Here comes my 19th nervous breakdown...

aopagirl4444

I'm the designated, default caregiver for my mom who was recently diagnosed. They told me what she has, but little else. I have no idea what it feels like in her head, and I expect her to to interact with me like she did just a year ago. She's only 84, and things have been moving very quickly with her loss of cognitive functions. I don't even think she's processing what I say to her resulting in more frustration as I realize we are NOT in this together. Today, while trying to do my own work on the computer, her myriad financial and person business issues took control of my day. It was cancelling her $280 a year Sirius xm radio subscription that she can no longer afford, then signing her up with SSA so "she" could handle her account online. The banking, the doctor appointments, etc. I really thought I was going to break down, but I yelled at her instead. Then I felt worse because she is doing the best she can. I don't understand this disease and I'm the only one who has stepped in. It'll get better, right?

M1

This is a good place to learn so that your expectations are realistic. Many recommend a link to "understanding the dementia experience." Not her fault, of course. Only 84? Not sure what you mean by that, that's getting up there in my book.

Battlebuddy

   Although all of the Alzheimers journey can be challenging, I found the first six months to be the most stressful. I think that is partly because everything changes- finances, medical etc. You go through a huge learning curve and have to take a major shift in the way you see and interact  with your loved one. After that it all becomes the new normal and you can get into a new routine that is helpful and calms you. 

   You got this! One step at a time. It’s a marathon not a sprint and you will need to pace yourself. There is a lot of support here for you and many people who are ahead of you on the road and can give you great advice. It doesn’t have to be perfect. Good enough is good enough in Alzheimers world.  

LaurenB

aopagirl4444, you are already on the right track.  You are correct that your mom may hear what you are saying, but not comprehend it.  Good for you for helping to limit her expenses in anticipation of what she will need next.  Don't worry that you have to tackle it all at once.  While I would prefer to tackle it all at once, it is easier for my mom to not notice if I do it in small increments.  Just quietly do it.  Additinally, it is harder in the beginning when you need to set up and keep track of lots of appointments.  Once you switch to online methods for banking as well as communicating with the doctors, it is much easier to quickly send a message and not have to wait on the phone.  The hassle is in the beginning with taking over but it is worth it.

AngieCsepi

Oh boy do I know where you are coming from! I also care for my mom with Alzheimer's and being the only one who does, I tend to lose it once in a while. I work a full time and a part time job and my mom takes up all the rest of my time. I got frustrated and yelled at her the other day. She was relentless yelling that I am not doing enough (!!!!). Along with Alzheimer's, my mom also has delusional disorder with bipolar. Taking care of her is killing me slowly!! Finding this forum is helping to see that other's are in the same boat as me. Misery LOVES company! I wish you well. We are in this together. I am sending positive vibes your way.

Jo C.

Hello aopagirl and a very warm welcome to you.  You have found a great and safe place to land where you will be understood, supported and will find much useful information from other Members.

One of the best things you can do, is to use Google and find the pdf writing, "Understanding the Dementia Experience," by Jennifer Ghent-Fuller.  it is the bible of information for those new to dementia and for refreshing oneself.  It is excellent and explains SO much about the various behaviors, the whys, and stages our Loved Ones (LOs) experience.

I would love to put the link for that here, but it overruns the page and causes it to hyperextend beyond boundaries.

We are all new at this at one time or another; there is quite a learning curve that is like a ladder; on the first rung and then up and up as we get more knowledge.   I am sorry for what happened with your mother's significant other, that is certainly sad, but he was probably not able to provide the kind of care and oversight your mother needs. 
 
 The best thing to do is to have a good dementia specialist as part of the healthcare team. No kidding on that one.  Having an accurate diagnosis for actual type of dementia is key.  There are multiple different kinds of dementia of which Alz's Disease is only one.  This is crucial as meds for one type can actually be contraindicated in another and that can make matters worse if misprescribed. A good Neurologist who sees dementia patients as a routine part of his/her practice is excellent at accurately diagnosing for type of dementia. Our primary care MDs are awesome at so much, but they are not on the cutting edge of current dementia dynamics; still, they are important for our LOs physical needs.

 Also, if your mother does not have adequate legal paperwork and she can still sign her name, it would be a good idea to contact an Elder Law Attorney to get the paperwork done.  That would be at least a Durable Power of Attorney for Healthcare as well as a DPOA for Finance, and a HIPAA Waiver naming you.  Sometimes we also benefit by hearing what is involved with  a Guardianship should that ever become a need. Elder Law is best as many general attorneys just do not have the myriad bits of information elder law requires.

We soon find arguing, insisting, pointing out, etc. is counterproductive with our LOs.   We also learn to use "therapeutic fibs," when necessary to be able to achieve what is needed - for me, that was difficult, but when I saw how much it helped prevent meltdowns it became a good tool in my caregiving toolbox.  If behaviors abuptly go over the top, always good to have a check done for a "silent" UTI.  No pain or burning with these, but often a significant change in behavior that can be quite dramatic; this is common for many of our LOs.

You will like all of us, learn a bit by bit and before you know it, you will be an "expert," also the Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are wonderfully supportive, have lots of good information and can often help us with our problem solving.

It is good to meet you; we are all here in support of one another and that now includes you too. Best wishes coming your way from one daughter to another,

J.

Jane Smith

Hello and welcome. I’m sorry to hear about your situation. 

It’s very difficult to be a caregiver for someone with dementia. There’s a lot to learn about the disease and it’s a tough learning curve, or at least it was for me. So please don’t be hard on yourself. There is nothing easy about it. 

This might be helpful reading:  https://www.smashwords.com/books/view/210580

I agree that learning to adjust your expectations, to their limitations, is really, really hard to do.

Will it get easier or better?  

Sadly, the disease is progressive, so no, she won’t get better or recover. Some things get easier because you only have to do them once, like some of the paperwork.  Or you get into a routine with online banking/paying bills, or get a system set up for paperwork, or whatever. 

The hands on caregiving might get easier in the sense that you will get more experienced and more practice the more you do things.  It might get easier as you develop a routine and strategies to deal with the issues dementia brings. But caregiving for someone with dementia is not an easy job. 

It’s never easy, no matter what age they are or we are, to see a parent/family member/loved one with a serious, degenerative disease. (My mother is 78 and is in late stage dementia. My father died at 56 after five years of awful health issues.  I have a 76 year old aunt in early to mid-stage dementia and a 73 year old uncle with leukemia. It’s all lousy. I’m sorry.)

LicketyGlitz

First of all, mad props for the Rolling Stones reference!

Secondly, no, it ain't gonna get better. But you will learn better coping mechanism within yourself and with the help of the folks on this forum and other online groups you will find (check out the group Dementia Through Daughters Eyes on FB, any Teepa Snow video on YouTube).

It sounds like you and your mom have kinda skimmed over the care partner phase and plunge right into care giver. It's a tough transition to make, or at least it was for me, my assumption that I was helping my mom becoming the realization that I am doing it for her because she no longer can. And yeah, I have full days of Mom's business that knocks anything I was going to do for myself right off the to-do list!

So cut yourself some slack, this is a BIG disease, with a learning curve that never stops. You'll do more yelling but you'll also find ways to do way less yelling. This forum has been a godsend for me to acquire new skills, I hope you have the same experience.

Good luck to you and your mom! It's a tough, tough road but we have also experienced a lot of laughter and love in between the horrible.

jfscrub

Aww geez. I'm afraid to tell you this, but realistically, no, it won't get better.  2 1/2 yrs ago, mom had to leave her living situation and so she moved in with me. It was 10 months of what you are going through now.  I'm a pretty able bodied 66 yr old now and I realized then that not only could I not handle it emotionally, but physically I was putting myself at risk with the numerous times she'd fall as well as her incontinence which was a nightmare in itself.  I just couldn't do it all by myself.  It took a while, but finally my sibs and I were able to find her an appropriate assisted living facility. Now, she is cared for by younger folks who know how to manage the day to day and make sure she gets to her doctors appt's and is safe. I did have to take over her finances, but that has worked out okay. At least now she's not overdrawn, which was a $600/year issue. She's been in the facility for 1 1/2 yrs now, and although it's not the best situation in her mind, she is getting safer care than I could give her. Her dementia is getting the best of her, but she's still able to enjoy some of her daily life. My siblings and I talked about this about 5 yrs ago and realized it would never "be better".  Unfortunately, you only have control over the living situation and what kind of care she gets.  Also, keeping active in her life is the most important thing to helping her to participate.  I call and talk with her every day. My sibs, not so much, but they try. 

I do urge you to begin the search now, because there's always a very loooooong wait to get into a good facility. And you will be better for it, and so will she.  Good luck and take care.

sweetbaby

Hey! I can kind of identify with your experience. I am new here and hoping to learn a lot.

sweetbaby

Jane Smith! Thanks for sharing the link.