Giving this a try

Mari23

Hi there, I’m new here and haven’t used any support group or forum before, but I would love to see if it will help. I’m 22, living with my parents and my mom (53) is deteriorating. She was diagnosed with mild cognitive impairment but I think my parents most likely played down her symptoms to the doctors because it seems much more severe to me. My parents are not very open about what’s going on and may be in some form of denial. I am really struggling to try and help my mom because she turns down anything I offer. She is unemployed and spends all day every day sitting in front of the TV, but couldn’t tell you what she watched if you asked. Its hard being so worried about her and watching her not even care.. She can’t work because she has trouble learning new things and gets lost when she leaves the house. I try to suggest that she reaches out so some friends to spend time with, or pick up a hobby of some kind but she always says no. I’m looking for support and maybe some ideas of ways I could get her interested in something, or at the least interested in going to see a doctor again. Thanks for reading!

French

Apathy is a major issue. Perhaps you could find an adult daycare. There she will be stimulated. Some PWD don’t want to go to adult daycare. You can tell her she goes there to help older people. My partner who is 52 believes that and likes to go there. So he is occupied 3 days per week.

M1

Welcome Mari, I'm so sorry you're having to deal with this at such an early age.  There are a lot of folks here who are dealing with early onset Alzheimer's, including a number of folks in their twenties.

French is right that apathy is a signature symptom for a lot of people, so the watching TV all day is not uncommon.  And you probably won't be very successful in getting her to engage in other things; not telling you not to try here and there, but don't be disappointed if it doesn't work, it's part of the disease.  Depression can play into it too, though, and that could be treatable.

Maybe you could get your dad (or siblings) to look at this site, it might help,   Good luck, I'm sure others will respond too.  Read a lot of threads, as there's lots of good information.  

Cecidlp

I'm sorry to hear that you are so young. I'm 27 years old, and I still think of myself as "too young to handle this". I've never thought I'd have to experience watching my dad slowly deteriorate. It's really hard. He had a period a couple of months ago where he was really apathetic and depressed and wouldn't get out of the house. Luckily now, even though he is much older than your mum and can't even walk, he started getting out of the house and going to cafés.

I don't know much about this disease, but maybe it's just a phase? My dad can't even remember that a couple of months ago he didn't want to go out and spent like 3 months confined. As I understand, Alzheimer has different phases, one of them is apathy, I don't know if it goes away on its own or how does it work. I'd stay around to read some replies.

Emily 123

Hi Mari,

It's a scary thing at any age.  Your parents may be in denial, or may be trying to protect you.  They may not know much about memory loss--It's not discussed much until it happens, and then it's like a ton of bricks. It could be that your mom has had enough of a decline that she can't learn new things and isn't able to organize the steps to do things. 

My mom will admit that her 'memory isn't that great' but I know better than to come out and discuss it as 'Alzheimer's'.  And it seems cruel to do that--she can't remember things for more than a few minutes, why tell her something stressful over and over again? Most of the forum participants would agree about avoiding discussing the memory issues with the person (or really, avoid discussing anything stressful). 

Can you approach your dad and tell him that you're worried for both of them? I think he would find that the 'Spouse' forum here is an amazing and supportive group, with much hard earned wisdom to share about coping and planning. He might want to take a look over there. No doubt at some point your mom will need to have another doctor's visit, maybe reading over there will help him move that way.

You will have more success luring your mom to do simpler things with very few steps as new information can't be retained. A lot of times, when memory is affected and the person is aware, they will start to interact less with friends. Their needs change, and they tend to be happier if there aren't a lot of challenges or new things to navigate. They may withdraw because they have trouble following normally paced conversations due to slowed comprehension, and possibly some decreased hearing.  Try to face your mom directly and speak slowly, to see if that makes a difference. 

 My mom plays solitaire for hours on her ipad.  Could your Mom do simple computer games, or easy adult coloring?  What did she used to like to do?  Sometimes if you can set them up to do something similar but easier it works well--like helping you cook by chopping some of the ingredients, rather than orchestrating the cooking, which is too many steps and sets them up for failure.  Music seems to be a universally popular way to engage as well--can you set her up with a pandora station or other playlist with songs she likes? I got my mom some of those cheap headsets and set up her ipad so she has 'big band' hour most days. 

These give good explanations. 

Stage 3  https://www.youtube.com/watch?v=TIkTO4d8YyI

 Stage 4  https://www.youtube.com/watch?v=coiZbpyvTNg  

Teepa Snow has great videos on you tube you might want to look at.

This was helpful for me to understand that this isn't just a memory issue, but that it affects reasoning, judgement, and executive ability:12_pt_Understanding_the_Dementia_Experience.pdf

Dig around the threads to get a feel of what some of the challenges may be for caregivers, and what options are out there for assistance-at some point your dad will need a break or some help-the caregiving for this can be like quicksand and it's easy to get overwhelmed before you know it. It is a struggle to maintain a life balance. Know too that you have your own life and while you can help, you shouldn't be THE backup care plan. If you start to get overwhelmed (and you may want to do this even now), set up an appointment with a counselor. 

 I know this is a lot to take in.  Try to love on your mom as much as you can and take pics and videos of the good times you'll still be sharing. My Mom still does email, so I take random pics of us and cute things I see and send it to her.  We pull out the old family photo albums and I get the scoop about her side of the family too. That might be something you could do with your mom, and write it down or video it.  It will get harder for her to remember things as time goes on.   She might not be able to remember what she had for lunch today, but she can probably tell you some great stories about growing up!  Just go with the flow and agree with her if it seems like she's telling you a fib--she's just trying to make sense out of her day. Another thing you may run into is repetitive questions or circular discussions. I cannot emphasize enough...don't argue, don't correct, don't try to use reason--just go with the flow and agree.  (It's really hard to do at first, though.)