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When a person transitions into the late stages is it apparent or does that person end up in the hospital (due to fall or illness) and is then diagnosed?
Looking for any clue is to where my mother falls on the spectrum.
Susiemen’s response is one of the most stunning and heart-rending responses I’ve ever read on this site. We should all take a screenshot of it and print it out.
We all get mired down in the dailies of caregiving, whether it’s for a parent or a spouse. I know for myself, I have become bitter and nasty and just getting out of bed to face the day gives me a stomachache. But truth be told, when I hear my husband cough or hear his hospital bed motor in the morning, I breathe a sigh of relief.
Susiemen, I am in awe of you. You are a very special person. If I ever need a caregiver, I hope they graduate from your caregiver school.
Thank you for your kind words! I had a major advantage, I believe, because I am a retired pediatrician who, after 23 years of practice taking care of mainly Medicaid Patients with many problems to help them solve, I decided to retire following a severe heart attack my mother had at 92. She'd had a single knee surgery at age 88 and I then took her on a cruise to Alaska the following year, pushing her all over Butchart Gardens in Victoria, B.C.--now THAT was a real test of endurance! We went the year following my retirement to her first attendance of a Miami University in Oxford, OH reunion, and she was obviously the oldest person there, and received many adulates. Oh, we went everywhere--toured the bath houses National Monument in Hot Springs, AR, I drove her out to the balloon Fiesta in Albuquerque, took her to Hilton Head so she could feel one last time the sand under her feet, even to the opening ceremony of the beautiful local Buddhist Temple, where we were interviewed by a news reporter, who thought we didn't look like regular Buddhists and learned that we were doing Mom's "bucket list", ending up on the front page of the paper the next day! When we moved to another city to greet our first grandchild, we took Mom along at age 100 and sought out a nice assisted living just 4 miles away, so that we could visit often during the week. She'd had many health problems starting at age 97--pneumonia, then a bout of pulmonary emboli, and at her 100th birthday said she didn't really want to see 101. Well...that all changed when she heard that our Elly was going to be a mother. She said, "Well I've got to hang around long enough to see what kind of a baby Elly will have." And what fun that little guy provided her--he pushed her around in her wheelchair when he was only 2 and a half, singing with her, etc. and telling everyone "Great grandma and I were both born in '08!" They were 100 years, 5 months and 21 days apart. When she turned 101, the assisted place had never had anyone that old, so they went all out, arranging for her to get a "proclamation" from the city council to which we all went on the eve of their 40th anniversary of incorporation. She came sailing in on her Hoveround, waving like the Queen, and received all sorts of attention from the attendees who came and wanted to pat her, shake her hand, kiss her cheek, congratulate her, etc. The home gave her a tiara to wear, and she wore it until the day she lay down in preparation for her eternal rest. So, that's my "caregiver school" in a nutshell! In the meantime, my husband was succumbing to the vicissitudes of Alzheimer's, cerebral bleeds and hydrocephalus of which we became aware 12 years before he passed on. He did really pretty well for several years in spite of the diagnoses, and was still riding his bike here 4 1/2 miles down to see Mom every couple of days while I took care of everything else--finances, house, yard, grocery, etc. which I had done most of our lives, as my husband, also a physician, was very active in the peace and social justice movement as well as on national board of physicians for social responsibility in trying to rid the world of nuclear weapons. So--yeah!...I was pretty busy my whole life, and I think that's why it wasn't so hard to do the caretaking after I had retired. I can say, though, that trying to lead 3 people's lives all at once is a real challenge, and since they've passed (6 years and 2 years ago) I've just been puttering around doing what I want, re-reading all my Nancy Drew books (!), working puzzles, decorating, designing house plans just for fun, making jewelry, decorative couch pillows, etc. but still keeping up with all the issues we were involved with. I do understand your sense of just sometimes wishing it would all come to an end, but you know, once they were gone, I'd suddenly want to tell them something or show them something fun that I'd read or seen, and suddenly realize that they are gone and not coming back..
Hi TornadoJane, I am writing as a patient with Dementia/Prob early onset ALZ. I am now 59, my DW 51. I was diagnosed while we were in the middle of doing retirement/estate planning. My focus was doing all possible to not bankrupt my DW and college age children and we also have one in elementary school. We created a Trust and put all of our money and property in to the Trust that is only in my DW's name. We are only a few weeks from the 2nd Anniv of the Trust. I insisted a provision be put in to the Trust where it says that my DW, has made no provisions for my husband....... Currently we all have HC through my DW's employer. Yes, you have to have complete trust in your spouse. My DW is perfect. My DW has my Medical Directive, DPOA, FPOA, and is my Medical Proxy. She knows I do not want her visiting every day, week or month, I want her to be able to distance herself from things, but be able to speak for me when I can't give answers for myself. I have made it clear that I don't want my family feeling tethered to me and that I want them to go about attending to their families when I am institutionalized. I include my DW with instructions to go about establishing a new life for herself and have told the kids not to give her a hard time about it. I won't know any differently. I am pretty sure that I am moving in to mid stage. I find it much more difficult to make decisions regarding money, decisions on day to day activities of life regarding, how our college age kids share transportation, what consequences are appropriate in different circumstances. I have decided, I won't put up with insurance company appeals for treatment, or answers to cost of medical care going unanswered. I won't give HC companies a blank check answer of, we don't know how much this MRI will cost you OOP, before doing test. I implore all reading to have these hard discussion with your family, let them know what you want, while you are still of sound enough mind to make decisions.
Good question! I struggle with trying to look ahead, not just from a physical/mental/emotional standpoint, but from a financial standpoint. My mom is at home right now, with paid helpers and me. Very expensive! I think of John McCain's mother - age 106. If my mom lives that long, I will be 73!! I guess there is some humor, but seriously, we all want to do the right thing by our loved ones without putting our own lives on hold. And it is so hard not to put your life on hold when you know that whatever decisions you make personally, you will still be tethered to the leash that is the responsibility for the person with dementia.
i HATE "lists" because everybody's Alzheimer's is different. a good indication is when they start wandering out of the house..that's when they progress to end stages. It only gets worse because they get weaker and weaker. Try to manage without narcotics or psychotropics..if you can. The risk for falling increases with drugs. I take my mom out for walks and frequently. I remember when she went nuts in the afternoon I took her for a walk and she went back home all calm. Now she's declined I can barely walk her at all but I keep on trying. Now I can only walk her with a specialized walker that cost me $650 (dolomite alpha rollator) but I had to remove the brakes since she kept on pressing them. No Medicare will not pay for it and yes it was worth buying.
My husband had always been an outdoors person--climbed many mountains in the Alps, took diabetic kids on backpacking trips to show them that they could do everything in spite of their condition, etc. so when he became unable to walk, we would put him in our wheelchair and go out for long walks through the neighborhood of his assisted living place. He loved the fresh air, flowers, leaf color changes, and would direct me by pointing to where he'd want me to take him next. My daughter and our grandson would join--he as a little 5 year old on his scooter was a joy for my husband to watch, and I do believe that he experienced vicariously through watching. We continued this until just a few weeks before his final turn toward his mortality. It was a difficult chore for me, due to bad knees and trying to push him up and down the hills in our area, but I had done it for years for my mother who lived to 104, and then just a year later had to commence it for my husband for another 3 years until his death. For me, it never felt like a chore, as I was always made happy when I could see pleasure in their faces and demeanor. No matter how long it takes, hang in there--this duty, too, will pass some day, and we can find solace in knowing that we made a difference even in the lives of others who unknowingly accepted our help without showing gratitude anymore. Their gratitude becomes hidden by the disease, but I firmly believe that on some subconscious level they still sense comfort from others and are calmed and relaxed by it.
Gremlin, I was given advice on how to lessen sundowners. Close all the blinds and put all the lights in the house on and put on the TV. This works with my husband. Hope this helps.
That is a good list but remember that end stage doesn't necessarily mean end of life, my mom has lived with 14 of those symptoms for several years now.
The following is the list of symptoms you generally find in a loved one who is in the late stage. All the symptoms may not be present for all the individuals. But once you have a handful of them present, you can be pretty sure that your LO is at end stage.
Double incontinence or urine incontinence and difficulty in general Inability to walk or even stand up by themselves Inability to feed themselves General loss of control of movements Difficulty sitting up straight in wheelchair Inability to speak in complete, intelligible sentences but still speaking gibberish Lengthy intent staring at individuals, zoning out Slipping into and out of sleep Difficulty swallowing, liquids 'pool' in mouth etc. Eating everything in sight Agitation Weakness Declining comprehension Not recognising family members Needs to be washed and dressed Doesn't react anymore to loud noises or quarrels Mute Still smiles Fully dependent Mostly responsive to visual queues rather than sound queues No initiative Rigid Can not express feelings Paranoia Hallucinations
I always disliked the "stages" My husband stopped talking very early on in the disease process but he was feeding himself far past the point that was given on the charts. He was also walking longer despite the fact that he had broken a hip fairly early on and had gone through rehab. And he became incontinent largely due to the poor rehab facility he was in. Look at the charts giving the 7 stages. But use them only as a guide. The progress may be faster or slower with some things. Remember each person is an individual. A trip to the hospital is not the way to get a "diagnosis" as to the stage the person is at. Consulting with a Neurologist or a Psychoneurologist that can professionally assess the persons abilities and the progress (I should say the decline) that is being made is the better way to figure out where the person is.
I learned to appreciate what my Husband could still do, I marveled at the little things that in my mind he should still not be doing. Some of the time it made me laugh because all of a sudden he would do something that I figured he could not do. I had some paper and a pen on the table I was making a shopping list (yes I still hand write a list) and when I got back to the table he had taken the paper and written letters and a few actual words on it. Mind blown!! So unless it is VERY important for you do not stress much about a "stage" Focus on what she can and can not do, work with the abilities. Watch for declines. My Husband had several incidents where I had to call for a "lift assist",they were not falls but he would slide out of a chair or he tried to sit in a different chair that he could not get out of. I marked each one on a chart on the refrigerator so I could tell Hospice. Looking back each and every one of these was the beginning of another decline. So look and pay attention to little incidents that may be a clue to a decline. It also helps to know the type of dementia Alzheimer's is usually a slow but steady decline, it may accelerate later though. Vascular dementia there are sharp declines that come on quickly. I think my Husband had both as his declines were slow and steady but each of the incidents I mentioned was an indication of a sharper decline. I think this is when he may have had a vascular incident occur. I do not know enough about the other types of dementia to detail their types of decline. I do know that LBD is tricky to manage and treat. So finding out the type can be important to monitor the types of decline but is it so important to put someone through all the testing..I think not as for the most part the outcome is the same.
I agree, Grandma1954, my mom was diagnosed back in 2006 and for going on four years now has exhibited all of the final stage symptoms. Other wise, healthy as a horse. My sister, brother and myself are tethered to her daily probably because her life had already been such a difficult one, losing our dad to Vietnam War, raising us when we were so very small and pinching pennies to make ends meet all her life.
So, every dementia/ ALZ case is different and the Guide for stages are just that. I truly believe that when a person is ready or when God wills it, they will die. Do what is best for you and your family.
When I visit my mom I see so many forgotten souls but I also see others who have family visit weekly. Do what makes you feel is best for everyone. God bless you!
hi my mom 1 time went into a hospital for problems& 1 problem was she was low on sodium ..then they put her in a skilled nursing home to rehab..well she did not eat much of there food i knew that so when she got home all she did was laid in bed ..so i remembered she was low on her self for not eating & including sodium .so i took cinnamon vitamin pills capsule form .i took the cinnamon out & put table salt in had her take it like a pill ..then trying to get her to eat & vitamin pills & sodium pills she got back to normal & then around 6-20 -17 she went to her doc then started to lay in bed again so she slowly went down hill till 4-9-18 passed ..she lived a yr longer cause of what i did ..everyone is different but i do not know if they are at that point ..
Hi Gremlin I use 7 clinical stages of Alzheimer’s. It at least gives examples and mean duration. I know everyone is different but it helps me to read and try to understand what’s going on. I have prayed for the burden of making the decision to place my Mom be taken off my shoulders. Both Drs said to keep her with me. She needs assistance with all ADLs and is falling more frequently sometimes doesn’t recognize me as her daughter sundowning getting worse but already on enough meds to knock out an elephant ( geri psych believes she’s been bipolar her whole life I agree) Sorry to ramble my heart goes out to you
I feel for you. Unpredictability is a huge stress factor in almost any situation. In a situation you're helpless to change, all the more so.
I expect you've already been given this? - but in case not, try https://www.alz.org/alzheimers-dementia/stages
I am very much afraid it won't get you a lot further forward for practical purposes, though. You might narrow it down to the decade, perhaps, but which year is anyone's guess, really.
So, I wonder if you might find it more of a relief - ironically - to operate on the assumption that you will be dealing with this indefinitely. You're there for the duration. It'll be over when it's over. That way, depressing as it might sound as a platform, you will be more focused on finding support for the here and now that helps it work as well as possible; rather than putting your whole life in limbo until some nebulous release date.
No support at all. The brother and sister that would help live in other states. The brother and sister that live here won't lift a finger the help in any way (the first one with their hands out when my parents pass) and a father that pretends this isn't happening.
So Gremlin, when was the last time she was assessed by a physician or a geriatric psychiatrist? Or a neurologist?
My mom's PCP was saying she was " fine" well into what specialists said was " Mild Cognitive Decline". And were willing to say she could no longer live alone.
Gremlin; Medicare does NOT cover the cost of long term care. Medicaid does.
Medicaid is a program for folks with very limited income and assets; have you checked into your state's income and asset limits?
Has she been seen by a geriatric psychiatrist for the behavioral issues? She shouldn't be screaming for hours; if that happens again, I'd call 911 and get admitted; they might be able to send her to a psychiatric unit to get meds sorted out for her.
I meant Medicaid. And the yelling and screaming is due to sundowning. She's not in pain. She wants constant attention and will not stop until she gets it.
I agree that the ALZ stages are more of a guideline and don't necessarily apply to other kinds of dementia, my mother does not have Alzheimer's but most likely Vascular Dementia and although she obviously has cognitive deficits her mind is more like a puzzle with pieces missing, she is still very lucid in some areas but not in others. I think that no matter which type of dementia someone has late stage is when the physical effects become more profound and debilitating - complete loss of continence, difficulty eating, inability to perform all or most ADLs and finally progressing to bed/wheelchair bound. Some people who come to the forum characterize a loved one as having advanced dementia and will tell us about someone who may be terribly confused but still walking, talking, eating and mostly continent and I think to myself "you're nowhere near end stage yet".
The physical effects are starting to show. She's having a harder time moving her feet. Her head keep dropping as she walk until she's looking at the floor. She constantly thinks she has to pee. She is eating less even though she ate very little to begin with. She calls me by the names of other family members and accuses me of doing the things that she has done.
It would be nice to occasionally have a definitive answer on something . . . hell, a definitive answer on anything.
Yes ALZ is categorized as a Dementia but its effects the brain differently than other Dementias. With my Mom her anxiety level went up. She couldn't stay in one place. Had to be constantly moving in her wheelchair. Then the humming started. It got worse by the day to where she was so loud she was disturbing the other residents. She was put on anxiety meds which helped but then she just sat. Within a week or so she shut her eyes. No longer wanted to get out of bed. Was aware of people talking to her but just wouldn't open her eyes. She lost her ability to swallow. We called in Hospice. She passed 6 days later.
Hi Gremlin, I can only speak of my experiences with my Mom who died of Alzheimers. At the beginning of her illness she was mostly OK, able to feed herself, go to the bathroom on her own etc. What she could no longer do: she couldn't play cards or any game that required counting or that had rules more complex than GO FISH. She had short term memory issues, loss of time and calendar abilities (not knowing the day/date/year) asking if it was day or evening when told the time and so forth. She was under the care of one of the best memory disorder neurologists (Dr. Zimmerman) from the very beginning. He really didn't use the stages of Alz. as he felt there were too many times a person could have part of one stage and also part of another.
As she progressed she lost the ability to toilet herself, she became aggressive, took to hiding things and then blaming us (my dad and I) of stealing from her. She began to wander, going home (a whole other story), sundowning, falling, personal hygiene went right out of the window, trouble walking, falling etc.
Then came the beginning of the end stage....She was completely incontinent, refusing meds, unable to walk, when she could talk it was in her mother tongue (german) not american, she no longer recognized us, still had infrequent bouts of aggression (don't let them get a hold of anything sharp, like knives we had a near miss when my mom's broken brain caused her to try and stab my Dad) and Hospice started to come (Thank God!) We were given a hospital bed that we put in the family room, she had a catheter put in, she was totally bed-ridden and for the most part totally non-verbal, unable to move on her own, except her arms and hands. Now she just 'was'....She could do nothing! We talked with her, read to her, watched tv, feed her, bathed her and slowly watched her die. We kept her home the entire time. She started to refuse to eat, sometimes she would drink, Hospice was there with us the entire end stage and assured us that this was simply part of the dying process and that to try and force feed her would be very painful and harmful to her. And then late one January night, with my Dad and I, at her bedstead holding her hands she died. Again speaking just for myself....it was a relief that this horrible journey had finally ended.
Hi Lindaz, I'm just wondering how long you cared for her after hospice came on board and how long she lasted after reaching the point where she just "was". I know everyone is different but I think my mom is fast approaching EOL.
I'm no expert, but, I'll share what I have seen. I just read as much as I could as my LO was progressing. Sites like this help a lot, as doctors don't usually talk about stages.
You can look at the chart that list characteristics of each stage for Alzheimers, though, it's not exact. People tend to have traits from different stages. For that reason, the chart can be confusing and perhaps not accurate for your particular case. I've read that you go to the stage where the person has at least one trait and that is supposed to be their stage, but, I'm not sure there is any scientific proof of that. However, if she has Vascular dementia or something like Parkinsons, the Stage Chart for Alzheimers might not apply. However, I have read and noticed that once the patient reaches severe dementia, their characteristics are pretty much the same, regardless of the cause of the dementia.
My LO became incontinent and was wheelchair bound quite early after her diagnosis. She even had a positive Babinski reflex early on in her neurologist visit, which surprised me, because I knew what it meant and I could see the doctor was surprised too. It is normally a late stage symptom. He said then she had severe dementia, but, she was still able to talk, feed herself, knew family members, had some long term memory, etc.
She has Vascular dementia and her balance was horrible. She had numerous falls due to poor balance. After multiple fractures from falling, (she fell even with a walker), she ended up in a wheelchair and it was the only thing that helped eliminate the falls.
In year two her geriatric psychiatrist told me that she had Profound dementia. I had never heard that term before and looked it up. Still, at this point, she was able to get around in her wheelchair on her own, carry short conversation and recognized close family members, though, not recall their names or how she knew them.
She did pretty well after that, but, after about 3 years, she began to lose speech, ability to feed herself and to recognize her close family members. She also lost weight, despite eating. These things to me indicated late stage. She had some medical issues, but, not a lot.
Year 4, we are meeting with hospice nurse today. She has a fever, is taking antibiotics, doesn't really speak and I'm not sure how much she understands about things around her.
I have read about some people with Alzheimers who progress quite slowly and are able to walk, talk, write letters, use the phone, recognize family members for many years. Even as much as 15 years. So, what is causing the dementia does have a significant impact on the time progression, based on what I have seen. I'd discuss it with her doctor and see if they could offer you more information.
Unfortunately, dementia is not the sort of disease that easily fits into nice little categories. My mom, like gladimhere’s was also very unpredictable. We could start out a visit having a perfectly normal conversation and then, suddenly, she’d tell me men were coming through a secret panel in her wardrobe closet.
If a person falls or or becomes ill and winds up in the hospital, they are not necessarily tested for dementia. In my mom’s case, she was hospitalized for a serious UTI, but the nurses suspected it was more than that and she was evaluated. I was told they felt she could no longer live on her own.
Like Barb suggests, take care of yourself. If your mom needs to be in a facility, it’s ok to put her in one.
Has she had a recent behavioral change? Has she seen a doctor? Checked for UTI?
Stages while they are listed on different dementia websites are only guidelines. She could be all over the map, which my mom was up until near the time of death.
Gremlin, do you know what kind dementia your mother has? It matters. Different forms of dementia progress differently.
What sort of doctor is following your mom's dementia?
I recall one if your posts in which you sounded quite burned out. Are you preparing to place your mom in a care facility so that you don't bankrupt yourself?
Working on getting her into a nursing home but she needs to have Medicare to cover the cost. She has been diagnosed with dementia by her doctor (something I knew months ago) but the effects of dementia have become worse over the last couple of weeks. Six and seven hour marathon talking, yelling and screaming sessions at night. She will sleep sitting in her recliner but will not sleep in bed. She can't stand or walk on her own due to nerve damage. She has had trouble swallowing for over a year but that could have something to do with her surgery. She has never had much of a appetite so I can't judge from that at the moment. She does not currently have a UTI but has had one in the past.
Unless she gets cancer or kidney failure or has a heart attack I know that dementia will kill her. I don't need to know the date and time of her death but . . . if I could know the year . . . it would be so much easier to prepare for whats coming.
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Have you asked her doctor to script home health care?
Have you contacted your local Area Agency on Aging for a needs assessment and advice on in-home care and/or placement?
We all get mired down in the dailies of caregiving, whether it’s for a parent or a spouse. I know for myself, I have become bitter and nasty and just getting out of bed to face the day gives me a stomachache. But truth be told, when I hear my husband cough or hear his hospital bed motor in the morning, I breathe a sigh of relief.
Susiemen, I am in awe of you. You are a very special person. If I ever need a caregiver, I hope they graduate from your caregiver school.
I am writing as a patient with Dementia/Prob early onset ALZ. I am now 59, my DW 51. I was diagnosed while we were in the middle of doing retirement/estate planning. My focus was doing all possible to not bankrupt my DW and college age children and we also have one in elementary school. We created a Trust and put all of our money and property in to the Trust that is only in my DW's name. We are only a few weeks from the 2nd Anniv of the Trust.
I insisted a provision be put in to the Trust where it says that my DW, has made no provisions for my husband....... Currently we all have HC through my DW's employer. Yes, you have to have complete trust in your spouse. My DW is perfect. My DW has my Medical Directive, DPOA, FPOA, and is my Medical Proxy. She knows I do not want her visiting every day, week or month, I want her to be able to distance herself from things, but be able to speak for me when I can't give answers for myself.
I have made it clear that I don't want my family feeling tethered to me and that I want them to go about attending to their families when I am institutionalized. I include my DW with instructions to go about establishing a new life for herself and have told the kids not to give her a hard time about it. I won't know any differently. I am pretty sure that I am moving in to mid stage. I find it much more difficult to make decisions regarding money, decisions on day to day activities of life regarding, how our college age kids share transportation, what consequences are appropriate in different circumstances.
I have decided, I won't put up with insurance company appeals for treatment, or answers to cost of medical care going unanswered. I won't give HC companies a blank check answer of, we don't know how much this MRI will cost you OOP, before doing test. I implore all reading to have these hard discussion with your family, let them know what you want, while you are still of sound enough mind to make decisions.
Double incontinence or urine incontinence and difficulty in general
Inability to walk or even stand up by themselves
Inability to feed themselves
General loss of control of movements
Difficulty sitting up straight in wheelchair
Inability to speak in complete, intelligible sentences but still speaking gibberish
Lengthy intent staring at individuals, zoning out
Slipping into and out of sleep
Difficulty swallowing, liquids 'pool' in mouth etc.
Eating everything in sight
Agitation
Weakness
Declining comprehension
Not recognising family members
Needs to be washed and dressed
Doesn't react anymore to loud noises or quarrels
Mute
Still smiles
Fully dependent
Mostly responsive to visual queues rather than sound queues
No initiative
Rigid
Can not express feelings
Paranoia
Hallucinations
Still alive. It's hard on me but still alive after 2 years of the above.
My husband stopped talking very early on in the disease process but he was feeding himself far past the point that was given on the charts. He was also walking longer despite the fact that he had broken a hip fairly early on and had gone through rehab. And he became incontinent largely due to the poor rehab facility he was in.
Look at the charts giving the 7 stages. But use them only as a guide.
The progress may be faster or slower with some things. Remember each person is an individual.
A trip to the hospital is not the way to get a "diagnosis" as to the stage the person is at. Consulting with a Neurologist or a Psychoneurologist that can professionally assess the persons abilities and the progress (I should say the decline) that is being made is the better way to figure out where the person is.
I learned to appreciate what my Husband could still do, I marveled at the little things that in my mind he should still not be doing. Some of the time it made me laugh because all of a sudden he would do something that I figured he could not do. I had some paper and a pen on the table I was making a shopping list (yes I still hand write a list) and when I got back to the table he had taken the paper and written letters and a few actual words on it. Mind blown!!
So unless it is VERY important for you do not stress much about a "stage" Focus on what she can and can not do, work with the abilities. Watch for declines. My Husband had several incidents where I had to call for a "lift assist",they were not falls but he would slide out of a chair or he tried to sit in a different chair that he could not get out of. I marked each one on a chart on the refrigerator so I could tell Hospice. Looking back each and every one of these was the beginning of another decline. So look and pay attention to little incidents that may be a clue to a decline.
It also helps to know the type of dementia Alzheimer's is usually a slow but steady decline, it may accelerate later though. Vascular dementia there are sharp declines that come on quickly. I think my Husband had both as his declines were slow and steady but each of the incidents I mentioned was an indication of a sharper decline. I think this is when he may have had a vascular incident occur. I do not know enough about the other types of dementia to detail their types of decline. I do know that LBD is tricky to manage and treat.
So finding out the type can be important to monitor the types of decline but is it so important to put someone through all the testing..I think not as for the most part the outcome is the same.
So, every dementia/ ALZ case is different and the Guide for stages are just that. I truly believe that when a person is ready or when God wills it, they will die. Do what is best for you and your family.
When I visit my mom I see so many forgotten souls but I also see others who have family visit weekly. Do what makes you feel is best for everyone. God bless you!
I feel for you. Unpredictability is a huge stress factor in almost any situation. In a situation you're helpless to change, all the more so.
I expect you've already been given this? - but in case not, try https://www.alz.org/alzheimers-dementia/stages
I am very much afraid it won't get you a lot further forward for practical purposes, though. You might narrow it down to the decade, perhaps, but which year is anyone's guess, really.
So, I wonder if you might find it more of a relief - ironically - to operate on the assumption that you will be dealing with this indefinitely. You're there for the duration. It'll be over when it's over. That way, depressing as it might sound as a platform, you will be more focused on finding support for the here and now that helps it work as well as possible; rather than putting your whole life in limbo until some nebulous release date.
What do you currently have in the way of support?
My mom's PCP was saying she was " fine" well into what specialists said was " Mild Cognitive Decline". And were willing to say she could no longer live alone.
Medicaid is a program for folks with very limited income and assets; have you checked into your state's income and asset limits?
Has she been seen by a geriatric psychiatrist for the behavioral issues? She shouldn't be screaming for hours; if that happens again, I'd call 911 and get admitted; they might be able to send her to a psychiatric unit to get meds sorted out for her.
It would be nice to occasionally have a definitive answer on something . . . hell, a definitive answer on anything.
As she progressed she lost the ability to toilet herself, she became aggressive, took to hiding things and then blaming us (my dad and I) of stealing from her. She began to wander, going home (a whole other story), sundowning, falling, personal hygiene went right out of the window, trouble walking, falling etc.
Then came the beginning of the end stage....She was completely incontinent, refusing meds, unable to walk, when she could talk it was in her mother tongue (german) not american, she no longer recognized us, still had infrequent bouts of aggression (don't let them get a hold of anything sharp, like knives we had a near miss when my mom's broken brain caused her to try and stab my Dad) and Hospice started to come (Thank God!) We were given a hospital bed that we put in the family room, she had a catheter put in, she was totally bed-ridden and for the most part totally non-verbal, unable to move on her own, except her arms and hands. Now she just 'was'....She could do nothing! We talked with her, read to her, watched tv, feed her, bathed her and slowly watched her die. We kept her home the entire time. She started to refuse to eat, sometimes she would drink, Hospice was there with us the entire end stage and assured us that this was simply part of the dying process and that to try and force feed her would be very painful and harmful to her. And then late one January night, with my Dad and I, at her bedstead holding her hands she died. Again speaking just for myself....it was a relief that this horrible journey had finally ended.
My prayers and blessings are with you! Lindaz.
You can look at the chart that list characteristics of each stage for Alzheimers, though, it's not exact. People tend to have traits from different stages. For that reason, the chart can be confusing and perhaps not accurate for your particular case. I've read that you go to the stage where the person has at least one trait and that is supposed to be their stage, but, I'm not sure there is any scientific proof of that. However, if she has Vascular dementia or something like Parkinsons, the Stage Chart for Alzheimers might not apply. However, I have read and noticed that once the patient reaches severe dementia, their characteristics are pretty much the same, regardless of the cause of the dementia.
My LO became incontinent and was wheelchair bound quite early after her diagnosis. She even had a positive Babinski reflex early on in her neurologist visit, which surprised me, because I knew what it meant and I could see the doctor was surprised too. It is normally a late stage symptom. He said then she had severe dementia, but, she was still able to talk, feed herself, knew family members, had some long term memory, etc.
She has Vascular dementia and her balance was horrible. She had numerous falls due to poor balance. After multiple fractures from falling, (she fell even with a walker), she ended up in a wheelchair and it was the only thing that helped eliminate the falls.
In year two her geriatric psychiatrist told me that she had Profound dementia. I had never heard that term before and looked it up. Still, at this point, she was able to get around in her wheelchair on her own, carry short conversation and recognized close family members, though, not recall their names or how she knew them.
She did pretty well after that, but, after about 3 years, she began to lose speech, ability to feed herself and to recognize her close family members. She also lost weight, despite eating. These things to me indicated late stage. She had some medical issues, but, not a lot.
Year 4, we are meeting with hospice nurse today. She has a fever, is taking antibiotics, doesn't really speak and I'm not sure how much she understands about things around her.
I have read about some people with Alzheimers who progress quite slowly and are able to walk, talk, write letters, use the phone, recognize family members for many years. Even as much as 15 years. So, what is causing the dementia does have a significant impact on the time progression, based on what I have seen. I'd discuss it with her doctor and see if they could offer you more information.
If a person falls or or becomes ill and winds up in the hospital, they are not necessarily tested for dementia. In my mom’s case, she was hospitalized for a serious UTI, but the nurses suspected it was more than that and she was evaluated. I was told they felt she could no longer live on her own.
Like Barb suggests, take care of yourself. If your mom needs to be in a facility, it’s ok to put her in one.
Stages while they are listed on different dementia websites are only guidelines. She could be all over the map, which my mom was up until near the time of death.
What sort of doctor is following your mom's dementia?
I recall one if your posts in which you sounded quite burned out. Are you preparing to place your mom in a care facility so that you don't bankrupt yourself?
Unless she gets cancer or kidney failure or has a heart attack I know that dementia will kill her. I don't need to know the date and time of her death but . . . if I could know the year . . . it would be so much easier to prepare for whats coming.