Caretaker of Mom with new Dx of Alzhiemer's Dementia

JEM21 · May 20

Hello - My mother (78) has fought me every step of the was through her Dx of dementia and now Alzheimer's. Today we saw a memory doc to discuss the possibility of the new medications for those with early onset. I was hopeful this would help my mom prolong the progression of Alzheimer's. Unfortunately she does not qualify as her MRI showed she is much further along than she presents. I would appreciate any advice anyone has about what I need to know as I begin this journey taking care of her. As I have read through many of the messages you all have written my heart breaks at all the very young Dx. Thank you all in advance for any tips, tricks, prayers, etc.

charley0419 · May 20

my wife on this journey now since diagnosed with mild dementia, what ever the hell that is, 3 yrs. Doing pretty well no driving get confused repeats a lot and hasn’t cooked in years. Take care of herself always looks great and neat. On Memantine and Donepezil. She’s holding her own compared to do many others on this site, I know can change in a moment but all we really have is hope my with is 78. Keep the faith. It will all be on you no matter what friends and family tell you. Sorry but true fact

jfkoc · May 20

Was your memory care Dr a neurologist specializing in dementia? Were other drugs discussed?

jscott · May 20

https://alzconnected.org/discussion/comment/243675#Comment_243675

Exactly the same place here. I could write your post word for word. I am always anxious about the future but today is good. Diagnosed nearly 4 years ago. We do exercise religously, walk 4-6 miles daily, stretches every morning, eat low fat and healthy, try to get good sleep and do our best to socialize. Praying for more years but aware that things can and will likely change.

H1235 · May 20

Here is what I would recommend. Are legal matters in order (DPOA, living will, will). If your dad is still alive consider what happens if something happens to him. My next suggestion is to learn all you can. I find the unknown scary. While you never really know what is to come with dementia, a basic understanding may help. How you approach a pwd can also make a world of difference. Understanding how important it is to avoid correcting them, the skill in diverting conversations to avoid conflicts, that kind of thing. No one wants to take independence from our parent. Don’t let this stop you from doing what needs to be done to keep her safe. When it comes to living alone, driving and managing finances it’s best to act rather than react. You don’t want to deal with a car accident, lost finances or a house fire. This is tough stuff and the people on this site are wonderful and knowledgeable. Ask questions or just vent. I have attached a few links I think may be helpful.

This is a great staging tool. It will help with where she is at and what might be to come.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

This is a good article that I think explains things well.

https://www.smashwords.com/extreader/read/210580/1/understanding-the-dementia-experience#hlangandcommun

This will help with managing someone else’s finances

https://www.consumerfinance.gov/consumer-tools/managing-someone-elses-money/

I hope this helps.

SDianeL · May 21

learn all you can about the disease. It will help you help her. The book “The 36 Hour Day” helped me. Also search for Tam Cummings videos online. Come here often for help and support.

JEM21 · May 21

https://alzconnected.org/discussion/comment/243677#Comment_243677

He was. mom is on a memory medication for dementia and he said that and one other medication are all she has at this point except brain and physical exercise.

JEM21 · May 21

Thank you!

siebert · May 21

I’m new here…it was hard to accept my husband having Alzheimer’s but I knew for awhile something was wrong. But reality has set in and I’m dealing with it..the hard part is he knows he gets confused and gets depressed..he’s on citilapram but has nite sweats w it..any other suggestion would be helpful. I will be talking to his Dr. I know it’s all trial and error. Thanks in advance

Sandi Roe · May 21

https://alzconnected.org/discussion/comment/243726#Comment_243726

my DO(dear one} I had to learn all the abbreviations to understand some of the words, is in the exact same place. He is Alzheimer’s 3-4 diagnosed 2024 but showed symptoms about 4 years ago. This is what I’ve done so far😏Neurolgist has him on 10 MG of Donepezil just raised from 5 mg. Took him off Memantine saying it was used for late stage. I sold his car because that was the only way I could get him to stop driving, I have my own car, he still carries the key on his belt but doesn’t drive. California is a mandatory report to DMV so he had to take a driving test, which he passed😜but I still don’t let him drive. I took over finances about a year ago, he just gets the numbers very confused and payments we not being made. All guns sold or given to his sons, 2 are locked in the safe that he can’t remember how to open. He still loves working in the yard, we play crib every night. Still working on the alcohol which he really refuses to give up. All in all he is not as bad as some on this site, all doctors say it will only get worse, I know that is true. When he doesn’t get a good night sleep, which is often, days are worse. Beware of their pills, he still takes some without my knowledge. I let him fill his pills then take them when he’s not looking to change and fix them. We were both widowed 18 years ago, we did not marry so I really have no obligation to his debt. I will care for him as long as I can then his sons want to take him. He is 86 I am 81. I have no idea how long this journey will be, it certainly was not on my bucket list. Wishing many prayers and strength as a caregiver we all need it, hugs Sandi

dayn2nite2 · May 21

Here is my more pessimistic view of the disease, having been through it with my own mother (developed in her late 50s).

The medications - useless or will seem to work for a few months and then they slip back to where they were. There is nothing in the pipeline that's going to be a game-changer in the near future.

Physician - Get a geriatric psychiatrist on board. This will be the most useful doctor you have (other than the PCP for all other things). Neurologist visits are a waste of time. Minimize the number and types of appointments she has. The goal here is only care for pain or distress.

Caregiver - educate yourself about UTIs causing behavioral disturbances and working with the disease (accepting their reality to get them over distress). Avoid "reality-based" responses, arguing with the PWD or opposing the PWD when they are communicating something unless it is life-threatening.

Caretaker of Mom with new Dx of Alzhiemer's Dementia

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