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He often needs direction as how to do very simple tasks like fill out forms, etc. I am now handling most of the bills, etc. I do not know requirements for memory care. Some days he seems fine. What should I do?

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Good Afternoon,

My mother started that way. I had to take over the finances. I noticed her handwriting was small and not in a straight line. It was the beginning stages of Lewy Body Dementia.

Everyone's situation is different and I am certainly not diagnosing anyone but have you paid a visit to a Geriatrician Neuro Psy Doctor. Your husband's primary care doctor can assist with a referral.

Things start out gradually and let's face it everyone wants to remain at home, myself included.

Lewy Body Dementia affects the "executive functioning skills"--for example, my mother cannot follow more than 2 directives at a time. She cannot write a check, open a jar nor fold a towel "neatly" like she would prior to her diagnosis.

In her earlier life my mother was the mainstay of everything--she filled out all of the college admission forms, took care of the elderly in the family, Church Committees, you name it. Very active, walked two miles per day and attended daily mass.

The Lewy Body is such that some days are better than others. Kind of similar to what you described "some days he seems fine". The symptoms fluctuate. Mom used to shuffle and had a gait issue. She has had multiple hospitalizations "before" all of this came to light. We didn't know what to think.

At present, mother attends a 4-hour one morning per week respite program--RN on duty, speech therapy and physical therapy. Some offer transportation, I drive her. It gives me time to get things done without worrying.

I invested in an UPWalker Lite--$495. Best investment we ever made. Just returned from the market and Mom walk the entire market 20 aisles. The gray aluminum walkers are junk. You have to get a script from your PCP and order the better product that will keep your husband's balance, breathing and posture in tact.

You don't want a little thing to become a big think. There is a lot of help and in home services for people like us. You can't do this alone. The VNA's with the order from a doc with help with occupational therapy (i.e. brushing teeth, combing hair, etc.) If things progress you can request a "male" CNA for showering.

Call on the troops for homecare but first you need an evaluation. This is just my story. But read what people write in and see what chimes with you.

You didn't say how old you are but my mother is soon to be 84 and I am in my late 50's. If you are both up there in age it would hard to put the walker in the trunk so you may have to ask for help--Church, friends, neighbors, VNA, respite care.

The medical durable equipment is usually covered by insurance.

I hope I was helpful to you. I have been in the trenches and I hope I can make your life easier.
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The simple answer to your question is that you can keep him home as long as you want to. But eventually it will come down to whether or not he is safe in the home and if you are safe caring for him.
And you can't expect someone with a broken brain to be "much help" as he more than likely doesn't remember what to do, so you're going to have to pick up the slack. Now that may mean hiring folks to take care of your lawn/yard if that's something he usually did, hire a house cleaner to assist you and make your life a bit easier, and eventually it will require in home aides to come in several days if not daily to assist you with him and give you much needed breaks.
Can it be done? Yes. Will it be hard? That would be a BIG yes as well.
The best thing you can do right now is to educate yourself about dementia as that will best prepare you for the road ahead. I can't stress enough the importance of learning all you can about it, so you won't be blindsided when things come up, because guaranteed they will.
Teepa Snow(who is an expert in the field of dementia)has many great videos on YouTube and has also written several great books. The book The 36 Hour Day is also a great reference book.
I was my husbands caregiver in our home until his death in 2020 from vascular dementia. And while there were days when it was beyond difficult, I was and am very grateful that I could keep him at home and allow him to die at home like he wanted to.
But please know that my situation may actually be the exception to the rule, as many folks do end up having to place there loved one because it just gets to be too much. Only you will know if and when that may need to be done, so for now, just enjoy whatever time you have with your husband and don't waste your time worrying about what may or may not happen. That's a waste of your time and energy. Just be prepared best you can and get your "ducks in a row."
May God bless you and keep you.
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indubuque Oct 2022
Thank you so much, Funky Grandma. I am familiar with Teepa Snow and have watched several of her videos. Am also reading books and articles. I so appreciate your blessing. Thank you, especially for that!
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Make sure you get a poa and his will is in order. Next learn to deal with it. It is mostly about your mental state than theirs. Once I understood my wife’s mental decline things got better. I am much more tolerant and let things go. I only get firm when her health is directly affected. And I take care of all her bills and finances. I do not know how the story will end.
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indubuque Oct 2022
Sample,
When you say POA, do you mean for financial decisions, healthcare, or both? Our Psychiatrist gave us the form for regular POA and said it could be activated by a call to him or to our GP. Is the healthcare one the same as a living will? Thanks.
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The answer very much depends on how his disease progresses and how much care you are willing to take on, everyone's line in the sand is different. My late uncle was diagnosed with MCI (mild cognitive impairment) and although he had days when he was obviously struggling he never progressed to dementia in the decade after that diagnosis. Of course there are many others whose dementia progresses, and sometimes swiftly. Family caregivers often find themselves snowed under because added tasks accumulate gradually and each additional burden seems doable - at least until that last proverbial straw.
I think at this point you should seek out a diagnosis, not just because some causes of cognitive decline are treatable but so that you have a documented history if you are ever questioned by family (and others). Then learn as much as you can - there are countless books, websites, YouTube videos and forums like this to help you get a realistic picture of what dementia is and where your tipping point lies.
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So difficult, may God give you both strength. Ducks in a row is the best solution indeed. Know what is around in home health care and memory care that would fit with your needs, location, values, finances. Talk to office of aging and resources in your area. Visit some of the memory care places (They are marketing so remember a grain of salt.) Figure out, with help if necessary, what and how you can afford things. Have a plan. My experience was the decision comes suddenly often. And it is too stressful then to plan well. Also, remember that your own health and ability is not guaranteed, have a plan for yourself and him in those circumstances. Sorry to be such a downer, but this is the usual situation as we age.
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I changed my husbands doctor to a Geriatrics one and made a big difference. He sent him to a neurologist for evaluation and he had MCI which has progressed to dementia 2-1/2 years later. A neuro can determine where he is at and best way to treat it along with doctor. Changing to Geriatrics doctor was the best decision we made for him. Ichoose to take care of my husband at home and also have had to take on all responsibilities for the household. Please while he is cognitive go to a elder care attorney and be sure you have all legal docs to go thru what you will need to do this. Don’t wait until he can not make decisions as it is much harder legally. This was the hardest for me but necessary. It will be your choice to put him somewhere or take care of him. I want my husband to have the best quality of life surrounded by family in our home as possible. They will have good and bad days and do will you. Educate yourself of all of this so you are prepared and get help when needed. I knew if he was in a place I would be there all the time after 40 years of marriage with him so I have him in his own house and there are many memories here for him. I wish you well and give yourself Grace when needed as this is not for sissies.
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How was your husband diagnosed? I am having the same issues, but am unable to get him to get tested. I really want to keep my husband home and take care of him.
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indubuque Oct 2022
Gdeering,
My husband was having dizzy spells and panic atttacks, accompanied by several falls. He also had a "spell", seeing auras while driving and had minor accident which he did not realize he had. (Police saw it on tape.) We told our GP and he ordered a series of tests: opthamology, holter monitor, blood work, ct and MRI of brain and a neurocognitive test (3 hrs) Also just this week he took a test for driving ability which confirmed the diagnosis of moderate dementia, likely Altzheimer's. Like you, I am keeping him home as long as I can.
Could you convince your husband that the testing would help you in taking care of his needs? With a diagnosis, you will have a much better idea of what you are working with and how to help. He may not need all the stuff we went through, but just telling the doc that he is having some memory (forgetfulness) issues is a start, and the doc can take it from there.
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seems like your husband is fine at home … of course he’s less able with
cognitive decline … as long as you both are safe healthy and you’re able to manage his care … educate yourself … there a different types of dementia .. some aggressive hallucinations delusions and others much more gentle memory loss.
have patience and try put yourself in his shoes …
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In Colorado, the patient’s doctor has to determine if the patient qualifies for assisted living or memory care before the patient can even move to that facility.
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indubuque: You had received twenty four comments to your separate thread of October 12, 2022. Perhaps you should be prepared in researching managed care facilities now so at least you will have an idea WHEN to transfer him from the home setting to possibly Memory Care. Best of luck.
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