Early Onset diagnosis for mother / feeling overwhelmed

theyounger

Hello, 

I'm new here, although I've attended a few support group meetings through the Alz Association these past few months.

After almost two years of arguing with my mother to get assessed, she's just been finally diagnosed with dementia, and it's progressing rapidly. She can barely speak and she's eating very very little. She can't eat solid food without gagging, and has lost a lot of weight as a result. She doesn't shower unless pestered. She couldn't answer the neurologist when she asked her who the president was or what the date was. She remembers my brother and I and is insistent she's completely fine, but she's a completely different person now.  She currently lives with my brother, but we're looking into more intensive care, because he has to work and it's too much for him. I'm trying my best to help, but I live in another city. I'm currently visiting them to help figure out next steps for our mom. 

I'm 22; our mother's dementia is early onset. This condition is just moving so fast. I feel completely overwhelmed and underprepared to handle this situation. We're getting some help from family, but they all live out of state. My mother is unmarried. 

I guess I'm just looking for advice, in general, and especially for figuring out what kind of facilities we should be looking into. And how do we talk about moving her into one with her, when she still refuses to acknowledge there's anything wrong? Are there any other young people out there in this situation? It feels really lonely to be in this position. 

Daughter80

I’m so sorry. You are so young. I feel so young and I’m 40. My mom was just diagnosed a few months ago and it is so weird to go visit and see people with dementia and none of them look like my mom. And any time I see an elderly person out and about or driving I can’t help but  think that it just isn’t fair.  All that to say I understand some of how you are feeling. 

Everyone on here advised to get medical and financial durable POA as soon as possible. And they talked about a condition anosognosia where a person with dementia literally doesn’t know that have any limitations. 

I guess all I could say is that the family members that are able to discuss and decide with is best for your mom and each of you should be the ones to make the decision. 

I’ve heard people take their LO for a visit and bring their things and leave them. Some let them know on the way. Some say don’t visit for a while to give them time to adjust.  Some of the PWD become upset, some adjust quickly and others just don’t. I read that medication was advised. I would assume each person is completely different and you will know you mom best and maybe some of the things you use to get her to do things you know she needs will help. I really can’t advise on this specifically since I haven’t gone through it, but these were some of the things I read on here. 

Prayers for you and your family as you go through all of this. 

M1

Welcome, and I'm so sorry to hear that you and your brother are dealing with this at such a young age. Yes, there are a number of folks here in similar situations. A few bits of general advice: if you don't have legal and financial affairs settled already, do so asap, one of you needs durable power of attorney and power of attorney for healthcare. Elder law attorneys can help with this, as wewas advising about how to plan financially for institutional care (nelf.org is where to find listings).

Read up on anosognosia too, that's the feature of the disease that prevents her from recognizing her deficits. Sadly very common.

If she is having swallowing difficulty already, she is advancing rapidly. Hospice evaluation may be indicated. 

Again im so sorry. Im sure others will chime in.

sandwichone123

You have a lot on your plate at an early age, and so does your brother, I would assume. Others have offered important information about legal issues, but I want to address how you discuss the move with your mother: don't. She is not able to think logically and reason things through, and there's nothing to be gained by upsetting her. When she moves, she will be upset by the change, and then she will get used to the new situation and it will seem normal to her. There is no conversation that will change that, because new things are hard for people with dementia, so the best bet is to make only one change: the move, and then allow her to become accustomed to the situation.

Shop for a new place, make financial and legal arrangements, then make the move. I hope you have people who are able to advise you locally, but do the best you can with her placement and remember that your responsibility right now (and your brother's) is to build your own lives. Be the person that would have made her proud.