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My Mom has been living with me and my husband for about 5 years now. She has dementia and it is getting worse as they always do. My main concern with her is that she has lymphedema in one leg and I care for it constantly. She still gets cellulitis every now and again and it is something that cannot be helped. It is a vicious circle with this condition. It is also very life threatening. If she does not tell me right away, it can go from 1 to 10 in an extremely short amount of time. There have been several instances since she has been living with me that she won't tell me until it is at a 10 and I have to call 911, or if she is able, get her into the car and get her to the ER right away. Then I get to argue with the doctors on what is wrong with her. Loads of fun. She spends anywhere from 2 to 3 days in the hospital getting loaded up with antibiotics and then she gets sent home again. The other thing is she has extemely low blood pressure and doesn't like to drink much fluid even though I have expressed the critical importance of this and have her adding electrolytes to all liquids. She has passed out from dehydration and no oxygen is getting to her head. Again, this can happen in seconds! I have already cut my work down to part time so I can keep an eye on her but she is getting worse memory wise. She doesn't remember that it wasn't more than a month ago we were at the hospital again for cellulitis. She wasn't feeling well that evening but instead of letting me know, I found her incoherent in her bed the next morning. By the time I got her to the ER, she was vomiting on herself and passed out waiting to be admitted! She recalls none of this. Sometimes I wonder what to do. Do I quit my job entirely and watch her, do I admit her to a memory care facility? She can still do a lot of things herself like getting dressed, showering, preparing simple meals, cleaning her place but she will not call me when she needs me even though she is steps away from me. This puts enormous stress on me because all I can think about is finding her dead one morning. Her common sense is gone. She has an emergency button that would bring the paramedics in 2 minutes but she forgets what that is even for. I find myself wondering what would be the smartest way to handle this without her going broke being in a facility or hiring somone else to watch her when I can't. Any of you who know me know my brothers are useless and will not help out so it's just me. She was an RN that worked in skilled nursing facilities her whole life which is why I am doing my damnedest not to send her to "deaths waiting room" but this is starting to become a real quandry on what is best for her under the present circumstances. It's eating me up inside. She refuses to go to any adult day care saying she is shy and would feel terribly uncomfortable and have nothing to say because she is so self conscious about her memory. It's a catch 22. Anyone else gone through this?

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My mom is on IV antibiotic for a skin ulceration on the bony
protrusion that developed on her spine.
I'm relieved she's getting good care in this nursing home.
I couldn't do it as well at home and I sure tried.
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You say that she doesn't know how to press a button to call 911. To me, if a person cannot call for emergency help, it's too risky to leave them alone. That would be a major sign that constant supervision would be required.

I might have her assessed to see what level of care that she needs. I'd discuss her propensity for cellulitis. Not sure if that would mean NH over MC. I'd keep in mind that her needs are only going to increase and she's not likely to become more compliant and cooperative in her care. I have had cellulitis and it is VERY PAINFUL. How she could have that and not tell you, speaks volumes. Often dementia patients are not able to verbalize their pain. I would think that a facility who is aware of her condition would be on top of it and check her daily for symptoms.

Considering the challenges that your mom's care brings, is if feasible for you to stay home and provide care around the clock? She may qualify to have outside help to come in, but, as she progresses, how much support are you going to need and is that cost feasible?

Would you be able to leave your job and income to devote to her around the clock care? For some people, it's doable, but, it depends on various factors.
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Thanks for your answers. Unfortunately, because of having her leg wrapped up in compression bandages, it is not easy to spot by looking at her leg. She starts with shaking like she has the chills, then sick to her stomach and it goes rapidly from there. The compression is crucial or her leg will blow up like a tree trunk very quickly. I was trained by a professional how to care for her leg. She gets cellulitus about once a year.
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I can't speak for Memory Care, but in a Nursing Home (at least in the one that my mom is in) they notice changes in her skin quite promptly.

Have you spoken to your mom's doctor about the idea of a Visiting Nurse coming in to check your mom's leg every so often? You certainly have an idea of how often it flares; how often would it need to be checked, do you suppose?



As for Day Care, I'd take her and stay with her, one time. She'll find out that everyone just talks drivel anyway and be comfortable enough to go alone the next time, I'll bet. It can't hurt to go.
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Rainey, in a perfect world you'd say yes, a facility must be safer - all those trained people around, regular checks, access to the full range of treatments and equipment...

But as I'm sure you will agree, having had all those lively discussions in ER, medicine and nursing care are not always the sparkling models of best practice that we would like them to be.

And because of the nature of your mother's extra care needs, in that they don't look like much until they're life-threatening, she is exactly the kind of person to whom terrible things might happen that wouldn't really be anyone's fault. All they did was not spot a clinical sign that is, to be fair, quite hard to spot.

Whereas you know *exactly* what to look for, and you can tell when things are looking iffy much earlier than the standard nursing aide would be able to.

By the way, and it is only by the way, you know better than I do that your mother is of no help to you any more. She can't be. She won't press the button, she won't remember what she's meant to do, she won't tell you if anything's wrong. It's just, the sooner you start working on the assumption that she isn't going to participate, the less frustrating it will be.

The advantage of hiring in care would be that you can be a limb care Nazi and design a customised routine. The disadvantage is that the full burden of responsibility then falls on you.

I just want to check something.
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Rainey
Many of us go through this but you have the added burden of a chronic condition

I let my mom stay home alone while I was at work for far too long and it ended with a very bad fall - fortunately while I was in the house

At a certain point it won't be safe to leave your mom alone

I too am doing everything I can to keep mom out of a nursing home - her rehab experiences were awful - she has been in a private pay memory care facility for a year and I have private aides with her 12 hours a day and she still gets UTIs nearly every month and I'm afraid she will outlive her savings even at 93

There is no one size fits all answer - a lot depends upon where you live and financial resources

Start looking at places and at least have a plan in place so you don't end up making a hasty decision because the 3 day Medicare clock is ticking after a hospital stay

In the meantime try and get some help in to give you a break and get mom used to being around strangers and having them help her 

Dementia is a long tiring journey for everyone 
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