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Looking for support and any advice
Posted: Monday, September 9, 2019 10:31 AM
Joined: 7/28/2019
Posts: 2

Hi all. I'm new to the ALZ connected board. Just started looking around the site to see if I can find any info on starting up a support group for carers in my area since the closest one is an hour away.

My Mom is 78 and been in a mental decline for over a year now. With the last 6 months seeming like a slippery slope.  She has all the classic symptoms.. forgetfulness, misplacing things, forgetting to pay her bills, etc.  She has had an apartment in our lower level for 23 years. So caring for her has always been my "job".  I do have 3 younger brothers. When there are issues, they generally do not respond with much (or 1 will tell me what I "should" or "could" be doing).  I do have one brother whose wife is very supportive and they are always going to help with her in whatever way they can but they live 9 hours away. So it's limited due to proximity. 

I want to start a support group here and wondered if anyone has done this. I have never started a group before. 

My Mom is becoming very frustrating to be around. And I'm around her 24/7. There are no boundries, she is very self centered, in the way that the world revolves around her needs and no one elses.  She no longer drives so now thinks that anything I do, anywhere I go or talk about should include her as she is a "caged animal". (Lovely)  She goes out several times a week with me and we have nice days... lunch out, shopping, maybe a movie.. etc. But then the next day it's as if she's been "caged" up for the whole week. She is now having bouts of crying. Feeling sorry for herself. She will call if she comes upstairs and sees us gone.. crying that no one cares about her. (Even after declining to go out to dinner with us!)  There is a long list of frustrations that I'm sure most of you also have. I am trying to be patient and kind.. but honestly my Mom and I have lived together all our lives and we have always had a good relationship but with a little bit of friction. I've never been the kind of person she thought I should be. I'm not frilly enough, my hair is too long, I'm too direct, etc....  So now she is calling my brothers crying and carrying on about no one caring and they call me to find out why she is so upset. I explain and explain but they don't completely get it. And now I'm feeling as if I'm always defending myself to them.  Ugh. I will also add that she lives with us free and we have always covered her expenses here. My husband is a saint.   I need feedback from others going thru this so I can learn some new ways to deal with all this. And I need some boundries but have no idea how to establish them at this point or if I even can. She has no memory unless she is offended... and becomes obsessed about one single thing for days.  Help. lol


Posted: Monday, September 9, 2019 10:57 AM
Joined: 4/1/2014
Posts: 5059

I'm sorry you must be here. The beginning of the disease is a very tough time for caregiverss. Our LO is still "with it" enough to know how to push our buttons . I had to grow a very thick skin and not take my mother's barbs personally. And like you, I had siblings who were of little help, bu they at least did not undercut my efforts to care for my mother. If your brothers are not part of the solution, they are part of the problem, so the next time they call with why and what you are doing t cause mother to call them, tell them to d something constructive like take mother to dinner or into their own homes for a day so she will "get to feeling better".

Call the Alz hotline and ask them about getting a supprt group in your town. Tell them you are willing to even run the thing. They should want to expand their reach into all towns.  There are other Alz/dementia organization-you are reach out to them too if you don't get answers from Alz Assoc.

Of course, this group is always ready to support you There is also chat rooms. You could come here and tell us you are in the chat room or a time you will be and anyone who is online at the time may join you. I'd be happy to chat with you by email. JUst make me one of your "Connections".

Posted: Monday, September 9, 2019 11:04 AM
Joined: 6/11/2019
Posts: 516

Sorry ... welcome to the nature of the beast. Doubly sorry you have to be welcome to it. 

I'm there, too. Several years now of worsening lifestyle with 2019 being the worst thus far.

If she's not on any medications, you need to get her evaluated and get some. They won't cure or fix it but will make it easier. You also need someone to come and give you a break or get her involved in a local adult daycare.

this site is full of great information.

Best of luck. Hugs.


Posted: Tuesday, September 10, 2019 1:23 PM
Joined: 6/12/2019
Posts: 44

Hi Janice,

Ugh, hang in there. It's a bumpy ride.

I wanted to tell you that there are Alzheimer's Association support groups and there are ones that aren't specifically (how do you say it) authorized/approved whatever by the Assn. I think if they register with Alz. Assn., they have access to pamphlets, info, etc. and are supposed to be listed on the website search. When I go on the AA website, I can never find a thing. Even my Alz. teacher said the same!! I did a Google and Facebook search and found groups that were within my area, not all are registered, but are still good groups. So just look, ask people and hopefully you'll find a meeting close by. The Alz. Assn. is always looking for people to start support groups, so that's always an option! Best of luck to you, the groups definitely help

Posted: Tuesday, September 10, 2019 2:24 PM
Joined: 9/10/2019
Posts: 1

Good afternoon.  I am NEW to this site.   I am about ready to giveup and looking for someone to ground me and tell me what to do.   I am feeling hopeless at this point.

My mother, 75, has been tested for dimensia back in 11/18 and was officially diagnosed this year with early onset alzheimers or unknown dimensia.  

I became her POA 2 years ago when we found she had been scammed for almost 3 years and sent thousands of dollars to someone overseas (completely unlike her) and he ability to make decisions was WAYY OFF.   So took over her finances and have been trying to get her on track, however, she lives alone, she is a narcissist, and she has also been diagnosed with mental conditions such as MDD with pschotic issues, and her temperament and combativesness is OFF THE CHARTS!  

The problem with this is that physically she is in great condition.   I started giving her a pillbox and took her meds to control them since she was overdosing on meds not taking them right, she never, knew what day it was or is, and is always irritable and stressed.

She started going behind my back early this year and took out payday loans and such and pawned things again in order to send money AGAIN to the same group of scammers and she doesn't believe any of us, APS officer, police, sheriff, banks, and anyone else that have told her it is a scam.  

She was court ordered for a week to a Mental Health Hospital after she became dillusional having a bad reaction to RX's her psychiatrist prescribed her.  This was done because she would not do ANYTHING willingly to help herself.

We have taken the keys away from her now which is the most difficult battle I am facing right now.  Her doctor has filed a medical report to the DMV recommending she no longer be driving after her doc gave her the opportunity to take a cognitive driving test and she failed all 3 areas miserably and we didn't even do the actual driving test and was not recommended to do so.

She tried to get violent with me for the first time 2 weeks ago after trying to hit me and ended up hitting my hand because I blocked her and she rared back again.  She kicked me out of her home.

She is blaming me for ALL OF IT and I do realize that this is what happens and that I as the caregiver will encounter these things.  However, it is VERY EXCESSIVE.  She has no ability to reason anymore but she is completely aware of her surroundings so that part of the dimensia has not kicked in. it is mainly with short term memory and things that are pretty bad. 

She is not "yet" a danger to herself living alone "as long as she does not cook" and she tends not to I think because I think she is scared to, so I am paying attention to that, but she has no "skilled needs" which make it reasonable to place her in care somewhere even though I have her on a waiting list already for when that happens.

She is now threatening me because she wants EVERYTHING back now in her control and me out of her life.  She wants her car, her keys, all of her finances, and she is trying desparately to apply for any and every credit card she can "but I have frozen 2 of the 3 credit reporting agencies as of now.  Of course, she is talking to another scammer and someone that is working on her again and I know she is headed down another path of destruction.

She is threatening an attorney, of course, she has no credit card to use because she was out of control ordering things overdrafting her account so I had to take  that away as well.

I am waiting on the DMV to send a letter hopefully REVOKING her LICENSE so I can put an end to that issue , sell the car , and get it out of the way.  

If she revokes the POA, or figures out how to, I am going to abandon her at this point because I can do nothing else.  My brother, who lives in another state, is a coward and won't step up to do anything because he doesnt want to deal with her and "doesn't care honestly" so I have lost respect and this has damaged our family and relationships on top of that, as well as damaging my own marriage which my husband wants me to just give it back to her and let her go on till she ends up homeless and on the street.

I am about ready to throw in the towel and I am only concerned if I do that, that if she gets in her car and drives and kills someone else that I can be held legally responsible and I am terrified.  I feel like I am too far in to back out now but I don't want to be part of this anymore.  She tells me she hates me and wants me out of her life and it breaks my heart that this is happening.  By the way, I am way past the emotional part of this as I have learned to work through that and not take anyting personal anymore because its the disease, but I am exhausted with the daily combativeness and it is affecting my health as well.

Any advice?







Posted: Saturday, October 5, 2019 10:38 AM
Joined: 7/28/2019
Posts: 2

Thank you all for your responses. I wanted to add some info to fill in the blanks. Yes she is on medication. For the first time in her 78 years I might add!  She is on an anti-anxiety med. I had to take the dose down to half as she was getting very weepy and feeling very sorry for herself. She is still very with it but tends to sit and stew or feel sorry for herself instead of being willing to go out and find friends or do things of interest. We did finally have a come to Jesus meeting about her constant complaining (to others mostly!) that she is a caged animal/trapped at home because we no longer allow her to drive. (Just recently she yelled STOP as I made a right on red, when I informed her that was legal to do, she then said Oh, they must have changed that law recently) lol  We went on vacation last week to the beach, meeting up with her sister and my cousins to have a girls week at the beach. It was mostly fun but did have lots of challenges. I overheard my Aunt (they shared a room) tell my Mom to stop going thru her drawers as none of Mom's stuff was in them. lol  

She flew up to my youngest brothers home for 2 weeks yesterday. That was kind of scary for me and I took alot of precautions but the airline was fabulous with her and we did the wheelchair assistance. They stayed with her and even changed her seating so she would be at the front and easy to get on and off. Once I told the staff she has early dementia they went into caregiver mode and they were great. I did only send her with a little bit of cash, much to her frustration, because she could still leave her purse behind.  No iPad (she left that on a flight a year ago and it took 4 months to get it back) No laptop, no Nook. Just a book and no carry on but her purse. All went well. I'm so relieved for the 2 week break! It will go fast I know but I'm relishing having the house to ourselves!!

My other 2 brothers are not much help altho 1 will take her for a few days at a time. The other is not any help at all. He doesn't even call me to check on how things are going.  I can't deal with the frustration of it creeping into all the other tough stuff I deal with so I just forget about him. lol  I had to let that go.  

I will move into a chat room and see who is there. Now that I have time to talk uninterrupted!