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My mom just turned 93 last month. She has lived with me almost 4 years. For a while she had been showing hints of memory loss but in the past 6 months or so I think she seems to be getting worse.
A few examples:I am convinced she thinks more than just her and I live here. She once said while looking into the garage, “I don’t know how you all manage with just one car”. Only she I live here. Once she thought my son’s girlfriend was my son. One evening, talking to my son, Jordan she did not know who his mother was but she kept asking about Mary (me Jordan’s mom). The kicker? There are days she is totally fine mentally.
She has lost interest in everything and just sits in her chair and stairs out the window in front of her. She has constant knee pain causing mobility issues. I am afraid if she doesn’t keep moving, she will lose what little mobility she has left.
This is all new to me. My dad passed from C-Diff several years ago so I am all my mother has left. Resentment creeps in at times because my life has become hers for the past 3 years. I keep reminding myself I am doing what needs to be done. I want to keep her at home as long as I can. For the first couple of years, I’ve always just called her “roomie” lol but now I feel I am actually progressing from roommate to caregiver.
Is there any way to know what to expect from here? Is she only gonna get worse? I assume she is. Guess I don’t really have a question in particular other than if anyone has some good tips, I would love to read them!
This site has been a godsend with much good advice!

Marysmomma93: You can garner knowledge on the disease by reading the book, 'The 36 Hour Day.'
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Reply to Llamalover47
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You hire help for her because you will burn out doing it all - even though of course you can do it all!! I opted to get an aide to be with my MIL when she wakes to get her up, dressed and fed. We do this three days a week. It costs about $30/hour and they usually require a 4 hr. Shift. She has an insurance policy from long ago that pays for this. I leave and go to a coffee shop where I write, talk to her drs., schedule my own dr. Appts, see my own dr., read or meet friends, schedule her home medical workers, OT, PT, make lists for weekly dinners that are easy (found on line) and exercise at the gym, and sometimes shopfor groceries, etc. Then when I am home with her she is often asleep or seeing OT or PT or watching tv. And I can nap when she naps, read, do my brain puzzles, do sewing projects, cook and clean the house. Things I do to keep my own sanity. Your home health aide can change your mom’s sheets do her laundry, vacuum her room, organize her stuff….make her lunch and store in fridge, read to her, play games with her, take her for walks, etc. If you do not choose to be a caregiver then call an agency like “A Place for MOM” who give you all information for free. They get paid in other ways. You can also talk to your County Area on Agency…they have a tremendous amount of information. Don’t ask your mom, just do it. You have to act like your mom cannot think straight because she cannot make good decisions, or manage her own care. If she could you could just leave. See it for what it is. She will get worse..sometimes slowly, sometimes quickly. Your OT or home medical Dr can get you medicare supports as soon as time comes for hospital bed, lifts, etc. You need these when she can no longer sit up in bed, lift her self…NOT when you cannot do it for her. Keep reading this newsletter and you will find out what the journey looks like. Get home health now..medicare pays for it - before you have to transport her to dr. If she cannot do something, get help…do not just do what she cannot. If she cannot then you find help or you will be worn out. Just because your choose to be the caregiver does not mean you have to do it all. If you cannot take care of her or feel it is not something you can do and stay healthy then she requires help from other sources. If you feel you cannot be with her to manage these things then look at facilities for her. Be smart. Stay a step ahead and know your options. See an elder attorney to make sure all paperwork is in order. That is very important. Keep that paper work in a special file or notebook for her. Keep sections on medications, insurance and all numbers, copies of her cards, allergies, medical history, etc. When somebody asks, pull out the folder. Make them a copy of what they need. You make choices on what you have the personality, patience, and health to do. Period!!! You are not the answer to all her needs and maybe not to any. You will know.
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Reply to RetiredBrain
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I agree with Brandee about movement. Medicare will cover in-home physical therapy as well as occupational therapy. The in-home PT really helped my husband, the OT not so much.
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Reply to IrisLover
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My grandmother used to refer to me as her son if I was wearing pants and as her daughter if was wearing a skirt. I loved that. I have no tips. I found many of grandmother's statements charming and poetic like "today is Yellow." Don't try to correct dementia-related statements that you do not view as "reality." Enjoy the poetry.
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Reply to RedVanAnnie
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At 93 a dementia diagnosis would not be "early onset" she may be in an early stage but that is not early onset. (Early onset would be someone in their 30's, 40's or 50's getting a diagnosis of dementia)
A diagnosis and testing is not demeaning it is needed for an accurate diagnosis.
Hiring help is important for you as well as mom. She needs to get used to others helping and you need to realize you can not do this yourself 24/7/365.
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Reply to Grandma1954
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If you are your Mom's PoA (springing) and activating the authority requires a formal diagnosis, then you need to get this done or you won't be able to manage her affairs, especially her finances -- since those insitutions have some very stringent guidelines and ethics they must follow.

If you accompany her to an appointment with the express purpose of diagnosising her, you can put a note in her medical portal to her primary and request the testing, and also request that the results not be overtly discussed in front of her. She may not comprehend it or even remember it, but if it makes *you* feel better...

There are other health issues which have symptoms that mimic dementia (like a UTI, thyroid condition, vitamin deficiency, dehydration) and they are all treatable. This is the other reason for testing: because dementia is diagnosed by also discounting all other causes.

The third reason is because if she ever gets to the point where she is depressed, anxious, agitated or violent, her primary will not be able to prescribe meds without her coming in for a physical, anyway. Been there, done that.

If your Mom hasn't assigned a PoA, then you should consider downloading those documents and having them on hand for her to sign and notarize when she's have a good day. If she doesn't assign someone she runs the risk of becoming the ward of a court-assigned 3rd party legal guardian. You don't get to run her affairs just because you're her daughter. That's not how the law works.

I wish you success in getting her ducks in a row!
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Reply to Geaton777
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Marysmomma93, it is possible to get a diagnosis of dementia without your mother hearing that word. Speak to the PCP about it in advance. I hope her PCP is a geriatric care specialist because they see a lot of dementia and know how to discuss it with the family and the patient. If you don't have her medical POA, get it soon. The doctor's office can help you set that up. Then you can access her diagnosis and other medical info through the patient portal.

With my DH, the doctor faced him squarely while they were sitting, looking him directly in the face. Doctor said something like, "I know these memory issues you're having are concerning. We have medicines you can try to see if they help. You've done a great job of taking care of your health, and your body is almost perfect. Unfortunately, we can't always fix the brain. That's sad, isn't it?" DH nodded. Doctor went on to say other encouraging things and DH said he was eager to start Aricept. So we did.

In the after-visit notes, doctor wrote simply, "Dementia." But DH never accessed his patient portal, and he never heard that word, though he knew exactly what was going on.
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Reply to Fawnby
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Dementia is not a reason for Hospice unless in the dying process. Usually, there is another health problem involved too.

You Mom is not in the early stages if she does not remember who people are. She needs testing to determine what type she has so the proper meds can be given her when she needs them.
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Reply to JoAnn29
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1. Movement is key. I'd talk to PCP and see if you can get a Physical Therapist out to the house for one site visit to recommend one of those knee braces. Some are neoprene and some are more involved. I live in Florida and see a lot of seniors in one knee brace.

2. If you can afford it I'd schedule a caregiver once a week for 3 or 4 hours a week (same day, same time). In Mom's town some of the agencies had a 3 hour minimum, some 4 hour minimum. The agencies will want same day, same times so they can staff. It is easier for them to staff approx 8:00 am - 2:00 pm as they have a lot of working Mom's. You get out during the 3-4 hour break.

3. Hydration is important. We pushed water in the morning.

4. Low to no sugar will help the brain.

5. We found a hearty breakfast every morning helped as Mom lost interest eating around dinner time. She would still eat at dinner but not as much.
Mom's breakfast for years was eggs (good for the brain), sausage or bacon, a bowl of fresh fruit, and a slice of gluten free toast with butter and a tiny spread of jam. (Mom is celiac.)

6. Sleep is important for the brain.

7. Make sure that Mom is not on any prescription meds that are contraindicated for brain health. You can talk to pharmacist and Mom's PCP about this.

8. Keep Mom off of any anticholinergic OTC supplements or anticholinergic prescription meds. They speed up brain decline. You can find lists on line and Mom's PCP was good about prescribing non anticholinergic meds.

9. Hospice would not enroll Mom until she could not talk and was bedbound and even then she lasted 18 months.
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Reply to brandee
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The first thing you need to get is an accurate diagnosis.
See her PCP first.
See a Neurologist and or a Neuropsychologist.
You need to decide if you can manage her care.
You hire caregivers to help you. Mom pays for them from HER assets.
Then you may have to decide if there might be a time that you have to place mom in Memory Care. Taking care of someone with dementia is not always an easy thing to do.
If you plan on keeping her at home get a Hospice evaluation as soon as possible. The help, support, supplies and equipment that you get from Hospice is invaluable. I could not have managed what I did for my Husband if it were not for Hospice.
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Reply to Grandma1954
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Marysmomma93 Oct 4, 2025
I wasn’t sure about getting the testing because it seems so demeaning/depressing for her to be told she has dementia and I already feel she will be diagnosed with early onset. Her PCP said she would set it up. Hospice said because she is not on oxygen and can do things for herself (feed, get dressed) that she did not qualify for assistance. I feel guilty hiring help when I am here to do it but I need a break as well.
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