I don't live with my mother, but she does live on the premises with my niece and her husband, Jerry. Jerry is a godsend. My mother has dementia and would forget to take her meds and even to eat. Jerry has cooked every meal for my mother for several years and seen to it that she gets the proper meds at the proper time. My mother's health has improved considerably.

A couple years ago we moved mother into a brand new prefab home on Jerry's rural lot. She lives on the driveway and sees all the daily hubbub of activity. Mother is inactive and walks with a walker. Her day consists of getting up and watching TV all day, eating when Jerry brings the food over, and going to bed. She has been chronically dizzy for several years. That and other symptoms seem to point to a series of small strokes taking out parts of her brain. While she may be losing the near term memory, if you ask her who she's going to vote for, settle down for a well thought out discussion. Last week things got a little worse.

Suddenly her dizziness got worse. She describes it as being motion sick. Consequently she has lost her appetite and fears getting out of bed in case she would fall. Jerry now will sit with her while she eats, or if she just cannot eat, he will sit with her until she finishes a full can of Ensure. So she is getting all her meds, three meals (such as they may be), and visits with Jerry. Jerry works during the day but the job takes him all around his home neighborhoods. Jerry's boss is aware of the situation and encourages Jerry to visit mother a few times during the day as long as he gets his job done.

With this new dizziness, mother's doctor suggested she be evaluated by the local hospice, which is run by her doctor's partner. Not knowing what that entailed, they came out to visit her yesterday. First of all mother was angry that strangers came into her home. She has always made it perfectly clear to us and anyone who will listen that she does not want to live in a home or have any extra special care to prolong her life. Well, she is far from dying in my (albeit remote) opinion. They recommended she either be institutionalized or that a 24 hour service come to be with her. Then they explained to Jerry that if we refused to do that, there were laws in Calif that would force us to comply or we would be arrested for abuse of the elderly.

Does the hospice, who has a financial interest in my mother's health, have the sole right to determine whether we pay them or not? And whether we go to jail or not? I can see the need for child and elderly protection anti abuse laws, but nobody is being abused. Is my mother obligated by law to cooperate with people she does not want to cooperate with?

I have to agree with MB here.
Wheres the diagnosis?
Stroke by default? Whats that? Either she has had a stroke or she has not a scan will confirm or deny that.
I might be steppin on some toes here but if this were my mother Id be in that PCP's office askin a whole lot of questions to get to the bottom of this.
Dizziness and loss of smell AND taste indicate there is much more going on than a simple cold or flu....and for 10 years?
Like Gypsy said a good EENT specialist is in order IMHO.
Or...
If this is organ failure (Im thinking this is what you mean by her body shutting down) as her PCP said which would include lungs, kidney, & heart, what backs up this diagnosis?
This would explain much of whats happening if this has been going on for 10 years.
Hows her BP or her O2 stats pulse rate BS levels etc.
These are all things I would find out from her PCP in order to make sense of whats going on here.

I too am concerned they have not given a reason for her dizziness.Having dealt with those who make hasty decisins without knowing a cause , I had to take the bull by the horn and found a simple cause for changes with my aunt.Too many times decisions are made just by sight and no examination to get to a reason.
When they learn there is a strong advocate for the afflicted they change the way they do things.
They hate to be second guesed by I learned not to give two hoots what they liked or did not like.They have strong egos.But we have to show them we have stong opinions when it comes to a loved one

dchall, I am still bugged by the diagnosis, and steering toward an affiliated facility, while threatening to involve the authorities... Maybe it isn't how it sounds, but I think you really, really should get an opinion on your mom's condition from another physician, preferably one who is not even affiliated nor practicing in the exact same area as the first... I am assuming that you are in the San Antonio area - there should be a good selection of doctors there - look for a geriatrician or geriatric neurologist to see if they concur with her current PCPs diagnosis and prognosis. Call around and check on these folks... both the doctor and the hospice he is steering you toward... something is telling me that they may not be real ethical...

I am a little confused about the living situation - do you live near your mom? If not, when did you last SEE her? If it hasn't been recently, I would suggest that you take some time and go visit her, assess her level of competency and condition for yourself and talk with her physician, etc. Something just doesn't seem right...

Hi dchall and welcome to this wonderful place. I am concerned about no cause for your Mom's dizziness having been found. Has she seen an ear,nose throat specialist? Years ago(15 or 20) I used to get a horrible dizzy feeling-it usually happened when I rolled over at night.I finally went to the dr. when I almost fell at work-I bent over to look in a desk and had to grab to keep myself from falling. Our dr. sent me to the specialist. He prescribed Flonaze and sudafed(if I was flying or driving in the mountains. Said I had narrow eustation(sp?) tubes. and that the treatment would either work or not. It does. I find I can quit using the spray for awhile but eventually I start feeling that horrible feeling when I roll.It often starts again when the pollen is bad or I have a cold. There is also vertigo that is caused by little crystals getting in the wrong place and causing the balance center in the ear to not work properly. There are treatments for that.Gypsy

Doctors are mechanics and can only tell you what's wrong with the machine... they can never tell you WHEN the machine WILL break.

Hospice can be a blessing because of the care services they offer. If you do not feel that your mother is nearing death, it may not be welcome nor appropriate. What's important is to KNOW that that option is there for you and her when it is needed. Hospice organizations are a mixed bag and often are reported on by people during their most trying times! Some report that it was like having angels of mercy; others report their experience as more like harpies of death. Talking to them may help you get a feeling for the kind of care that particular organization provides... It never hurts to learn about what's available.

It IS important for y'all to be taking a much closer concern about her condition, activities and appointments. Rely upon her to remember nothing. As people near the end of their time, they can literally be doing fine one moment, and give out the next, so watchfulness is so important!

Have you thought of having her case and care reviewed by another physician? Sometimes this can mean literally the difference between being treated and restored to a reasonable quality of life and being sent home to die. There is a reason that it's called a doctor's "opinion."

Yes, it does seem like good news becomes more scarce in this journey, but it also helps to realize that as the news gets worse, the release from misery becomes closer. Death is not a bad thing - it is a part of life and in your mom's case, is coming closer to her after a life well-lived. No need to hurry it or to push it away...

Whether it's soon or years from now, we'll be here for the duration! Thanks for the update and let us hear from you when you have time.

This message has been edited. Last edited by: Moms_Buddy,

Many times hasty decisions are made by doctors.When they have no answers they chose the easy way out.I recall 6 years before my aunt passed away one doctor said she was a candidate for hospice.I did not take his word as god.I contacted her doctor, who had been away , and she agreed with me.She was having a real bad week but bounced back with a change in meds.
Hospice is not always for those that are passing tomorrow.But they do have limits to what they accept as care.But you are never bound by what they accept.You can go off and later come back on.You are never out of the choice of accepted care.It is not death house decision.
Wonderful mom shows signs of being better.I know that makes you so happy.There has been so many viruses going around.She may have had such.
Her being dizzy would concern me as she could loose balance and fall.
Hope she continues on the happy road.

Y'all have addressed many of the issues we're dealing with. My mother is not to the point where she is continually confused. She is aware of what is going on in the moment. When you are in a conversation with her she may ask you one question a couple times, but other answers she will retain.

I had never heard of hospice but I seem to be surrounded by people who share the opinion that it is a halfway house to death. If that is so I am wondering what her doctor was thinking. He was talking about "her body shutting down." Well it has been several days and my mother is back up and moving around. We'll probably never know what happened (flu, cold, or other virus), but this event certainly sheds a lot of light on the fragility of a doctor's diagnosis. Of course my family is keeping a very close eye on her for a relapse. When the people came to evaluate the situation, mother had been told, but she had forgotten they were coming.

She has several physical issues going on for over 10 years. Those include dizziness and loss of sense of smell and taste. All tests indicate there is nothing wrong. The strokes are a default diagnosis.

Thank you for your helpful thoughts. As time goes on it seems there is less and less good news.

quote:

Originally posted by mae:
Our churches are big business.They build big buildings, have day care.Demand you give a percentage of your income to the church.What do they give back?The only one in our community that gives back is catholic charities.

Good preach! The church seems to have forgotten to read the Bible where Israel, for example, was repeatedly severely disciplined by God for failing to do justice, specifically identified as not caring for the widows and orphans.

I will note that in my area the best of the nonprofit church supported retirement communities are Catholic, Jewish and Church of Christ (one each).

BunnysGrl, nice to hear their are some good facilities coming to be.We have so darn many and they say onthing and do another.It has gotten to the pont where the more caring aides do not want to go to the places.Alot has to do with the help and where they come from.
Sadly we as loved ones have to do our own detective work to find ones that meet our criteria.I am glad I do not have to volunteer in any of them because my experience tells me, most are no well informed with the various dementias and meds for the elderly.The wages are not that bad but too many have attitudes that make me want to shake the living hell out of them.
Torp you have said it so well.We learn our rights and we apply them.They would love to deal with those less informed.Also, too many doctors have an invested interest in these facilities.We have one in our area and it has the worst reputation and continues to have its door open.
I heard ouuuur cathoclic church has opened many new facilities.Many in the suburbs.
They say one thing and are known to be very good but I would have to see for my self.Many are going to have to become volunteers in these places to get the truth.
How sad it is that the one industry that is not feeling the crunch in the economy is the medical profession and allaffilated with it.
We have to buy long term insurance to pay for our care when the families toss us aside.We have to start a savings account the moment we are born to be able to survive in our senior years.This country is going to reap what we sow.
No body cares about the other person when they are riding high.They have a big home, all the frills that come with good paying jobs.Never think about tomorrow.Then they are hit with a gealth issue and ask why me.Why did they not think why him ot her.Why not go out into the community and see what services one can render.
Our churches are no more then big buildings filled with bodies.They go to church, dress for the occassion , for that day.How much do they apply to their community what they heard in church that day.Our churches are big business.They build big buildings, have day care.Demand you give a percentage of your income to the church.What do they give back?The only one in our community that gives back is catholic charities.
yOU HEAR ALL THE THINGS THAT YOU NEED TO DO TO BE A GOD FEARING PERSON.HOW MANY TIMES DO THEY SAY GO OUT INTO THE COMMUNITY .Half have not been out of their safety zone.
My mother use to tell me to practice what I preach.I so wish we had more involvement from the churches and community.With the numbers , so many people could be helped.

quote:

Originally posted by Bunnys_grl:
Torp I just spent 4 hours today in a new facility up here and lemme tell you it was a refreshing experience for me. This "Dementia unit" had everything in it you could ask for even a room for "quite time" when a person gets agitated.
I hope I see many more of these types of facilities pop up or at least changes to existing facilities it will make the decision for folks much easier.

Oh yes. They have some really nice facilities like that here as well. In fact, they are adding one to the complex where my MIL presently lives.

The problem is, partly, paying for it. For example, when our LO started exhibiting some issues which exceeded the services offered by assisted living (she needed care, not just assistance) we found that hiring a private aide to come by a couple of times per day to supplement was cheaper than transferring her to the skilled nursing wing where she would no longer have her large private room/efficiency apartment. Yet she still had the 24/7 supervision; the attendant's desk was at the end of the hallway.

I sure miss the closets in that efficiency apartment, let me tell you. Now she just has a tiny wardrobe and dresser.

Torp I just spent 4 hours today in a new facility up here and lemme tell you it was a refreshing experience for me. This "Dementia unit" had everything in it you could ask for even a room for "quite time" when a person gets agitated.
I hope I see many more of these types of facilities pop up or at least changes to existing facilities it will make the decision for folks much easier.

I don't doubt that many doctors tell patients' families this: it's CYA for them to avoid being sued by families.

If mom has some sort of infection or other correctable condition, her cognitive abilities may well improve. If she's had a recent TIA that caused these symptoms, she may recover partly from it. Our LO went through this several times, and needed temporary additional services or some time in rehab then went back to her home with support several times a day.

If a doctor orders it, medicare will pay for home health, for physical therapy, and for a therapist to come and do occupational therapy with mom in her home. Our LO's occupational therapy was a lot of help. The therapist helped us to arrange her home and schedule so that she could be safe yet remain as independent as possible. She taught us all strategies and gave hints. I can't say enough good about that therapist. She "bought" our LO an additional year in her home.

What they need is a doctor who will give a truly unbiased evaluation, and who is actually interested in ensuring that mom isn't put into care any sooner than she absolutely needs it. It's worth a shot, anyway. That way, when the sad day comes, the family can have confidence that they have done everything.

As you all know, I'm not among those who think that ALF or SNF is evil. They were a godsend for us, and for our LO. But this family seems to believe that mom's time isn't yet come, yet this doctor doesn't have any interest in exploring other options; he's ready to write mom off.

That is WRONG! They need a new doctor who gives a rat's butt.

BC lemme clarify Hospice is in fact for people who are terminal so it begs the question why is Hospice being thrown around for this young lady's mom?
Until she tells us there is only a warning we can provide and that is to take their threats SERIOUSLY especially now with this new tale on the horizon.
This is in no way shape or form a scare tactic although being put in this position of having been questioned by APS here in California I will continue to warn any person who comes along with a story such as this to be very careful of their next move when they are being questioned and or threatened by these folks.

As an afterthought I also want to say I am finding out from my office more and more people who are seeking our agencies services are coming to us because they have been told their LO's need 24 hour supervision by their PCP's....is this a new change on the horizon???? I dont know but I find it awfully suspicious....

dchall, The people who came to visit her don't sound like hospice here. Here they only get involved with a case if the PCP documents a terminal illness and the patient and family give up trying to prolong life and focus only on the best possible quality (mostly meaning as free of pain and anxiety as possible). What hospice means in CA I guess is whatever they want it to mean.

Your Mom's PCP hasn't diagnosed her with anything terminal, has he? I can understand him ordering a visit from Home Health to evaluate her condition since she won't get out of bed now. They can certainly call APS if they think you ignore their recommendations for her care and treatment. Has your Mom been diagnosed with dementia? and if so, what cause is given? You mention strokes. Is that a guess, or have there been tests? If she has a regular doctor who has determined she is having TIAs, she is likely on a medication to prevent more of them. Perhaps you need to get a second opinion from another doctor. ( many here have reported all sorts of strange symtoms from UTIs, dizziness doesn't seem farfetched).

This dizziness must be addressed. It could be an infection, or her meds need adjustment, another TIA. Is she mentally incompetent? See, Mom has never been declared such and she can order them out of her house and they have to go. (Of course, they could go right down to the court house, and start the process of declaration) But the truth of the matter is that if she is bedridden, and "confused", she can't handle an emergency and one could happen at any time. This isn't about prolonging her life by extra special care.

If you feel that this service that came there is making unreasonable demands, and trying to bully your family, actually blackmail your family, into spending money with them unnecessarily, maybe you should be the one to have a talk with APS. Just make sure, before you do, that you have done everything possible to address the dizziness and see if she really needs to stay bedridden. This is a can of worms to be sure. Personally, I do feel that she should not be alone anymore. How you fix that, well you need to check out all options. Start with a family meeting.

They came out to visit your Mom and she was angry....Did they drop in unanounced, your Mom didn't know who or why, or was unable to understand the who or why. They will use her anger as evidence of her incompetence. After all, any reasonable person just loves to be poked, proded, examined, and evaluated by strangers invading your home unexpectedly. Yeah, right..

Now, we aren't in California but we were told that the elder DOES have the right to refuse services.

They have to be pretty far gone to overrule their wishes. The expression used to us was, "Making BAD decisions is not the same as being unable to make decisions for themselves."

Personally, I think I'd get a second evaluation by a disinterested party. There may be additional support available to make it safe for her to remain in her home a bit longer since her family is of the belief that she's safe enough. Vascular dementia tends to be a little more stable, and absent additional strokes, less progressive if they are getting their medications on schedule and remain in their familiar environment.

For example, my meals on wheels visits were as much to check on the clients mid day as to deliver food. If they didn't answer the door, I had a number to call for someone to check on them. This service is free (or asks a small donation) and I know that I delivered to a number of rural clients.

Our bottom line re our LO was whether she had the capability to recognize when she needed help, and to call for it. When our LO reached this point was when changes had to be made. Reminders to eat and meds were something we had to do for her for several years prior to moving her to ALF.

quote:

My mother has dementia and would forget to take her meds and even to eat.

Heres where it gets sticky....if in fact this young lady's mom has been diagnosed they can force the issue.
How this was explained to me was that a person suffering from AD can not at times think logically when an emergency arises therefore even having a phone in front of them makes no difference to APS or the local authorities.
If you met my MIL first time you would think shes pretty sane...what you dont see is when she passes a phone picks it up and tells whomever she is going to the bathroom and hangs up then merrily goes back to a "normal" conversation in a split second.
Watching this disease as closely as I have with my MIL is nerve wracking to say the least but I learned much from the experience.
When I have to tell someone to be careful in what they say or do around her because she has AD all they see is the sane portion of her simply because she does a good duck an cover to an untrained eye. To me I see the deficits even when they cant.
Take it from me these people while intrusive may just save a persons life if in fact there are people who dont see AD as clearly as say, we do.
If something heaven forbid were to happen to this young lady's mom, Jerry and his wife have been warned to beef up the care and while that may be not to many peoples liking I say its a hellova sight better than landing in jail for neglect charges....these people dont play and I think we have all read a few stories along this journey that confirm that fact.
As long as APS exists we caregivers have got to be on our toes

I don't believe that they are right. If mom isn't mentally incompetent, she CAN tell the APS, "No, thanks."

You might look into a cell phone or one of those "medic alert" or similar call buttons. That may be sufficient to satisfy the state. But, frankly, I would get another doctor as well.

quote:

My mother has dementia and would forget to take her meds and even to eat.

Welcome dchall. The problem here is that if she were in a bind - a fire, break-in or other emergency, she could not fend for herself without assistance. Because of her rural location, it might take longer for assistance to arrive if she was able to call 911. I don't think even cameras, a fire alarm connected to the fire department or a "Help-I'veFallenAndICan'tGetUp" device would be enough.

I hate this for her and for Jerry, but the only solution is to hire a sitter to be there while Jerry is away. Although I totally understand the need for 24/7 care (my mom is bedridden) and the difficulty of ALWAYS having someone with her, it has to be this way for her safety and for Jerry's protection from liability. This includes nighttime as well. I can't even mow my lawn without someone else here because I cannot hear while I am mowing!

While I understand that right now at this minute you believe that she could call for help in an emergency, that might not be how she would respond, especially if she was asleep or feeling poorly. If her dementia is advanced to the point that she cannot remember to take meds or eat, she is probably not functioning on a high enough level to handle or even to recognize an emergency situation. You also have to consider that her health is declining...

While there are many devices which can assist elderly folks, NONE are as reliable nor safe as having a person in attendance and that's what the law requires. Your mom, at this point, is nearly as helpless as an infant as far as ensuring her own safety.

Good luck and let us know how things work out.

This message has been edited. Last edited by: Moms_Buddy,

I just checked the Calif statutes. Welfare and Institutions Code Section 15700(b) says "It is the intent of the Legislature, in enacting this chapter, to enhance the protection of elderly persons and dependent adults by providing a mechanism for temporary emergency protective custody of elderly or dependent adults who are suspected victims of abuse or neglect, and who are found to be in a situation that poses an immediate risk of serious injury or death, and when no other means are available to mitigate the risk to the elderly or dependent adult."

and

"15701.25. 'Endangered adult' means a dependent or elder adult who is at immediate risk of serious injury or death, due to suspected abuse or neglect and who demonstrates the inability to take action to protect himself or herself from the consequences of remaining in that situation or condition."

My mother is alert and aware of her situation. I think her unwillingness to get out of bed due to the dizziness is the problem. If she needed help she would be able to call someone, assuming the phone was in reach. When her home was set up it was equipped with the disability act handholds and shower equipment. There is no gas to the stove or oven. I suppose we could pad the sharp corners and put in call buttons.