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Courtesy Iona Knapp
Iona Knapp, right, has been diagnosed with mild cognitive impairment, a potential precursor to Alzheimer's disease. Like 1 in 7 people with Alzheimer's or other dementias, the 65-year-old Lake Monticello, Va., woman lives alone. Her daughter, Sharon Mullen, lives 90 minutes away, in Manassas.
Iona Knapp’s father died of Alzheimer’s disease and her late mother suffered from dementia. Now, the 65-year-old Lake Monticello, Va., woman has been diagnosed herself with mild cognitive impairment, or MCI, and she fears their fate soon may be her own.
The trouble is, Knapp lives by herself, which would make her one of 5.4 million people in the U.S. living with Alzheimer’s disease and other dementias -- and one of 800,000 Americans doing it alone, according to a new report issued Thursday by the Alzheimer’s Association.
The report, “2012 Alzheimer’s Disease Facts and Figures,” estimates that one in seven people with Alzheimer's or dementia lives alone, and that up to half of those people have no identifiable caregiver. Most are older women with milder impairment.
“That’s a huge issue,” said Dr. Kenneth Langa, professor of medicine at the University of Michigan, and an expert on the economics and demographics of Alzheimer’s Disease.
As the baby boom generation ages, more and more people diagnosed with Alzheimer’s will be living alone, sometimes because they choose to do so, but also because a spouse has died, or because they have few or no children living nearby, said Langa, who wasn’t involved in the new report.
The analysis finds that Alzheimer’s costs the country about $200 billion per year in Medicare, Medicaid, and personal out-of-pocket expenses. As enormous as that cost is, it takes 15.2 million unpaid caregivers, usually family members, to keep it from rising even higher.
The personal impact on living alone with Alzheimer’s, dementia, or even MCI like Knapp’s, can be dramatic compared to living with a caregiver. Patients who live alone have a much higher risk of wandering off, suffering bad falls, missing medication and doctor appointments, and exacerbating other medical conditions like heart disease or diabetes. Ultimately that’s not only harmful to those people, but it ratchets up costs, too.
As Knapp herself discovered when she served as an unpaid caregiver to her mother, living alone has a host of practical costs and dangers.
When she accompanied her mother to the bank one day, “the teller said, ‘Your mother is way overdrawn. She has no money,’” Knapp recalled. “I looked back over the past two years of records, and found my mother had bankrupted herself.”
Now, she said, “I imagine my own future. I meet with my attorney on Friday. I want to talk to him about all kinds of things I can put in place so my older daughter can step in and take over financially.”
Such advanced planning is critical for anybody with Alzheimer’s, but especially for those who live alone, said Angela Geiger, chief strategy officer for the Alzheimer’s Association.
Legal and logistical considerations like advanced directives, power of attorney designations, and answers about who will be part of the care team must be addressed. None of these decisions is pleasant, Geiger explained, but they must be addressed.
“You really want to say, ‘Here are the two or three triggers for me. I’d like to go to assisted living as soon as possible,’ or, ‘Do I want to stay in my house as long as possible?' 'Who pays my bills?’”
While Knapp wrestles with those decisions, she’s trying to adapt so she can continue to live by herself, independently, for as long as possible. But it’s a challenge. She writes reminders on a white board. She programs appointments into her smart phone.
Such tactics aren’t foolproof, though: This week, she missed a doctor’s appointment.
Knapp is considering the purchase of an alarm button she can wear to alert emergency services in case she finds herself injured or lost. She’s also thinking of selling her house, and moving into senior housing close to her daughter, Sharon Mullen, whose family lives in Manassas, Va. Transportation will be available there, she hopes, because she’s already growing worried about her own driving. “There are times now, when I’ll be, like, ‘Where am I going?’”
The Alzheimer’s Association has created an online social network called ALZ Connected, in an effort to provide support, especially for those who find it tough to get out for in-person group support meetings.
According to Langa, barring some miracle of science -- and the science of Alzheimer’s and dementia has been frustrating so far -- the population of Alzheimer’s and dementia sufferers is going to grow significantly over the next decade. And because of America’s changing demographics, more and more of those people will be living alone.
“To me that is one of the key issues going forward, from a public policy standpoint,” he said. “What will the care-giving resources be?”
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My siblings and I learned the hard way that you can't assume someone with mild dementia can live alone. One sibling lived closed by, but was not able to see our parent on a regular basis. I live some distance away and was able to visit at least monthly. Between all of us, our parent got phone calls 3-4 times a week. But, we didn't know how vulnerable our parent was and how quickly a stranger could step in and take advantage. We all knew there was something wrong, but an evaluation by a neurologist resulted in a diagnosis of depression. Unfortunately, not even close. As it turns out, the diagnosis should have been frontal lobe dementia and the symptoms we reported to the "neurologist" should have been sufficient for him/her to look further than the 2 hr "observation" he did. Like I said - we learned the hard way and I encourage all adult children to not think that Mom/Dad will be OK, in particular if what they are having is more than a little forgetfulness. If they tell you events that happen but the event sounds a little out there, it's likely that they are having delusions and that is a major hallmark of things being more than mild dementia. Fortunately, the monetary damage done by the stranger who took advantage of our parent wasn't too bad. But, emotionally, it took a toll on me and my siblings. And, forced us to take our parent from the family home to live with one of us.
Your story sounds almost exactly like what my family is going through right now. My father had a roomate rack up $60,000 in credit card bills while he was in the hospital for 2 months last year. Dad was so out of it he shared is SSN# and made it easy for the con artist. He still hasn't officially been diagnosed with anything, but we know he has some form of dementia. He's now in the hospital after a fall that shattered his leg and caused him to spend 8 hours stuck on the floor, alone. He refuses/can't recognize that he won't be able to live alone anymore and now adult protective services has to step in to try to place him somewhere because none of us kids have room for him. It's hearbreaking to have to watch someone at 56 deteriorating this quickly.
That had to be a hard survey to conduct. "Do you live alone"......."I don't remember"
Adult protective services is stepping in because none of his kids has room for him? Seriously? Wow.
the good news is that 3 out of 4 think they live with other people, so they are not lonely.
Shellie, Often families can not care for a dementia patient. My mil was a wanderer who had to be watched 24/7. Nobody could do it. She was taken to the hospital and then declared incompetent to go home. It is easy to judge when it is not your life. Seriously.
Its not surprising I would say it reflects the 1 in 7 of American adults who live alone perfectly
Meg, my next door neighbor's wife has dementia and is also a wanderer. He's retired luckily but he's in his mid-late 70's. He had to hire people to take care of his lawn, do his shopping, etc. so he could be home with his wife. That's not only dedication, but extremely tough on one person. Good luck to you.
And if you have a family member with either Alzheimers or dementia, KEEP IN TOUCH REGULARLY!!!! They need to know you are there.
Meg, I concur. People should not be judgmental of how families handle a family member with dementia until they have done it. Even then, not all situations are the same. Fortunately, my mother realized her limitations and got herself into assisted living. However, she insisted this be almost 400 miles away from me, her only child and relative. For a time, as her dementia progressed, I was spending a week a month with her until I was finally able to bring her into geographic proximity last year. There is still no way I could care for her 24/7 and maintain my own employment, family life or health. She is in the memory care unit of an assisted living facility near me. I see her almost daily, but am grateful she has dedicated caregivers tending her when I am not around.
The trouble is, Knapp lives by herself, which would make her one of 5.4 million people in the U.S. living with Alzheimer’s disease and other dementias -- and one of 800,000 Americans doing it alone
I am NOT planning to live in this country when I finally get too old to need help. I will move to a country where people care...Somewhe in Central America...This is a selfish, self-centered @!$%#ry focused in collecting things....
I am a case manager and work for my self. My primary focus is Alzheimer's. I have a client who lives by herself and was diagnosed 2 years ago. Between her family and myself we are making it possible for her to live in her own house as long as possible. I have 20 years working in Long-term care and the majority of the time have worked with Alzheimer's patients. There are not two case that are alike and things can change from day to day. If a person with Alzheimer's has to go to a facility I would strongly recommend special care unit as these people have the training to deal with AD>
@stoopid & gtouch,
Not funny at all.. sorry..
I'm sorry, but I strongly disagree and for personal experience. At age 51, my wife, developed early onset dementia. She has an MA in community counseling and had worked with other families, through the years, with the devastating effects of severe cognitive impairments. She contributed and collaborated on publications, just never bothered to get her doctorates. The roles were suddenly reversed. I could go on, but you're selling snake oil at this point. At a point, there is no feasible way to have people with severe cognitive impairments live alone. They don't remember to even eat, or turn lights on or control a thermostat. I've been there with my wife.
You can always load them up with Ziprexa, come back 6 hours and they haven't moved. That's what the medical establishment did with my wife. I was tired of fighting, she no longer knew me, social workers fought to have her in a "safer environment"---bottom line--she can't function and Alzheimer's patients, at mid point of the disease cannot safely live along. I could cite my wife's own research before she became the patient.
I lost my wife of 30+ years. Also, our broken healthcare system caused me to spend everything, nearly wipe out my 401K, take a mortgage on our home that was paid for. I spent everything and I'd do it again.
Let all the conservative Christian supporters of our current free-market health care
system sing their praises to
Mammon, er... I mean God. As it clearly states in theirinterpretation of the Bible, God says that in a truly righteous society, profits and
a deregulated free market economy are far more important than appropriate health care for that society's
afflicted elderly! If you see a senior citizen lying beaten & robbed by the side of the
road, you should just piss on them and call them a loser who deserved what they got.
That's the conservative Christian version of the Good Samaritan.
Steve -
Damn. You hit the nail on the head.
Sandtrich, I am sorry about your wife, but many facilities actually discourage medication. We were considering adding some meds for my Mom; and, after interviewing her caregivers, and considering their (against it) input decided not to do it. Her caregivers are among her biggest advocates for not overmedicating.
My mother was diagnosed with early onset Alzheimer's 5 years ago at the age of 58. I was only 34 years old when this came to light. For her last two years in the workplace, she struggled with her accounting position and as an accountant myself, I couldn't always understand why she kept telling me they were changing things/procedures on her. After two years misdiagnosis for depression and mood swings, she was finally diagnosed with Alzheimer's. It is a horrible disease. It has taken my mother out of the workplace at least 8 years early. It has required my father to retire two years early to take care of her. It requires me to use all my vacation time for the last 4 years to travel over 550 miles one way to help my parents. The stress on the family is getting to be too much and we believe shortly, we will have to make the tough decision of placing her in a home that will cost over $10,000 a month for care for my mother. That alone stresses the entire family out each day.
Carrie, early onset Alzheimer's is particularly tragic. And, the geographic distance makes your situation even more difficult. I am not familiar with facilities in your part of the country, but here on the West Coast a number of good care options are available for considerably less than $10,000/month. We have placement services that will refer a family to a number of possible facilities within a given price range, so some of the legwork can be done by them. Then, of course, you need to visit the possible placements once you have narrowed the field. Finally, once you have narrowed the possibilities to a small number of options I recommend several visits at different times of day so that you can evaluate the care provided by a facility. If you do not have siblings or other close relatives where your parents are, try to convince them to relocate. It will eliminate travel time and give you more quality time to spend with your folks. You are not alone with this struggle!
Carrie My prayers are with your family. Make sure you get financial and legal advice from an Attorney that specializes in Medicaid / Medical planning. The earlier the better. Planning now could help to prevent your family from basically going bankrupt from Nursing Home care costs.
Looking into Irrevocable trusts and gifts of assets. There is financial relief if you plan early. But you must do it now. Best of luck to you.
Lost my father to Alzheimer's, a long, slow, hideous process for a vital and independent man. One result is that I make an effort to play mind and memory games on a daily basis, hoping to create neural pathways that will remain active. Will this work? Who the hell knows -- but it makes me feel as if I'm doing something proactive.
One thing to those who think their older parents may just be trying to get attention by acting helpless: one symptom of Alzheimer's is the inability to remember how to do simple things -- fasten a seatbelt, dry a dish. Have a little patience and keep an eye out for further symptoms -- and insist the doctors test for dementia. As noted above, they tend to classify esp women with depression instead.
ornery dem~~ I too, lost my elderly dad to dementia, just 1-week before his 94th birthday. He had what the doctors called a 'moderate case' of dementia, although he could hardly remember anything at all (one of his sisters also died with dementia). LIke you said in your post, he couldn't remember very simple things that he'd done all his life. Sometimes he would look at his little coffee machine (just pour in water, it boils and you stir in your instant coffe) and not know what to do. If I reminded him, then he would do it. Dementia and Alzhimers is a terrible thief that robs you of everything you once knew. It's horriffic.
I'm only 58, but in recent years, I have noticed my memory has really taken a back seat. I too can look at something (like my computer at work) and not know how to log on. It's terribly frightening. I'm hoping that this is just a mere transition due to aging, and that it won't develop into dementia. As we age, we do tend to lose some memories. I used to have a steel trap of a brain (like my dad) and was very detailed.
I hope for the best, for all the families going through this ordeal.
Reni--go to a neurologist if you can, and ask for some testing.You can save some time and tears on the part of your family if you can get a diagnosis earlier enough. I hope you do not have a form of dementia. I do, and it is really taxing.
I'm lucky, my 93 yo mom is still sharp. I'll probably be alone as I age and if I get a diagnosis like this it will be time to check out.
I completely agree with you Cynical. Unless a cure is found, a diagnosis of Alzheimer's means a (sometimes) slow and agonizing death. If I was diagnosed with it, I would not want to wind up in a basically vegetative state, not recognizing anyone, or having no memory of anything. We don't like to talk about assisted suicide, but from my perspective a quality of life (or lack thereof) issue trumps simply existing.
It's really too bad the for the most part, assisted suicide is frowned upon in this country. I suspect it's due to the religious right group. It's something that should be allowed without a doubt. I too will most likely grow old alone and I too will check out if a diagnosis like this would come my way. It would be MY choice and I would die with some dignity left.
One of my friend has said that if he's ever diagnosed with dementia, he's going to take up sky diving. Another person I know decided to end his dialysis, and died a couple of weeks later.
Before my mother died of a sudden cardia arrest, she was getting signs of dementia. Alzheimer's is truly cruel for the suffer and the family... because the person dies twice.. once when they loose their independence and can no longer remember the names of their family and then once again when the body dies...brutal for all....
Well, the article says this woman has a daughter. Will she not live with the daughter eventually? This isn't being alone. A dear friend of mine has dementia, now into Alzheimer's. His kids have all gotten together and taken care of him personally, so they know he is with people who love him. It is a huge job, but they have taken wonderful care of him. His wife died a number of years ago. When you have family, you can take care of one another.
The people who do not have family to watch over them are really sad. Take care of family, everybody!
Family isn't enough. It is emotionally, financially and physically draining. Sometimes the confusion leads to violent encounters that put the caretaker at risk. Sometimes the best thing to do is to go into assited living or a home. Its not becasue the family doesn't care. Its because the family isnt able to take care of their loved one.
Furthermore, I dont know if you know how devestating it is to watch your loved one deteriorate knowing there is nothing you can do to help them. Its the saddest thing in the world. It breaks your heart every minute. I know.
An excellent idea in theory. My mother was diagnosed with the early stages of dementia/alzheimer's several months ago shortly after the passing of my father. She will not submit to further testing to determine anything else about the illness, she won't take medicine, won't do anything to help herself or let anyone else help her. Before you say that it is her illness taking over, my mother was this type of a person long before she became sick. She is the type of person that has always dictated how things will be. I have a long history of holiday dinners/get togethers that if she didn't want to cook or celebrate that she held everyone hostage. The emotional punishment was far worse if you disobeyed her and cooked that turkey that she declared would not be cooked for Thanksgiving. This was not a onetime occurrence, but an example of the kind of behavior that you usually got out of her at least several times a year. I could write enough stories about her behavior to fill a book plus some.
Add to that mix the mooch of a brother I have that has blown through the 20,000.00 + in savings (in a period of less than 3 months) of my mother's that she won't press charges against. Don't know what he will do when she is gone and the pension check is no longer coming in. When I try to talk to her about money & giving it to my brother (which she continues to do) I get told to go F__K myself and mind my own F__king business. Then you add to that my mother's older sister (my aunt) who has also been diagnosed with dementia and continues to tell my mother that nothing is wrong with her, she doesn't need medication. The same older sister (aunt) never misses an occasion to accuse me of stealing from my mother or taking advantage of her when all I have done is try to help her
I don't mean to go off on a tangent here, but sometimes it is not possible to take care of family during periods like this, especially when they fight against you constantly, no matter how hard you try. There comes a point that you just can't take the verbal abuse (that you went through for years growing up) anymore.
ladonna-2020745, I can completely relate to you. My father refuses to see that he has a problem. He'll admit on good days that his memory is really bad, but doesn't think it's a huge problem. In the last year he's had 5 hospital admissions, been a vicitm of identity theft to the tune of $60,000, had a case started by Adult Protective Services to make my sister and I his legal guardians only to have it dropped by the county, and now we're back to having APS involved after he fell out if his wheelchair and shattered his leg and spent the past 9 weeks in the hospital. They finaly did some physcological testing yesterday that he failed horribly, but he is still trying to manipulate my siblings into getting him out of the hospital even though it's clear he needs to have 24-hour care.
He's only 56 and my siblings and I are all in our 30s with young families and can't take on his care emotionally, financially, or physically. It's hearbreaking to have to see him go through this, but we've been fighting to get him help and a diagnosis for a year and half and he just keeps fighting right back and getting worse in the process.
Just because someone has kids, doesn't mean they are able/willing to care for them.
ladonna 2020705 ~~ So true, that often times the patient needs 24-hr medical care. It has nothing to do with how many family members can pitch in and help. The disease has a will of it's own, and family members need to allow the relative with dementia, to get the medical help and attention they require.
I finally had to put my dad in an assisted living facility. I went there every morning and had coffee with him before I went to work, and five days a week after work, I went and sat with him when he ate dinner in the dining room of the facility. My dad would get up every hour, on the hour and walk around with his walker. Every noise he made, I could hear, and I would have to get up numerous times in the middle of the night, and get him back into bed. He would always think it was time to get up. Half the time, he would come to my bedroom door, and turn my light on, and tell me to 'rise and shine' as he did when I was a kid. Sometimes he thought he was going to work.
He had Sundowners Syndrome, which is what most people with dementia are plagued with. They have no concept of day or night. As a result, I started getting sick because I could not get a solid nights sleep. I had a care taker come in several times daily while I was at work to look in on him. It about put me in the grave. Fortunetly, I worked right down the street, and I came home for lunch to check on him.
To find a cure for this frightening disease would be so wonderful. It's a terrible thing.
Not everyone can move in with their kids, even if they have kids! This may come as a shock, but people are not always equipped to move a disabled parent into their house, for a variety of reasons.
My husband has stroke related dementia, and the thought of him ever having to live on his own is terrifying. Right now it's fairly mild, but his impaired judgment has already caused serious problems for us. Left on his own he would not survive long at all.
I worry that I will live alone with dementia some day. I have no children and so I hope I realize when dementia is about to take me over and that I have the courage to "check out" as Cynical said
I agree. I have one adult child with schizophrenia and no other family. He is fairly independent but still needs some help. I would get all finances and other things in order and "check out"...I could not be a burden on a son who has enough of his own problems.
GoSteelers - I have the same reality - I live alone. I had two children - one died and the other lives in China. Every time I can't recall something I think OMIGOD this is it - I'm losing it! I think plenty of people like you and me will have to check ourselves out some day because it's the only alternative we have. I don't think that's going to be too hard because I'm already really missing the time, just five years ago, when I could walk better and was far more mobile. The present situation stinks, so I think I'll know when the time comes to act.
Yes, sad but very true. "Once a man/woman, twice a child..... "Family breakdowns, society and good intended laws has made this so. We do have to be our brother's and sister's keepers. My step mother is in assisted living and my wife is not too far behind. I am fortunate that I can still function physically and mentally, but I am waiting for the time that I can't. I am the tie that binds and our extended families do not want to get involved and are trying to fool themselves there is nothing wrong.
This is such a cruel disease, I wish they could find a cure. I admire those that are the caretakers of a loved one suffering from Alzheimer's.
Me to JanG...I did make deliveries to nursing homes and rest homes part time a few ago and I finally just could not stand to go in them. It was so sad...
I truly admire all of the doctors and especially the nurses that help make life better for our older people.
My siblings and I all chip in and get home care to help mom. She is healthy and fit, but dad's dimentia and deafness was dragging her down. I am happy to report they are both doing very well now. I cannot imagine how anyone could manage on their own, as it is extremely difficult to have a life and be a caregiver for someone with a bad case of dimentia. I have no experience with alzheimer's disease yet and hopefully never will.
When you chose someone to watch your finances make sure it is someone you trust. My father who has mild to moderate dementia gave my sister control of his finance after my mothert died. My sister has taken over $100,000 in the last year and is still taking money from his accounts whenever she needs it. She has overdrawn his account on many occassions and will no doubt use the remaining $30,000 before I can get to court and stop her. I am in the middle of a legal nightmare trying to get back my father's funds in case he needs help in the future.
February made 2 years my mother has lived with me due to moderate dementia and a nasty fall. Before living with me, Mom lived alone but luckily I live only a few miles from her home so I checked on her regularly. Every day I lose my Mom a little more. It's heart breaking to see a once vibrate, non-stop woman become a co-dependent shell of who she once was and will never be again. But we manage and honestly, I wouldn't have it any other way. As long as she knows who I am and can get about on her own, she stays with me. I can't bear to put my mother in a nursing home as long as she has some of her faculties.
God Bless you, if only kids realize how many diapers that Mom changed, plus fed you, nursed you,loved you so much. You are gifted person Posey. We need more like you.
Thank God I have a brother and 3 sisters to assist our eighty-six year old Mother. She was diagnosed with dementia several years ago and stopped driving just before her birthday in February of last year. This was very hard for her. It took about six months for her to adjust to life without a car but her church has done an excellent job of coordinating her trips to church and to perform errands. She has lived by herself, in her own home, for the past 17 years but we finally had to have a woman move in with her because she has become so forgetful, i.e. taking medications in addition to failing several times. Someone wrote that you lose a little more of your parent each day. This is so true. I have come to the realization that my Mom is living for the NOW. This exact moment in time is the only thing that matters to her. Not past memories and certainly not planning for future events. The good news is her home is paid for and her finances are handled by my sister. I call her every day to prevent the unenviable…forgetting my name! This is the saddest situation that my siblings and I have ever encountered, watching our Mother die a very slow death.
There is a huge difference between changing the diaper of a fifteen pound toddler and a 200 adult who doesn't want her diaper changed.
The good news is that they're pretty much unaware that they're alone.
And they can hide their own Easter eggs!
I was going to add something witty, but I forgot what it was.
And if the Republicans have their way, 3 in 10 will be living alone.
1 in 7 live alone? Does this mean 6 in 7 don't live alone? Am I missing something here?
Yes.
Not mathematically. You handled 7 minus 1 flawlessly.
The plan is for the 6 to adopt the 1....2 months at a time. Then the problem goes away. Put the sheets on in the spare bedroom.....
I wouldn't worry about President Obama, he has a large staff to help him through the day.
I usually disapprove of these sorts of comments, but this was too funny to ignore.
thanks - that was funny!! I needed a laugh.
me mum has dementia and it makes her so rude to me. she is not welcome in me house or around me kin-folk.
if your Mom has dementia...chances are she doesn't even know that she's being rude......
This is a typical misunderstanding of mental illness. You cannot rationalize with this type of disease . You cannot argue with this type of disease. You cannot ever cure this type of disease. How they behave is in a world that they see as real . You will never convince them of any other reality. Think of it as abandonment of an infant that can not talk or communicate in any rational way. This is a cruel disease but you will learn from it. Some people just cannot be care givers but some care has to be given by somebody.
Oh well we can't have the person who gave you life, wiped your arse, fed and clothed you, financially supported you and got you to adult hood being rude. you should just leave her on the streets!
My mother is in a nursing home because she broke her pelvis and is bedridden. I am unable to take care of her, because she needs 24/7 nursing care. She has dementia and she has become just downright abusive. It has been two years, and no sign of letting up. I don't think anyone should have to live long term like that, and why? She doesn't know you anyways, and doesn't care anymore. Let the people who are at least paid to handle it deal with it. I can go visit and when things get abusive, I just say goodbye and leave.
Rj--Alzheimer's and dementia are not mental illnesses, they are neurological disorders. Although you are right, mental illness is hard to live with.
i done told her a million times if i done told her once...."i'm your child! you're my mum! these is your pills that you need to eat every day!" no matter how many times i say it, she plumb just dont listen. she also is mean and rude to me and tells me to, "scat! get lost! go on, now, i said GIT!" i wont put up with it no more. she a real terror! rotten woman.
Honestly, Stinkleton she doesn't know what she is doing/saying. That having been said, you have your own life to live and "putting up with it" will not help her or help you. You need assistance from folks who are not emotionally invested in the situation.
My father was diagnosed with Mild to moderate dementia in 2008 at age 65. After forgetting to pay the house payment for three months and almost loosing the house it was apparent dad wasn't the same. It seemed to sneak up slowly but sure has advanced quickly, he was also recently diagnosed with bladder cancer and a heart murmur, not to mention diabetes. I'm 27 years old and the youngest of 5. It's been a very difficult year, especially since my mother was diagnosed with colon cancer in august of 2011, so I've been taking her to her treatments for that as well, she has one left. I try to stay positive as my siblings don't help much, but I must say it's very difficult to juggle taking care of my parents needs and trying to start a life of my own, not including having to put off school so I can be available to take them to appointments. I see a lot of young people going out and having a good time but I have no energy or time to do any of that. I pray every day for strength to endure all of this. I really feel for those out there who are struggling with this disease and helping care for those who are suffering from it as well, its hard to see your parents struggle with little everyday things. I am just trying to do my best to help them, I read the other stories above and it touched my heart. I pray for the Lord to continue to give you strength on your journey. Take care and remember to enjoy your family while you can because it can all change quickly. God Bless.
Califun I understand completely. I was the youngest in my family when my dad started getting dementia. I was around 30. I helped my mom take care of him for 10 years. He passed when I turned 40. My dad was 90 when he died but for several years he didn't know my mom or me. It was sad to see him wither away. Then my mom died shortly after. Live is hard for many people. I hope you find the strength to carry on. Good things happen too.
Alzheimers and debilitating strokes as well as cancer run in my family. I have already been a caregiver twice to family members with Alzheimers and now that I'm older myself, I don't plan to put any family members in that position on my behalf should I get it. I know what to do and take care of it myself. I live alone and am very independent and there is no way I ever want to live like that.
Shame on those idiots that have made this into a political discussion, but since some have, my comments are at the end. Dementia and Alzheimer's Disease is a very real and personal family issue that many of us baby boomers are having to deal with in what should be OUR golden years. Yet we are faced with having to take in and care for a parent; postpone retirement, absorb the added expenses; lose privacy; lose freedom to come and go; work your schedule around doctor appt's etc; and what basically comes down to caring for a 3 yr old in an 87 yr old body. But I guess most of you want to blame Bush or the republicans for this happening to our elders. Obamacare provides for a committee or panel to determine what care, if any, our elderly parents will receive. Shame.
@ fedup: "Obamacare provides for a committee or panel to determine what care, if any, our elderly parents will receive." Why in the world would you choose this arena to repeat that nonsense??? Are you simply a cruel person?
Actually fedup is completely wrong. "Obamacare" providesservice to help you with life planning such as POA's, MPOA's, and DNR and such. But hey, I guess it's best to just deal with it AFTER it's happened huh fedup? How proud your parents must be fedup to know they raised a child that is so self absorbed they will resort to whining on an Internet site about me me me when their parents are ill and need help. Poor baby, those damn parents that gave you life and are the very reason your self absorbed ass is even here, how dare they infringe on YOU and YOUR life.!
Actually, it was Reagan administration that said: If you go to Hospice, we will no longer cut you a check for other medical care. If you continue fighting your cancer or whatever, we will not fund your Hospice. It's either/or but not both. Do you want to continue your fight to live, or do you want to die? Sign here.
My father recently passed away from Alzheimers. I'm extremely thankful for my step-mom, without whom his already hellish existence up until his death would have been even more unbearable. As they live(d) in SoCal and I'm in NorCal I was not able to look after him myself.
All praise to those who stick by their loved ones in trying times.
I work for the department of aging and I am the caseworker for all of our county's guardianship people. Our agency is often asked to take guardianship of people with dementia who either have no family at all or have family members that are unable to care for them. We attempt to put care in place in order to keep people in their homes for as long as possible, however we end up placing most of these clients in nursing facilities. Unfortunately a lot of our clients don't have the resources and we don't have the funding to keep them at home.
We have also been asked to take guardianship of many people who DO have family members who are willing to take care of their loved one. Often people with dementia are unaware there is a problem and are very resistant to losing their independence and are unwilling to cooperate with family members. We are then ordered by the court to take guardianship. We attempt to keep the families as involved in the decision making as possible and consult them often. This allows the family to be involved but not be the target of the client's anger at being placed. Our agency (usually me personally as the caseworker) takes the fall as the bad guy, the family is able to visit and be involved and most importantly the client is safe and being cared for.
This is never an easy situation. I do not at all enjoy seeing someone lose their independance. I truely wish we never had to place anyone. The advice I would give to family members who have loved ones with dementia is to try not to make decisions based on your emotions. I know this is difficult, it is for me every time we place someone. I may not have ever met the client until the day they go to a nursing home but I can't help but think about how upset I would be to lose my independence. The most important thing in these situations is the client or family member's well being and sometimes that means making tough decisions because you KNOW that it is in the person's best interest.
I will admit that the client's hate me before I ever walk in the room because I represent the agency that has taken their independence. I can however tell you that in my experience most of my clients DO adjust to the nursing facility or personal care home where they have been placed. It usually takes a month or two but eventually most of the clients become more social and get involved in activities and have better quality of life than they did when they were at home alone and not eating right, taking their medications and having contact with others. I am not saying that I am looking forward to being placed in a nursing facility someday or that it is always perfect but it often turns out to be much better for a person with dementia than I would have thought before I started this job a few years ago. Contact your local department of aging for advice if you thing a loved one has dementia and you are concerned for their well being or if you just have questions about options for people with dementia. These situations are always emotional and difficult but when a person has dementia often someone has to step in and put their emotions aside to ensure that a loved one is cared for. Treat them with as much dignity and respect as you possibly can but even if you believe they might hate you for the rest of their lives, do what you must to take care of them.
Many live alone, and many others continue on and continue to be elected Democrats.
Do they know it? and if not? why spoil thier day and tell them?