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Alzheimer's & Dementia Care

Caring for a loved one who has Alzheimer's or another dementia? In addition to the Stage Groups via the Steps & Stages resource, we also offer this new online support group for family caregivers with loved ones across the stages of Alzheimer's or dementia. Please introduce yourself, share about your caregiving experience, and let us know how we can be of help to you.

Additional resources that may be helpful:

Group created in February 2014.


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Onlyacaregiver said...

4 days ago

My mom is 92 and has a hard time balanceing. She holds onto furniture and walls when she walks. She has a walker available but will not use it. My husband and myself work during the day and we cannot be with her. I want to bring in help but my mom does not want anybody at the house with her even though she complains that she is lonely. Nobody has POA and she will not sign POA. She takes a lot of time to care for her without any help. She has the money to pay somebody to come in, but insist that she does not want anybody to come into the home because then she would have to get use to that change and she is tired of learning new things. I need help and I need to know what to do. I have no diagnosis but I am sure she has dementia. She will not let me take her to the doctor which she has not had one in years. I just got her accepted to see my doctor but she does not feel that she needs to go. She has never been on medication and she has done a full life of activities that most people do not do in a life time but now I see her just being alone during the day and calling anybody she can to listen to her, and I see the disease eating away at her. My mother did art all her life and has over 300 pieces and we had an auction, but the art pieces were not allow to be sold. We suggested putting them in a temperature control storage unit so we can move on and get her house sold. She now wants us to get a building for her to hang her art work in so she can sell her art. She wants to hire somebody to run the art gallery and she tells me that it is her money and she can do with it what she wants. She will not help by having anybody come into the home and pay for that, but wants a gallery. She pays nothing while she lives here and my husband and I have no life accept when we work and even then I worry about her being alone. Also I got one of those medical alert system for her which she feels that she does not need. I have suggested a million things to her to help with the situation and she continuously says no due to learning a new change. Without POA I am not sure what to do. If I get a diagnosis I know I can go for guardianship but the lawyer I went to see stated that it would be about 5000.00. I love my mom, but she is exhausting us and so negative about everything. I need a break what can I do. Everything you read says not to argue with her, but giving into her is not doing anything also. She just continuous to complain, repeat things a million times, when confused, she cannot hear or understand, helping her physically getting to one place to another, showering her and doing her daily hygiene, talking to the siblings on the phone and then they give their two cents worth to her on the phone and that causes her to be upset, the distrusting, she plays between my husband and I, although that has lessen due to either of us will listen to her when the other one is not present and we tell her that, so she leaves it be. I feel that my home is not where we want to be anymore and we just want our lives back. This person I am living with is not the person that she use to be and even though there may be glimpses of her once in a while, most of the time she is angry and this very negative person. I know that she has a hard time losing everything and I know that she knows her self is gone and she has told me that she does not feel like a person anymore. What do I do to get somebody in here and help us while we are at work and she pays for the help. I make just enough to pay the bills and we are getting close to retirement age and would like to retire at some point. Any suggestions on getting her to complete POA and Durable Health paperwork. She has nothing in place. Any suggestions would help.

emptynest said...

4 days ago

4 days ago

12 days ago

I need some feedback. I apologize for going on and on.

Quick background: My mother was 75 when I lived with her for almost a year, in her home, when my dad died and when I was going through a very difficult time (e.g. autoimmune diseases, loss of parent, disagreements with my siblings about money). After that year she we were both doing a lot better, but I felt trapped, had major financial issues that I was stressed about, and needed to leave. Luckily, she was strong and able enough to take care of herself and I moved to an urban area where I could make a living.

Fast forward to today: My mom is now 80, suffering with mild-moderate dementia (I think), and has serious hearing loss, My financial situation is much better, and I decided to move back in with my mother to help take care of her as she ages. I have been here about 6 weeks and don't know if I can do this! Although we talked on the phone almost every day while I was away, I was not prepared for this. I feel that I am being weak and selfish as she is really not that bad yet. What has changed? For one, I think I put too much of my previous unhappiness here at home on being sick and struggling financially. Now I am feeling just as trapped and miserable as I was before. Also, my mother rarely leaves the house now. She used to go to church every Sunday and would run errands or see friends at least once or twice a week. Now she is always home, following me around, wondering what I am doing and where I am going. I am never alone. She opens my door without knocking and told me yesterday that she put her ear against the wall we share to listen and heard a ticking sound - Do I have something in the bathroom that ticks? Who cares?! Why are you listening to me in the bathroom? She can't hear well and I find myself feeling angry all the time because I am screaming. Even if I'm happy, once I start yelling so that she can hear me, my body tenses up and gets the message (wrongly) that I must be upset. My sister that stops by once a week for an hour walks on water, but if I ask my mom to please let me know when people are coming over, I get, "I'm always in trouble about something!" This makes me feel terrible, like she thinks I am mean, and does not appreciate me. I no longer respect or talk to my siblings and it is a huge stress both when they come over (and I stay in my room) AND when they don't come over, which makes me angry and resentful. If I had my own space I would not have to deal with them.

The thing is, all the dementia stuff is easier for me to handle - the losing of items, repeated conversations, becoming disoriented, having trouble paying bills correctly. It's her constant presence and total loss of independence that is killing me. I don't know anyone here, it is not a big town, and I feel isolated, though I have zero desire to get out or go do anything. I know this doesn't make sense, but that's how it is. I also recently found out a friend from high school is dying of cancer at age 46, the third of my friends to recently die in their 40s or come close. I think about my own mortality and feel like I am going to die alone here with no one to care about me, or will waste what few good years I have left being miserable.

I am considering moving out and getting an apartment nearby. I know it will only be a short while before my mom REQUIRES more full time help, so I'm not sure it's worth it. I also don't know that I can be the person that cares for her. She is okay financially, but does not have extra to spend on care and is insistent on staying in her home. I feel like a failure, and a selfish, bad daughter, I can't stand how my sisters shirk their duty to her, and it kills me that I might end up doing the same.

What should I do?

12 days ago

12 days ago

emptynest said...

14 days ago

My husband has Parkinson's & dementia. He knows who everyone is & where he is & does not wander. He can't be trusted to cook a meal, drive, take a phone message, or do simple home repairs. Lately I've noticed a new problem. Although he has no problem showering, dressing & getting to bed, if he gets up at night to use the bathroom, when he returns he sometimes can't remember how to get back into bed! A couple of times I have found him in bed on his hands & knees & unable to figure out how to lay down. Last night was one of those nights. I just reassured him & talked him thru it. Sadly, he's aware enough to be aware of his cognitive decline. Today he told me that he had a dream that doctors were standing over him saying, "there's nothing more we can do." How do you convince your loved one everything will be ok, when you know it won't?

gpgalatz said...

15 days ago

Good Morning,

I just admitted my DW to an Alzheimer's facility near our home. She did not know ahead of time but seemed to be okay as she blended in to mixing with staff and other residents. We left as she was occupied with others.. They asked that we wait a week before visiting to allow her to become familiar and to get used to depending on the aides. This has been just gut wrenching for me.

Any suggestions on handling the first visit back to see her? I need to try and enter happy and positive. Not sure how to approach the first time.

Feeling unprepared

gb402434 said...

14 days ago

gpgalatz said...

14 days ago

stewert said...

15 days ago

has anyone experienced a person wearing layers of clothing?

15 days ago

Chdavis2006 said...

7 days ago

kathlins said...

19 days ago

My father-in-law has dementia. He has had a woman in his life for many years. She has used him for many years. She calls and comes by to see him (he is home with 24 X 7 caregivers) and gets him all riled up. She was over heard telling him to take back the POA he has given to family members. This morning she was going to come by, get his car, and pick him up and take him to town, even though she has been told time and again that she can't do this. She keeps after him, telling him constantly to have us fill his car up with gas and get it ready. She wants to use his car and gas. She has never taken him anywhere in his car. After she keeps hammering at him to do something like get the car filled up, or recently for months it was for him to get someone to fix her driveway. Anyway he gets very confused. And then she will get mad at him and not answer his calls and he gets very upset, always worried something is wrong with her,, to the point that we have taken him to her house and pounded on her door until she gives up and comes to the door and he can see she is okay. I don't know how to adequately explain what this does to him and to his family. Last summer she took him to walmart, he was feeling bad and she left him in the hot car with the windows up and took the keys. He had a heat stroke. This spring she refused to take his walker and when they got back home she didn't help him inside and he broke his arm.

emptynest said...

18 days ago

Crystal G said...

21 days ago

My mom has dementia. She's never officially been diagnosed with Alzheimer's but I'm sure she has it. In January she fell and fractured her knee. She was in the hospital for two months because she wasn't allowed to put weight on it. She had a full leg cast. During this period I made the decision that she can no longer live at home. My brother lived with her but we both work full time and couldn't be there during the day. I went over every night to make her dinner and spend the evening with her and put her to bed. I decided she needed to be put in long-term care. She stayed in acute care at the hospital while she waited for a bed to become available. She didn't like it but it kind of became her new normal. The nurses were fantastic but they aren't set up to look after someone long-term. Finally after six months a bed opened up. Brought mom to her new home, not even sure she knew what was going on. When I left that first day I cried so hard I had to stop the car. The nursing home is more than an hour away so I'm only able to visit on weekends. It's been a little over a month since she's been there. She refuses to participate in activities, is cranky with the staff and cries. I hate to see her like this and it breaks my heart. I don't know what to say or do to help her.

emptynest said...

21 days ago

GoodHair said...

15 days ago

RaquelM said...

25 days ago

My mother is in late stages of Alzheimer's was just diagnosed 1 year ago. I am her sole care provider with assistance from my teenage daughters. I feel overwhelmed as it seems that nothing I do helps her. I am financially stressed, barley making ends meet, I received payment because she has IHSS but it is very minimal. I just applied for protective supervision which I hope she is approved o I can get extra help. I am needing support groups to talk to and maybe learn ways in which I can better help her and maybe help myself. I notice I am lately very depressed and feel guilty for no longer wanting to care for my mom, But at the same time I can not see her in a facility. I have learned that my attitude will contribute to her own attitude. I try to remain calm and patient but at times I get frustrated and I do not like feeling this way. She cries all day, I try to find ways to comfort her but nothing helps, there are times I want to break down myself. I feel so guilty for feeling frustrated and resenting her, I know it not her fault but it is just how I feel at times.

25 days ago

25 days ago

DonnaElizabeth said...

25 days ago

Am needing advice from those speaking from experience concerning early onset dementia. My mother came to live with me almost 7 months ago after living with my sister who is in her mid 50's. It was concluded after mom got here that she has dementia. My sister had been describing moms symptoms and telling me she was experiencing the same things mom was. She talked about how the lights in the store bothered both her and mom. She spoke of the store being over stimulating to both her and mom. My sister told me of being dizzy and needing to lay down quite often. My sister had to arrange her kitchen in a certain way or she could not cook. Clean up was impossible for her. Her kitchen was her biggest struggle-- just moving around in it and preparing food. This was my sister not my mom. My sister said she sometimes forgot to feed mom a meal. When mom was in the shower my sister wouldn't notice moms cries for help. Do these instances seem to indicate early onset? I talked to her husband and he remarked that it seemed odd that they both had same symptoms-- only my sister was trying to say that they both have a rare disease. I told my brother in law that my mom was tested and without a doubt has dementia. Any thoughts? Anyone with experience with early onset? I cannot speak to my sisters memory loss except for her forgetting to feed mom and leaving her in the shower. Help!

DonnaElizabeth said...

25 days ago

Stumper said...

22 days ago

26 days ago

My mother is 88, going on 89 and is an Alzheimer's patient. My only brother passed away several years ago, so I am the family mom has to take care of her. I am close to retirement but still working. Mom has been asked to leave several facilities in the past 6 months because of behavior issues. I understand one was an Assisted Living and they were not staffed to meet her needs but then we found a Memory care unit and now they are requesting I look for other options. Mom can be kind and sweet, but unfortunately, for whatever reasons she can become agitated and aggressive towards staff and other residents. However, if a Memory Care Unit is equipped to handle this type of behavior, who is? They have suggested a small group house of 5-6 patients. Does anyone know anything about this type of care? I'm feeling pretty lost, I have tried to research care facilities and thought I had found the answer with this last place. Mom is seeing a neurologist and he is trying to balance her meds to prevent these outbursts but it all takes time and patience. I don't know where to turn next. Suggestions? Help? Please!

25 days ago

emptynest said...

20 days ago

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