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kirahfaye Asked February 2019

We had a devastating visit with my mom's neurologist today. Is there a checklist I can work with to keep track of things?

Today, my mom was diagnosed with Dementia and ALZ...... My mom has had degrading memory issues for the past 1 1/2 years along with vivid dreams and false memories. She was put on an anti-hallucination medication 2 months ago and while it has helped some there are other areas where she has actually declined. The one that made the doctor's head snap up was hearing that she had turned on the gas stove while home alone causing gas to leak out. We have no idea how long it had been on (not too long apparently as we have pets, including a bird). The thing is, she is terrified of gas stoves because she had a school friend die in a gas explosion.


I am caregiver for my adult daughter (also this doctor's patient) as well, and he told me it's too much for me to handle. My mom needs someone there all of the time. He suggested calling the local hospital and talking to a social worker. I'll do that, but I wanted to ask here if there's a check list or list of steps online that I can work with to make sure I have all of my ducks in a row. I have dyslexia and find a list that I can check off or follow makes it much easier for me to keep track of things.


I'm beside myself, as the saying goes.... my mom is really unhappy - or she was. She actually might not even remember it right now. I have to explain the process with her recent cataract surgery at least once every day (so she understands why everything is blurry right now) so there's no telling - and I'm not sure I want to bring the subject up again yet. Thanks, everyone!

Toadhall Feb 2019
The doctor doesn't see her every day, so you are the best judge of her condition. Remove the knobs from the stove at once. The childproofing is absolutely necessary while you look for an assisted living or memory care. Lock up everything that could be dangerous. If a child trys to eat detergent pods, she may try it too. I knew of a person with dementia who ate an entire tube of toothpaste. Toothpaste is dangerous in that quantity. You have to think in those terms. You can get a simple alarm for the front door which will go off when it is opened. It's not just the dog who may wander off, you have to worry about her too. "A place for mom" website can help you find facilities.

TNtechie Feb 2019
I suggest you immediately check into any adult day care opportunities in your area. Having several hours a day where she is in a safe environment and you don't need to watch over her will decrease the stress for both of you and extend the time your mom can stay in your home.

Safety proofing your home ASAP is important too. Medications, including OTC stuff, needs to be secured. Cleaning supplies, bug sprays, electric craving knives, etc. all need to be secured too - you may need to install a lock on a closet so you can put this stuff away. Remember your mother may confuse what something is and try to use bug spray as hair spray so you need to secure anything that might be harmful if used inappropriately.

Begin looking at MCs and NHs in your area for one that's a good fit for your mother. Remember larger is not necessarily better for dementia patients; often smaller resident homes can provide better care than a larger facility, at least until the final stages.

Then comes the Medicaid application. If your mother doesn't qualify now then at least you will know what needs to happen for her to qualify.

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surprise Feb 2019
We found a nice memory care home for mthr. It's made so the residents are allowed to move about as they wish, have a big living room with no lamps to crash, have a sitting room with rockers where they look out on to the fenced courtyard where they can sit when it's nice out. When the home discovered mthr liked to water plants, they hung some easy to root plants until she drowned them by watering them daily (she also trailed water from her bathroom). They substituted fake plants so she would not drown them and took away her milk jug some sweet cook innocently gave her. :)

MC here is not covered by Medicare or Medicaid, but is private pay. Mthr scrimped and hoarded money all her life so she would be protected in her old age. She's now in her old age so she is paying with her own money. I have no desire to inherit money she should use to take care of herself.

I wish you well! POA is the first step towards getting a placement if your atty feels she is still competent to sign. It's a pretty low bar.
kirahfaye Feb 2019
That sounds almost idyllic, Surprise. I'm glad you found a place where your mom is happy and well cared for. I talked with her MD a couple of hours ago and while she recommended looking into a MC facility I am not quite ready for that step yet. I know it is coming and I'm going to start researching (however we live in the country and I suspect the one facility I'm aware of might be our only nearby option). Our doctor is going to set up a visit from a home care nurse and a geriatric psychiatric nurse for assessments. She also told me not to hesitate to call her - she went through the same issues with both her grandmother and her mother.

I do have all of the necessary legal documentation already, also. So glad we took care of that 1 1/2 years ago.
kirahfaye Feb 2019
Also, I find it interesting and a little disconcerting that apparently someone (forum administration) changed the title to my post and added the request for a checklist. That wasn't even my original wording......

NYDaughterInLaw Feb 2019
The Alzheimer's Association has a "Home Safety Checklist". Type that into your search engine and it should pop right up. It's a 2-page checklist that includes general home safety tips as well as tips for each room where there are hazards.

At this point, I agree with looking into medications. Zoloft and Xanax help my FIL who also recently got a determination that he has dementia. He will never be the same person I remember and these medications can help with depression and agitation.

It's a long good-bye. My heart goes out to you and your family.

Sunnygirl1 Feb 2019
With what you have observed and the diagnosis, I'd make arrangements immediately to have someone with her at all times, until you explore the options and make permanent arrangements. While you may explain follow up surgery care to her, she likely is not remembering what to do. Plus, leaving on the gas....it's quite risky. I'd make sure the person observing her knows that she can't be left alone. She could turn the gas on again. I'd take major precautions to protect her. I'd find someone to stay with her while you figure it out. She could mistake medication, start fire, let stranger inside, wander, etc. I never thought my LO would wander, but, she did. It's quite scary. She may not even realize what she's doing.

There are agencies that kind help you find options, but, I might start by obtaining a professional assessment to see what level of care she needs. First, I'd make sure you have signed Durable Power of Attorney, Healthcare POA and Advance Medical Directive. An attorney can advise you and assist with the legal documents you need and if mom is competent to sign them at this point. I'd likely start by visiting some Assisted Living facilities, preferably one that has a Memory Care unit, because as the person progresses, they may need this specialized care.

If she's unhappy, I'd explore meds for depression with her doctor. It really helped my LO. She cried most of the time and worried incessantly.
kirahfaye Feb 2019
Off site care is the last option for the time being - although I'm logical enough that I'll start looking into it, also.

She is also on an anti-depression/anxiety medicine. When I mentioned she was unhappy and crying it was over the diagnosis and her fears about her future.
polarbear Feb 2019
So sorry for the bad news about your mother's Alz and dementia diagnose. My mother, too, has Alz. It really is a terrible disease where the patient's brain dies slowly, and the person loses the essence of who he/she is.

With regarding to the gas stove, at Walmart or Target, you can buy child-proof locks that you can put on the knobs so that they can not be twisted and turned on, or you can take off the knobs altogether.

There are many useful articles about dementia/Alz on this site that give you more info and tell you what to expect, the stages, how to deal with the various disturbing behaviors, how to take care of the caregivers, etc. Just search around the site. And in the forum, there are many posts from other caregivers who have been there and done that and know how bad things can get. I'm sure more people will reply to your post soon.
kirahfaye Feb 2019
Thanks - I hadn't thought about needing to "child proof" for my mother, but you are right. Good idea. She has also left the front door slightly ajar a couple of times and we have a dog who likes to escape (fortunately, he hasn't figured out how to paw a heavy door open.... yet). I was up around 5am this morning and heard a crash in her room and found her holding her huge, heavy 1970s lamp up off her, but couldn't find the strength to prop it back up. It seems she decided to turn it on in the dark and pulled it down instead. It's not the first time. I've wanted to get rid of it all long, but now I'm going to have to insist on it.
Ahmijoy Feb 2019
I’m so sorry for your Mom’s diagnoses. If it’s any comfort, dementia/Alzheimer’s can be a slow moving disease. You will have some time to make plans. Being a member of this forum is a good first step. Most of us here have experienced loved ones with this disease and we all have different stories. There are some things you may want to consider for right now and for the future. Do you have Power of Attorney for your mother? If not, consider going to an attorney and getting one while she is still able to sign. While you are there, ask what else you need to do, like if she owns her own home and what you will need to do if she needs to sell it.

Do you plan to be her caregiver and your daughter’s as well? Think long and hard about that. Before you actually do it, you might think you will be able to handle it. This is why you need to visit here often to read about other’s experiences.

Good luck. Don’t let it overwhelm you. One step at a time.
kirahfaye Feb 2019
I have had all the legal documents since my mom moved up here August 2017 and her home in Florida is in foreclosure. I have also been her caregiver since then, but it's difficult - I am really impatient with her and get angry, frustrated and stressed way too easily.... She is often stubborn, petulant and childish. Her memory issues and forms of hallucinations have continued to degrade. She isn't the same woman I grew up with. However, up until yesterday's visit, both her medical doctor and the neurologist have both chalked it up to "old age". I'm going to call her regular MD today and see what they suggest.

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