can speak to her doctors. 2) immediately stop her driving whatever you have to do. 3) get a plan for her long term care. Medicare does not cover it. An attorney could help you understand options in your state like Medicaid. Learn all you can about the disease so you can help her. Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Search online for dementia caregiving videos by Tam Cummings or Teepa Snow. We understand how you feel.
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There is a youtube channel called dementia careblazers. Look for one of its posts titled "How to convince someone with dementia they need help". It will at least give you some helpful hints.
The alzheimers assoc website, alz.org has a lot of good general info. You have 15 Area Agencies on Aging in Kentucky, Google which one is yours. You might have local Senior Centers, these can usually point you to help with insurance, taxes, etc. I second the 36 hour day and Understanding the dementia experience, and the other recommendations. Be careful about the car though, you want to have POA before doing something like disappearing a car. The group on this site that Quilting Brings Calm is referring to is called New Caregiver Help. It does have a few more resources than those already given, but remember not to post on it for questions, they will not get answered there.
Insurance- I think someone already informed you that neither original stand alone Medicare or Medicare with a supplemental plan , or Medicare Advantage plans cover long term care, i.e. assisted living, memory care, or nursing homes with the exception of short term rehab. Long term care insurance is separate and cannot be purchased after a diagnosis of dementia. What does cover some long term care is Medicaid. Please do not and make sure your mom does not make any major financial moves such as gifts or joint accounts until you understand Medicaid.
In general, right now you need to be backstopping your mom on everything you can, from making sure you have access to her doctors, she is taking pills correctly, property taxes, federal tax, insurance, all important bills are getting paid.
I do not think any of the medical treatments available to your mom are that time sensitive.
It is a huge learning curve I know, but you just need to make a start.
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I started caring for my relative about 16 months ago. There is no real book to read or manual. Pack your patience with your loved one. When not safe you need to make arrangements to move them. I'd recommend moving them before they can't determine they need to go. Assisted living programs are expensive, don't be shocked.0
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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