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Jeanne, she hasn't seen a dementia specialist. I will definitely look into this. Her General Practioner whose known her for years ordered an MRI and she was diagnosed with dementia. I've been reading many books on dementia and how to deal with my mom. I will also seek a discussion group on caregivers. Thanks for your suggestions.
rdf3340, have you tried joining any discussion groups specifically for caregivers of dementia patients? That might help you get up to speed more quickly.
I'm sorry that you were not told to expect the dementia to get worse. That is what progressive dementia does -- it gets worse. I would not call your description "mild", although it is probably milder than it will become.
Other than the general rule that progressive diseases progress, there is really a huge variation in how fast dementia moves, and what path it takes. It depends on both the type of dementia and the individual patient.
It may be that your mother will adjust, settle down, and enjoy years in AL. Or it may be that she will need greater care and supervision and a memory unit will be more suitable. Please do not think of that as a punishment or as a disaster. If your mother needs more than "assistance," be glad there is another alternative for her.
Has she seen a dementia specialist? There is no cure, but there may be some options for managing the symptoms that would improve her quality of life (and yours).
Now that you know that your mother has a serious debilitating and progressive disease, I suggest two paths to pursue: 1) seek expert medical help for your mother. (Many people disagree with this, saying it is hopeless so why waste energy on it. I have had very positive results doing this, so naturally I'm inclined to sugest it.) 2) Prepare yourself to deal with this. Join a local support group, if available. Read up on dementia. (If a doctor can pinpoint the likely type of dementia, that can be a help.) Contact your local Alzheimer's association. Even if that isn't the kind of dementia your mother has, they have a wealth of materials that will be applicable to your caregiving journey.
Best of luck to you as you begin this difficult journey.
You paint a very different picture here and it is easier to understand your feelings. I too had a mother with dementia who lived with me. It is easy to "fool ourselves" even when we are professionals. Your mom will adjust and letting her have some "alone time" to make the adjustment is sound advice. However, picking the right place is always more difficult than we first think. I think you should trust your own instincts - they seem to be good.
ELDSYS and Zimlady, Early dementia is a loose term that I use. From everything I've been reading lately, and I've been reading quite a bit, she's probably had dementia over the last 10 years since my dad died. Her doctor told me last June that I should take away her keys. I waited until this past April. As I said she's 87. We started to notice memory deterioration about 5 years ago, but never as bad as the last 12 months. It seems to have deteriorated expotentially. I hired someone to take her to her drs. appts. even though she was driving. I also worked at home one day a month so that I could drive her to her hairdressers. As I said the deterioration was pretty quick. When I took her keys away it was the beginnng of the end. She felt like she was a prisoner in her own home even though we hired people to come to her house three to four times a week. In addition, I went over there every day after work and sometimes on my way to work. She fired everyone that we had coming to her house. She became paranoid and thought that everyone was stealing her things. By the way, when we moved her out, we found over two hundred roles of paper towels and the same amount of toilet paper. She forgot where she hid most of this. She started being afraid to go to bed at night in her own house and some days she would call me and ask me where she was. So we made a decision that she couldn't live by herself any longer and we all incl. my brother and my Mom went out to look at AL. She loved the place she picked and now doesn't even remember visiting it. She said that never thought that we would leave her there. She thought that she would be visiting. Even though she put her house up for sale so that we could afford the AL. So in looking back to my comment about mild demential, I think we've been fooling ourselves. Fast forward to where we are now, she is about at the stage of Laurieq200's mom. We are so afraid that she will end up in the memory unit. She called me and didn't know where she was and totally forgot that I had been to see her the last two days. She said that she didn't know why we put her there?? I've been told that you just need to comfort her and not argue with her since you will never win an argument with someone who has dementia. So will the resistance ever end, I don't really know. I was told that it could take from 3 to 12 months for her to feel like it's her home. However, now they're not so sure. With your mom Zimlady, that could happen. However, I was never told that her dementia would get so much worse. I guess we were fooling ourselves and she was much worse than we thought.
this is killin me .. i hope and pray that my kids dont do that to me . i would die of a brokenheart . losin my husband and buried him then wham kick me out of the house . oh lord plz no .
You comment that your mom has early dementia. Just how severe is her dementia? Early dementia implies to me that she could have been involved in the decision making, you say that you moved her into the ALF. Was homecare not an option to help her through her grieving period in familiar surroundings while making the placement decision?
Laurie, My mom has now been in AL for two months. She had early stage dementia and we couldn't leave her living alone. We hired help and she fired them. She didn't want anyone but me. We took her keys away in April and felt it made things even worse but she's 87 and really couldn't drive any longer. Anyway, her dementia has gotten worse not better. We are meeting with a psych consult next Friday since she's so angry and so depressed, she alienating people at the AL. She's never been a social person on the first place, but we were hoping that she would make a friend or two. We think that she needs an antidepressant. It won't help the dementia but maybe will help her moods. I totoally agree with everything you've said. When my mom calls me I get a pit in my stomach. She cries, screams threatens to kill herself. I've not changed the ring tone so that I know when it's her. I've also instructed the AL that I turn my phone off after 7 in the evening since that's one of her worst times, even though she has them all day. So my friends and family call me on my home phone instead of my cell. The AL knows that they can reach me on the home phone for emergencies. I know that it's important to separate the two behaviors, but it's really really hard. It hurts so much. I know it's not her when she's screaming at me. But it still hurts. How do you redirect her attention? My mom will start by saying that she doesn't belong there and she wants to come home. Tells me that we put her there against her will. She picked the place. My fear is that she will be put in our memory unit and then she will lose all of her freedom. She loves to walk around the place and sit on the porch. She won't be able to do this if she's in the memory unit. Can you give me some advise? thanks so much.
I'm so sorry to hear you've had such a struggle - it is stressful to feel as if our parent is at odds with us or just plain unhappy. My mom has never stopped asking to go "home" or to move to a different facility. She would call several of her children up to 8 times a day, leave msg's saying she wants to be picked up from work, taken home, etc. She was moved 2 weeks ago to the memory unit of her assisted living residence, she cries every day. What has helped us is to learn as much as we can about dementia - a road map to guide us through these very common behaviors associated with dementia. To help my 5 brothers understand better, I refer to "mom behaviors" for her lucid moments) and debbie dementia moments, when she is crying & scolding us for locking her up in that place. It's important to separate the two. We reassure her we love her, the redirect her attention. Hope this helps. Best a luck to you.
Hi. My mother has Mid stage Alzheimer's & I live in another state. She doesn't know how old she is, the date or what happened yesterday, let alone 10 minutes ago. It was very dangerous for her to be in her home even though I had caregivers for the a.m. and afternoon & a woman living there five nights a week. I transitioned her into an Assisted Living Facility by having the Caregivers take her to Adult Day Club 3 days a week for six months but, still, she wouldn't agree to move there. Finally, I put her in ALF two weeks ago against her will. I moved her furniture in while she was at Day Club. It was awful. She hates me and calls up a moving co. each day to move her back to her house. I have caregivers come to visit and the staff tries to keep her engaged but she says she hates living there and wants to go home but, of course, she can't. How long will this resistance last? E. Clark
Well, it may be just time to make friends and get used to it, but do check it out thoroughly. It may be a nice place but just not right for your mom. I found that out the hard way with one facility, I thought it was great and if I ever need one, it will be my pick, very homey and busy in a good way. But Mom hated it so bad she was very anxious and gave herself a heart attack - she found it spooky, not well-lit enough, did not like how a lot of residents sat around chit-chatting in the hall, which I thought was a good thing. She liked the place I moved her to a whole lot better, though it was my second choice; I thought it was a bit too sterile-looking and too spread-out, but she was immediately more comfortable there. And it might help to get in there yourself and make sure the food isn't awful and calls are answered reasonably quickly. If your mom can tell you what specifically she does not like about the place itself - rather than just the idea of being any place but her own home or yours if that's not possible - it might be a huge help, but unfortunately mine couldn't until after the fact when she was in the hospital for her MI! I was starting to guess she did not like the style but also (mistakenly) thought she'd just get used to it, but some assosciation she had with it all really creeped her out and made her extremely anxious, more than she really let on, then she started yelling and calling out all the time and doing badly in PT and it went downhill form there. After less than a week, they wanted me to let them take her to a geropsych, but I got her to the ER instead which turned out to be the right move, and of course now I regret not moving her earlier though I can see why I didn't want to overreact either....bless you, and hope you can look into it and get enough ifnromation to make the right call for you and your mom...and condolences on the loss of your dad. It can be hard to help everyone else who needs you to be "in charge" when you are grieving too...
laurie .. am sorry for yor loss , since you have explained it clearly i understand now . you all have done what you all could do . ur mom will have to get used to begin where she is now . again ,,, sorry for ur loss .
Thanks for your thoughts-I appreciate it. Initially, there wasn't enough space to spell out the entire situation-might help to know more. Shortly after my dad's cancer diagnosis, he suffered a heart attack, was hospitalized for a week. For two years previous, he was Mom's primary caregiver (with our help). She cannot be left alone for more than a few hours. He made sure she ate, called for help if she fell down or became ill, basically helped her with more than we knew. We began taking turns caring for mom, around the clock, while he was in the hospital. When he returned home, we set up a care schedule for them both using our 8 siblings, their spouses and adult children. The shifts ran AM., PM, and two people for overnight (turning dad was difficult). Shortly after, mom was hospitalized with influenza! She returned, they both were on oxygen, Dad was now on hospice. All this took place in approx. 8-9 weeks! After his death, we couldn't keep the care schedule going as many family members used vacation time, put off important planned events, etc. That is why mom was shown a few ass't living facilities and she chose the one she is currently living in. Due to her dementia, she doesn't rememeber it!
The part I don't understand is "Mom HAD to go to an assisted living facility." Her early dementia causes enough confusion without the added stress of being placed in unfamiliar surroundings AND having to grieve for her husband. Before I make decisions for my Mom I try to mentally walk around in her mocassins for awhile. I would find it horrific to go to a facility with all that is going on in her life. Her dementia does not make her unaware, it makes her more confused and fearful. Is there no one who could take her in temporarily until she could get used to the idea of new placement? Even if you were moving her into a regular apartment, it would be new and unfamiliar. Also, I would not dismiss her concerns about the facility she is in. Even the best ones do not provide the TLC she would receive from a family environment. We are not judging your family's decision, but with the info. you provided, I hope you understand that it seems a little harsh that she was moved so quickly.
I would think that your mom would need to be around her family and friends after just losing her husband. That's really sad that she had to go right into and assisted living place with a bunch of strangers. Maybe she'll get used to it someday, or maybe she'll go downhill fast. I feel so sorry for her.
When my father died we really didn't realize that my mother was in the beginning stages of dementia. For 3 yrs she lived alone with me coming over all the time to help her with everything even though she insisted that she was very capable of taking care of herself. When she finally got to the point were I felt she should not be living alone anymore I moved her into an ALF against her will...Yes it was terrible and the hardest thing I ever did. I also didn't go visit her for quite awhile but my children did. She was very angry with me and told me that I was the worse daughter in the world...It took her almost 3 months before she adjusted to living in the ALF. Now she is very happy living there and thinks all the residents are old friends.....hope you have as much good luck as I did with the placement......just give it a little more time.
When my father-in-law died his wife was totally unprepared to make ANY decisions at that time. After she fell and broke her hip her doctor told her that she could NO longer live alone so we took over and found her a really nice place. My mother-in-law was still shell shocked at that point from his death, so she was useless in trying to help us find her a place. So, we moved her lock, stock, and barrel into a very nice asst living place. By that time she was getting her 'sea legs' again and was REALLY upset that we moved her there. She cried and whined about wanting to go back home for 3 -4 months at least. It was terrible, I felt terrible for her, but it was necessary. Your mother will get used to it eventually. Give her some time to acclimate to being thrown into the deep end so to speak. And after 6 months she still wants to change to a different place, and not just say she 'hates' it there but actually wants to go somewhere OTHER than the place she's in, I'd listen to her.
why cant she has a choice of where she would like to be at ? maybe theres something strange where she s at ,-the other place she may knows some of people that is there and she wants to be there . did you ask her why shes not happy with this one and why she wants to go other places ? work with her and let her have a choice of her own . i do agree with xtanice , - not to visit for 3 to 5 days , let her calm down but plz do ask her why shes not happy there ? my dad has dementia , he still has his mind and gives me good pointers , something bothers him i ll be sure to fix it .
she lost a husband last 4 weeks ago and bam she has to move , it is one big heartbreakin . if that was me i would be so crush !
I am a homecare and hospice nurse. I've been providing care in ass't living facilites since 1993. My advice would be, to leave her alone for at least 3-5 days. No visiting or calling. In form all the staff there that you are doing this to force her to become more familiar with the facility. Get them to take her to the activies and report to you daily on her progress. I wish you the best of luck. I would recomment a home health companion to visit with her at least once a week, but make sure you only use a medicare certified agency and even better JCAHO accrediated. Cheryl RN
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
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APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
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I'm sorry that you were not told to expect the dementia to get worse. That is what progressive dementia does -- it gets worse. I would not call your description "mild", although it is probably milder than it will become.
Other than the general rule that progressive diseases progress, there is really a huge variation in how fast dementia moves, and what path it takes. It depends on both the type of dementia and the individual patient.
It may be that your mother will adjust, settle down, and enjoy years in AL. Or it may be that she will need greater care and supervision and a memory unit will be more suitable. Please do not think of that as a punishment or as a disaster. If your mother needs more than "assistance," be glad there is another alternative for her.
Has she seen a dementia specialist? There is no cure, but there may be some options for managing the symptoms that would improve her quality of life (and yours).
Now that you know that your mother has a serious debilitating and progressive disease, I suggest two paths to pursue: 1) seek expert medical help for your mother. (Many people disagree with this, saying it is hopeless so why waste energy on it. I have had very positive results doing this, so naturally I'm inclined to sugest it.) 2) Prepare yourself to deal with this. Join a local support group, if available. Read up on dementia. (If a doctor can pinpoint the likely type of dementia, that can be a help.) Contact your local Alzheimer's association. Even if that isn't the kind of dementia your mother has, they have a wealth of materials that will be applicable to your caregiving journey.
Best of luck to you as you begin this difficult journey.
So in looking back to my comment about mild demential, I think we've been fooling ourselves.
Fast forward to where we are now, she is about at the stage of Laurieq200's mom. We are so afraid that she will end up in the memory unit. She called me and didn't know where she was and totally forgot that I had been to see her the last two days. She said that she didn't know why we put her there?? I've been told that you just need to comfort her and not argue with her since you will never win an argument with someone who has dementia. So will the resistance ever end, I don't really know. I was told that it could take from 3 to 12 months for her to feel like it's her home. However, now they're not so sure.
With your mom Zimlady, that could happen. However, I was never told that her dementia would get so much worse. I guess we were fooling ourselves and she was much worse than we thought.
My mom has now been in AL for two months. She had early stage dementia and we couldn't leave her living alone. We hired help and she fired them. She didn't want anyone but me. We took her keys away in April and felt it made things even worse but she's 87 and really couldn't drive any longer. Anyway, her dementia has gotten worse not better. We are meeting with a psych consult next Friday since she's so angry and so depressed, she alienating people at the AL. She's never been a social person on the first place, but we were hoping that she would make a friend or two. We think that she needs an antidepressant. It won't help the dementia but maybe will help her moods. I totoally agree with everything you've said. When my mom calls me I get a pit in my stomach. She cries, screams threatens to kill herself. I've not changed the ring tone so that I know when it's her. I've also instructed the AL that I turn my phone off after 7 in the evening since that's one of her worst times, even though she has them all day. So my friends and family call me on my home phone instead of my cell. The AL knows that they can reach me on the home phone for emergencies. I know that it's important to separate the two behaviors, but it's really really hard. It hurts so much. I know it's not her when she's screaming at me. But it still hurts. How do you redirect her attention? My mom will start by saying that she doesn't belong there and she wants to come home. Tells me that we put her there against her will. She picked the place. My fear is that she will be put in our memory unit and then she will lose all of her freedom. She loves to walk around the place and sit on the porch. She won't be able to do this if she's in the memory unit. Can you give me some advise? thanks so much.
E. Clark
you all have done what you all could do . ur mom will have to get used to begin where she is now .
again ,,, sorry for ur loss .
Is there no one who could take her in temporarily until she could get used to the idea of new placement? Even if you were moving her into a regular apartment, it would be new and unfamiliar. Also, I would not dismiss her concerns about the facility she is in. Even the best ones do not provide the TLC she would receive from a family environment.
We are not judging your family's decision, but with the info. you provided, I hope you understand that it seems a little harsh that she was moved so quickly.
Your mother will get used to it eventually. Give her some time to acclimate to being thrown into the deep end so to speak. And after 6 months she still wants to change to a different place, and not just say she 'hates' it there but actually wants to go somewhere OTHER than the place she's in, I'd listen to her.
did you ask her why shes not happy with this one and why she wants to go other places ? work with her and let her have a choice of her own .
i do agree with xtanice , - not to visit for 3 to 5 days , let her calm down but plz do ask her why shes not happy there ?
my dad has dementia , he still has his mind and gives me good pointers , something bothers him i ll be sure to fix it .
she lost a husband last 4 weeks ago and bam she has to move , it is one big heartbreakin . if that was me i would be so crush !