Medical Forum / Diseases and Disorders / Alzheimer's / March 2007
Visiting Angels ?
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G. Roup - 10 Mar 2007 01:43 GMT I have been here a few times before, but this is my first post. I apologize if this topic has been discussed before.
When I went over to my mother's house a couple of days ago she did not know me. She is 88 and has been declining for a while. We knew this was going to happen sooner or later - we were hoping for later.
She is, as they say, resistant to help. She insists she can take care of herself, and repeated attempts to convince her to allow someone (even my sister) to stay with her - if only for a few hours a day - have been to no avail.
But she sleeps most of the time, does not change her clothes very often, basically lives on Ensure - and is now apparently beginning to forget us.
So we have decided to try again to try and have someone be with her at least part of the day.
I saw an ad in AARP magazine about the "Visiting Angels" - a non-medical in-home care service, An internet search turned up a number of such companies: ComForCare, Maxim Health Care, Healthquest Homecare, and a few others. Some of them are franchises.
I have tried to find some information about what they are like, but all I have been able to find are the company websites.
Does anyone here have any personal experience - good, bad, or indifferent - with any services like these?
Again my apologies if this is an old topic.
Thank you in advance for any information you can provide.
GR
Evelyn Ruut - 10 Mar 2007 13:34 GMT >I have been here a few times before, but this is my first post. I > apologize if this topic has been discussed before. [quoted text clipped - 31 lines] > > GR Hi,
I never used any of those services, and we chose a different route. We took my mother in law to live with us, and we sent her to a daycare center during the weekdays, and we cared for her the rest of the time. I took the days and hubby took the nights. I also had a neighbor I paid to come and take her on a Saturday now and then. It was still very difficult since there was ALWAYS a certain level of stress involved.
I think that the home care services can be expensive, but for some they might work out OK. Others may have something to report..... so we can hope for some other posters weighing in on the subject. I can only comment on our experiences and observations.
It does sound as if your mom may have reached the stage when it isn't a good idea for her to be alone at all, even for a few hours.
If she has ceased to recognize you, and won't let even your sister come and stay for a few hours with her, how will she react if a total stranger knocks on the door and she maybe won't allow them in, or calls the police, or becomes upset? If her cognition is this bad, that she doesn't know who you are, how will she understand why strangers come to her house and try to get her to bathe or eat or whatever?
If the decline you are noticing now is sudden, it could be caused by mini-strokes. It might be time to get some sort of diagnostics in place, or at the very least some sort of an evaluation so you can find out if a home care person would be enough care for her needs.
Every old person wants to die in their home. But not everyone is cognitive enough to manage it. My mother in law couldn't remember whether she took her pills or not, so she often doubled and tripled up on them. She no longer understood a clock or a calendar, so there was no reference for scheduling them. She burnt the handles off many of her pots, and she ate food that had been laying out on the stove for three days, getting herself sick. She forgot how long ago she'd cooked it, and thought it was only just a few hours ago. She was seen with a bag full of hundred dollar bills, dropping them in public in a dangerous city setting, as she was just trying to buy a refill for her prescription (way too early because she'd taken a months worth of pills in just a week or so). My husband was with her that time and it gave him nightmares just thinking.....
She lost weight. She'd forgotten how to cook or to clean. She hadn't bathed in, who knows how long. There was a thick layer of dust in the only bathtub in the house, and she was using it for a broom closet. She smelled awful. All her clothing was filthy and smelled awful. She'd neatly fold it up and wear it again. Someone simply had to intervene and do something about it, and we lived two hours away. She got lost a block away from home in a neighborhood she'd live in for 40 years.
I tell you all of this, because oddly enough, in her form of dementia she still recognized family members right up until the end, other than one or two odd moments. Your mom not recognizing you is a very important matter. What if she thinks you are a stranger and won't let you in?
It is this sort of thing that causes many families to decide on some other plan than home care. Now if you can get someone to stay 24 hours around the clock with her, that might work, but it will be very expensive and she may be less than cooperative on her own turf. In my mother in law's case it would not have worked out as her resources would not have supported it.
In taking her here she got a few more years of somewhat decent life, clean, fed, kept busy, but ultimately her illness progression required even more care than we could give her here.
Good luck to you, and I hope your family finds a good solution. Just from what you say it appears that she probably shouldn't be alone anymore at all.
Regards, Evelyn
Tumbleweed - 10 Mar 2007 17:36 GMT >I have been here a few times before, but this is my first post. I > apologize if this topic has been discussed before. [quoted text clipped - 11 lines] > basically lives on Ensure - and is now apparently beginning to forget > us. This is going to sound harsh, so apologies in advance, but I dont think you are thinking clearly.
It really doesnt matter what she wants if she is so far gone she doesn't know her own children, you should no more act on her wishes than you would a 2 year old that wanted to be left alone.
You need to get her into care. A 'visiting angel' wont be there when she decides to wander off away from the house at 3am naked, or turn the gas on and forget to light it, or anyone of 100 other things you'll see reported here as the actions of people who dont want to go into care, think they can look after themselves etc.
Someone who pops in now and again cannot possibly be a substitute for proper round the clock care,and from what you are saying, thats what she needs. Dont expend your energy and money on a stop gap and pointless exercise looking for a part time visitor, expend it getting her into care, against her wishes if necessary. Dont discuss it with her, dont try and get her to visit places to see if she likes them, just do it. Imagine she is 2 years old whenever you have a temptation to ask her a question.
And in the meantime, you need if at all possible to get powers of attorney signed for legal and medical use.
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
Mary_Gordon@tvo.org - 10 Mar 2007 18:08 GMT Hi GR
The thing is...you are treating your mother as though she was still a competent adult, able to look after herself, understand her own problems, be rational about her situation, recognize the dangers and risks she's facing. And...she has a degenerative brain disease. She has no insight into her own problems. She's no different than a toddler who just can't understand why it isn't safe to play on the road, or pull the tail of the pit bull. She can't see what is obvious to those around her. She absolutely CAN'T be reasoned with. She's no longer capable of understanding what is the matter with her, much less figure out what the solution is.
You HAVE to act. Its irresponsible not to. Change is going to be frightening for her because she can longer adapt and learn, so of course she'll cling to the familiar. However, she's not safe, and that trumps everything else. She's not clean. She's not eating properly. She's not looking after herself. She may get lost or hurt herself or set a fire and have no idea what to do. She can't manage money. She can't be trusted with appliances, cleansers, tools, medications. She's vunerable to criminals. You absolutely cannot leave her living alone. You are going to get a call from the police saying she's been injured or worse, and you will never, never, never be able to forgive yourself for having left a sick, vunerable old lady who has a damaged brain living alone.
Don't wait for her permission. That day is long gone - she will never give it. I sincerely hope family members have powers of attorney so as she becomes further incapacitated, you have the ability to make personal care and financial decisions for her.
Just arrange what is needed. She needs 24/7 support and supervision. Almost everyone here has been through this. My MIL lived alone, and I promise you, she thought she was just fine. We had to step in for her safety - if nothing else, to ensure she was clean, fed, and not in danger from her environment, or from the endless supply of scam artists, and thieves who seek out the very vunerable and don't hesitate to steal from them or harm them.
I know this is hard and heartbreaking - but you know in your heart this can't go on. You should be making plans to move her, since even if you have someone in daily, this will be viable for a very short time (in fact, I think the day for this has passed, but you need to find this out for yourself).
You have my heartfelt sympathy in this situation, but you also need a shove out of complacency and denial. Get your skates on and see to this. If you love her at all, you need to act now.
Mary
Stephen - 10 Mar 2007 22:27 GMT >I have tried to find some information about what they are like, but all >I have been able to find are the company websites. > >Does anyone here have any personal experience - good, bad, or >indifferent - with any services like these? Visiting Angels is a home aide franchise company. They are not health care workers, but provide companionship, living care - bathing, dressing, meal prep, feeding, etc. as needed, can run errands for or with the client, light housekeeping and laundry, and the like. My Mom is in advanced Alzheimer's now and living at home with my father who refuses to hear of placing her in a facility. I made significant headway about 6 months ago as she declined further by his accepting that having someone there to help each day would be a good thing. The location that we are dealing with may be different than others, but ours is based out of Morristown, NJ. The minimum time that an aide can be contracted for is 4 hours in a single day and a minimum contract of 12 hours per week. The charge for this is $18.50 per hour. Sleepover service can also be had for 10 hours at $130 with the aide sleeping 7 of those hours. We started with 4 hours per weekday. It takes some of the caregiving burden off of my elderly father. My father had minor surgery at the beginning of November and we had Visiting Angels provide a live-in aide for several weeks at $185 per day during his recovery. We then continued with 6 hours per day Monday through Friday and 4 hours on Saturday. Thanks to Visiting Angels, I don't need to go there daily to check on them, and I know that my mother is properly cleaned and cared for. I'm very pleased with the service that they provide. In our case, the aide washes and dresses Mom in the morning and feeds her breakfast. She then stays with her and watches her so that my father can run errands or just read the paper and the mail. She feeds lunch to Mom and makes sure that she is clean before heading home. I imagine that we will be increasing the hours in the future as Mom declines further. Note that the services of an aide like this is not covered under Medicare. -steve
Mary_Gordon@tvo.org - 10 Mar 2007 23:04 GMT Steve, with all due respect, your situation is very different, in that your father is alive, and able to care (albeit with supports) for your mother.
A loved one with advancing AD or other dementia who lives completely alone is a whole other universe. We did have a part time aid for my mother in law in the earlier stages of her Alzheimers. She had a housekeeper who came four hours a day, five days a week, and we also had a visiting nurse, a visiting physiotherapist, meals on wheels, a visiting social worker, and family close by. At that point, she could still use a telephone, and we were only 15 minutes away, as was her sister.
However, that only worked when she was in early AD. By mid AD, the problems started to stack up, including a drug overdose, and we realized that she needed someone with her 24/7 - and at that point, she was in infinitely better shape than G. Roup's mother.
Below I have pasted the most commonly used set of "stage" descriptions for Alzheimer's. My educated guess is that GR's mother is well into Stage 6 already. What's ahead is not pretty - incontinence is not far away - not a person who can be maintained in her home alone safely with a few hours a day of live out support.
Mary G.
Adapted from Reisberg, B., Ferris, S.H., Leon, J.J. & Crook, T. The global deterioration scale for the assessment of primary degenerative dementia. American Journal of Psychiatry, 1982.
Level 1
No cognitive decline - (or Normal Adult). No subjective complaints of memory deficit. No memory deficit evident on clinical interviews.
Level 2
Very mild cognitive decline (forgetfulness or normal older adult). Subjective complaints of memory deficit, most frequently in the following area: (a) forgetting where one has placed familiar objects; (b) forgetting names on formerly knew well. No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern regarding symptoms.
Level 3
Mild cognitive decline (early confusional or Early AD). Earliest clear- cut deficits. Manifestations in more than one of the following areas: (a) patient may have gotten lost when traveling to an unfamiliar location; (b) co-workers become aware of patient's relatively low performance; (c) word and name finding deficit becomes evident to intimates; (d) patient may read a passage of a book and retain relatively little material; (e) patient may demonstrate decreased facility in remembering names upon introduction to new people; (f) patient may have lost or misplaced an object of value; (g) concentration deficit may be evident on clinical testing. Objective evidence of memory deficit obtained only with an intensive interview. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms. Deficits noticed in demanding employment situations.
Level 4
Moderate cognitive decline (Late Confusional or Mild AD). Clear-cut deficit on careful clinical interview. Deficit manifest in following areas: (a) decreased knowledge of current and recent events; (b) may exhibit some deficit in memory of one's personal history; (c) concentration deficit elicited on serial subtractions; (d) decreased ability to travel, handle finances, etc. Frequently no deficit in the following areas: (a) orientation to time and person; (b) recognition of familiar persons and faces; (c) ability to travel to familiar locations. Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawal from challenging situations occur.
Level 5
Moderately severe cognitive decline (Early Dementia or moderate AD). Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.
Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to orient in familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include (a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror; (b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities; (c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur; (d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.
6a - Requires Assistance dressing 6b - Requires Assistance bathing properly 6c - Requires Assistance with mechanics of toileting 6d - Urinary incontinence 6e - Fecal incontinence
Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control. The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently present.
7a - Speech ability limited to about a half-dozen intelligible words 7b - Intelligible vocabulary limited to a single word 7c - Ambulatory ability lost 7d - Ability to sit up lost 7e - Ability to smile lost 7f - Ability to hold up head lost
G. Roup - 11 Mar 2007 04:48 GMT Thank you all for your responses - no need to apologize for honest expressions. When my sister and her husband came over today, I showed her the posts before we went over to our mother's house.
When we got there mom was in good spirits, and recognized us all - of course.
One of the reasons we have been reluctant to do things "against her will" is that she has more relatively good days than bad days - but we know that is changing. And we know that the fact that she has bad days at all means that we must do something more than we are currently doing - whether she likes it or not.
The problem is not being sure what or how.
So we are going to take the suggestion to have her evaluated by someone who works with Alzheimer's patients, and determine what level of care would be best for her now. And then see what we can do from there.
GR
Evelyn Ruut - 11 Mar 2007 17:18 GMT > Thank you all for your responses - no need to apologize for honest > expressions. When my sister and her husband came over today, I showed [quoted text clipped - 16 lines] > > GR That sounds like a great plan, GR.
The most important thing is not to kid yourself about the future of this rotten illness. Mary G. has often stated here that "this is as good as it's going to get" due to the fact they don't get better from this illness, they get worse. It's sad, but true.
There are skills you will need to develop and use in dealing with her with kindness and respect. These are outlined in a book called "The 36 hour day" which is widely available and you might want to pick up a copy.
One of those skills we call "loving deception". They can't handle the truth, and it is often unkind to try to get them to do so. It is not the same as "lying" although it may at first seem that is what one is doing. It is done to protect the person from a reality they no longer can work within.
When my mother in law was living alone and no longer able to cope with the demands of living in her own home, we took her for a "weekend visit" that never ended. We took care of everything from then on. We felt terribly guilty for deceiving her in that way, but it turned out to be the very best thing we could have done for her.
Regards, Evelyn
Mary_Gordon@tvo.org - 11 Mar 2007 18:52 GMT Just a suggestion - ask that the evaluation include a proper cognitive evaluation. The testing isn't just a couple of memory questions - its more like what they put a child through looking for learning disabilities.
At the time one was done on my MIL's, she would have seemed entirely normal if you had met her in a social situation. All that we were really aware of was a some forgetfulness. However, the results were really shocking. My husband attended the testing with her, and he was floored. It was a worthwhile exercise in that we ended up with a much better picture of how impaired she was, and were shocked out of complacent denial.
Like most families, we hadn't really realized that Alzheimers is not just a disease of memory. The entire brain function is affected - so the person's language skills, fine coordination (and later gross coordination), depth perception, logic and ability to reason, emotional control, loss of sense of smell, loss of ability to recognize things and people, you name it - all are sliding, even if you can't see that from having a visit with them. Those deficits are all much scarier than a little memory loss. Its also one thing to know something intellectually - its quite another to see it graphically demonstrated.
I've often given the example of some drawings my mother in law had to copy - one was a line drawing of a house, like a child would make - which my mother in law copied as a bunch of random lines. A clock face with the 12 at the top - she was asked to put the rest of the numbers in, and she put 3,4 5, 6 etc. in a long string going straight out from the clock (i.e. she didn't realize the 12 was a 12 - she thought it was 1, 2, and she had no idea how the numbers of a clock go around the face of a clock. She couldn't do simple puzzles. She couldn't do simple arithmatic.
If a person had memory loss for recent events but was intact in other ways, it would not be so difficult to maintain them in their home, since they might still be sensible about basic domestic stuff - i.e. knowing that when you feel hungry, its time to eat - or that when clothing looks or smell dirty, its time to wash it.
One of the most debilitating deficits for running your own life relates to the loss of understanding of sequences - whether that be numerical, or sequences of actions required to accomplish a task.
We often use the example of bathing to explain what this means. Think about taking a bath. First you need to know you need a bath (no small feat when you don't remember last time you took one, can't smell yourself or SEE the dirt on you, let alone reason that one might be required). But then...you need to know what you need to take a bath - to get a towel and a washcloth, the soap, the shampoo. You need to know to put the stopper in the tub, how to turn on the taps and adjust the temperature, when to turn the water off. You need to know to take your clothing off, and climb in, and how to wash yourself and your hair - when to get out, how to let the water out, how to dry yourself. There are just so many component tasks and skills involved and such a specific order they must be done in - no wonder someone with brain damage avoids the whole thing. And then there are the sensory issues - many people with AD are exquisitely sensitive to temperature and sensation, so the feel of nakedness, or water on their skin can be upsetting.
Its not just about forgetting to do things! With intact brains, we take for granted the order we do tasks in on the domestic scene. Consider how complex cooking a meal is when you look at it from the point of view of a series of tasks done in a specific order. If they live with someone, people with AD can often participate in these things with prompts (i.e. you stand by them and tell them what to do next, and they can do each separate task).
Mary G.
Dennis P. Harris - 12 Mar 2007 08:50 GMT > So we are going to take the suggestion to have her evaluated by someone > who works with Alzheimer's patients, and determine what level of care > would be best for her now. And then see what we can do from there. what she needs to have is a FULL PHYSICAL EXAM as well as a full neuro-psychiatric workup. her primary care doc should be willing to refer her on your request, or you need to change her doctor.
medicare will pay for the exams, which should include any scans necessary (mri or cat scan, if the patient can stand them, many folks with dementias cannot) as well as a full cognitive skills evaluation (not just a few current events questions) and psychiatric evaluation.
this should include common tests like repetetive numeric calculation, clock drawing exercises, copying of simple pictures, recall of words the subject was asked to remember 5 minutes ago, and reading comprehension ("look at this card and do what the words tell you to do"), as well as logic questions. most evaluators would use a test called the MMRI (just google MMRI for descriptions).
as other have said, you need to get several copies of mace and rabin's "the 36 hour day" and you and your siblings need to read it right away.
her "good day" for a planned visit is not uncommon, but i'll bet that if you dropped by 2 or 3 hours after everyone else left to pick up something you "accidentally" left behind, you'd find that she expended so much energy keeping it together for the visit that she'd be totally dazed and exhausted, and probably incoherent. it's called "going to the doctor syndrome", where the impaired person is at their best for the doctor visit or other event, then totally dissembles once it's over.
as an example, i once had my mom's doc call for a MMRI early in the morning, with only an hour's notice to my mother. she did very well on the test, but an hour later, on our way to visit her primary care doc, she couldn't remember what the next appointment was, or that she had just taken the test.
for your sake, i hope that she has already signed durable power of attorney for business affairs and health care to one of you so that you can make decisions for her, because she is no longer capable of making decisions for herself, and is probably already not safe at home alone, as mary and eleanor have already pointed out.
if none of you have the authority to make medical decisons for her, contact your local alzheimers association for referral to an elder care attorney for help, or contact your state adult protective services office. the laws about things like conservatorships and guardianships vary from one jurisdiction to another, and you really need to contact someone with elder care law experience in your mother's jurisdiction.
remember that your generation now has to be in charge, and she is no longer capable of making decisions. it's tough to become a parent to your parent, but most of us have had to do it. just remember that any emotion, fury, or lack of understanding is not due to *you*, it's the disease. do what you can to keep her safe and healthy, and don't feel guilty, no matter what you do.
welcome to the club no one wants to join. feel free to come back for more info, opinions, and advice.
Stephen - 11 Mar 2007 14:09 GMT >Steve, with all due respect, your situation is very different, in that >your father is alive, and able to care (albeit with supports) for your >mother. I don't disagree with you. I was simply reporting what my experience was. If my Mom was living alone, I'd have made sure whe was in a facility long ago. Although I am pleased with the service provided by Visiting Angels, I know that they are *not* nursing/medical care and a person suffering from even mild dementia and living alone is not a good thing. -steve
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