Need help with confirming stages
How can I find out what stage she is in?
Do we need to go to a neurologist to confirm this?
This just started last month so we are trying to figure out all the details.
Comments
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welcome. Sorry about your Mom’s diagnosis. Most Neurologists hesitate to discuss stages. Everyone progresses differently depending on many factors one of which is the area of the brain affected. You can Google 7 stages of dementia and look for a chart that shows behaviors in each stage. She would be in the stage where any behavior is listed. Behaviors overlap stages or she might not exhibit a particular behavior until a later stage. It will give you a general idea. I found that doctors were no help. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings or Teepa Snow. If you haven’t already, immediately see an Elder Care Attorney and get a DPOA and Medical POA and HIppA forms from each healthcare provider. Don’t delay. Come here often for info and support. The caregivers on this forum helped me more than anything after my husband’s diagnosis.
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I recently did the POA medical, working on a DPOA, and HIPPA stuff. Thank you for the advice on the book. And resource!
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Welcome. I have attached a few links that may be helpful. I agree with sDianeL that doctors usually don’t give stages. This site has given me more information about dementia than any doctor. We went to a neurologist every 6 months for a while, but found it really served no purpose. You are on the right track if you have legal matters handled and are seeking to learn more about dementia.
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Although it was important that my mom's neurologist was able to give a diagnosis, they did not offer any additional support or info. We also found that her PCP had very limited knowledge and experience. If you haven't already, seek out a geriatric psychiatrist. My mom's geriatric psychiatrist has been managing her agitation, anxiety and behavioral symptoms with regular monitoring and medication.
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@alzcarer
TBH, you know the answer better than any clinician.
Most docs speak of dementia stages using a 3-stage model that is framed on potential treatments. Most caregivers use a 7-stage model (H1235's DBAT is excellent) that reflects safety and care needs at home.
Given that doctors tend to see patients during their "best" time of day and that many PWD showtime for their medical team, you have the bigger and more accurate read on this.
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I’ve found the staging tool helpful as it shows all the different kinds of behaviors so that when I see one, I know it’s most likely disease progression rather than something else. I’ve also been able to look back and realize my dad was probably already at least stage 3 when things took a turn, and I didn’t even realize it. It’s a helpful guide is how I see it.
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I've been reading all your advice and doing research, I believe my MIL is in-between stage 4 and 5. She needs help with some daily task (meds and remembering to eat, 2 important ones). Would this be the time we have more constant care and start cleaning out chemicals in the home like Alzheimer Association recommend? I know it's a vague question but really trying to figure out what is best for her.
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My mom is about this stage. She is in a nursing home. Every person with dementia is a bit different. So concerns one family may have will be different than another. The dbat give a rough age equivalence. You might use that as a guide for how much care she needs. Remember that she is aging backwards and things she could safely do a week ago are not necessarily safe for her today. It might be a little early to start clearing out all the chemicals, but still I would keep an eye on her if she prepares herself a simple lunch and watch her around the stove. I don’t know how steady she is on her feet, but she should not shower while alone in the house. Being left home alone at this stage is iffy. That’s honestly a whole other post. Even if she is fine alone now, that would be true for long. If you have any thoughts of moving her to a facility at some point keep in mind they can have a waiting list. Is there something she really wants to do but isn’t safe (pull weeds in the garden, go for a walk alone)? I would keep a close eye on her to make sure this doesn’t happen. Anosognosia can make things rough. Make sure her dirty clothes are making it to the hamper. Does she shower regularly? You should probably keep track of how often she showers and give her reminders as needed. This can end up being a big thing. I was surprised that the doctor said 1 shower a week is acceptable. There are a lot of little things you might not even think about. My mom got a new toothbrush every 6 months when I took her to the dentist for a check up. When we moved her I found she hadn’t swapped out her old toothbrush in a long long time (I really dropped the ball there). She may need help trimming her nails (hands and feet). Are you managing her finances? If not it’s time. I would limit her access to money by giving her $20 or a preloaded credit card. My mom has very poor judgement in the store (I guess anywhere). It’s best not to point out her symptoms or limitations. Do what you need to do for her without telling her or tell her you were going to do it for yourself anyway. Never because she is not capable. I will attach some more resources. If you have been reading through the posts you have probably already seen these.
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yes. The sooner the better since you don’t know how quickly she will progress. It’s no longer safe for her to live alone. She could wander or slip and fall. Ask her the question what she would do if a fire broke out in her home. If she doesn’t say call 911 and get out then she needs 24/7 care. The nurse asked my husband that question and he said he would try to put out the fire. I never left him alone after that. You should start thinking about long term 24/7 care. Will it be hiring people for in-home care or Memory Care facility?
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Thank you, I've been really considering this.
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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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