TL; DR: New here; The mother I knew and loved is already gone.

jbsiegel

Hello all, 

New here. Title says it all.

My mother got the diagnosis in 2019, although in retrospect, probably had symptoms in 2017 or so. She lives in an assisted living facility ten minutes from my house and we have 24-hr home health aides with her. I have a brother about 3-4 hours' drive time from me, who is supportive and comes to visit her sporadically. I realize I am among the *extremely* fortunate to have the financial resources to take the physical load off and a sibling who understands.

With all that said, it's still so hard to see the person you loved and revered as a child, and who was a friend, as an adult, become so helpless.  

My brother and I also have another brother who is physically and mentally disabled and has always depended upon our mother financially and emotionally. He is in a nursing facility 5 minutes from me. I am the health care proxy and decision-maker about everything for both of them. I also provide the sole financial support for my husband and our two kids (one in high school and one in college).   So, it's a lot, but the hardest part is feeling like this person I go and visit is a shell of the person who raised me.  It makes me sad when I have time to think about it, which isn't often, given the load. And that makes me feel guilty that I'm not spending more time with her.

Just looking for support for all the emotions - sadness, guilt, fear, etc.

Julie

buckeyenut

Julie,

I can totally relate to your guilt feelings. I too visit my dad who is a shell of a human that doesn't know me and I feel guilty for not visiting as often as I did when he was in AL. Our MC care giver has told me I have to start taking care of me. With that said our lives are equally busy with taking care of "others" and trying to stay sane! 

I find going on a walk and deep breathing helps when I begin to feel sad. I've also starting taking every other month a long weekend get away so I feel refresh to deal with the next curveball.

Hope this helps! 

AZGuy

Hi Julie,

The emotions you're feeling are all legitimate. Guilt, sadness, fear and sometimes desperation and anger. I keep bugging my wife's neurologist about medications or trials-hoping for that magic cure.

You have the added responsibility of not only a brother in a nursing facility but a husband and children at home. That is a lot on ones plate. Like buckeyenut said, you need to carve out some time for yourself to refresh and re-energize.

My wife was diagnosed in 2015. I'm full-time caregiver for her at home. I know eventually I will have to make the MC facility choice. The emotions come flooding in when I think about it. I want to know how she is cared for. And, I won't know if she's somewhere else.

This disease is horrible. Your loved ones, friends, family, etc. are all affected. It's difficult taking it all on yourself. Take time to care for you.

​fesk

Hi Julie. 

I'm sorry that you are dealing with everything but glad you are posting for support. I think the emotions you are feeling are normal. It's a terrible disease and heartbreaking to watch our loved ones continually decline. It's constant mourning of small losses. 

I don't have any great advice about how to deal with it. I struggle with it myself. I guess one thing is to try to still look for those moments of happiness when they come and give them the weight they deserve. Hold onto those. 

May flowers

I can relate to your feelings too. It’s my FIL, but he’s like a dad to me. And he had a kind heart and brilliant mind. Of course it’s even harder on his children to see him reduced to this state. I think some stay away because it’s so hard.

 Kudos to you for staying with it and giving her the support she needs. Please don’t be too hard on yourself for the time spent - any time is better than none and you have your own family to support. I know when we couldn’t visit my FIL for weeks when Covid went through the facility, we felt so bad, but he didn’t notice we hadn’t been by in a while. He was just glad to see us regardless. 

jbsiegel

Thank you all buckeyenut, AZGuy, fesk and Mayflowers for your replies.

You're right; there are moments of happiness .... but also shock and sadness.

My eldest brother calls our mom every day. She says crazy stuff to him - tells him I'm lying about various things, claims I'm trying to steal her things, etc.  He always calls me to repeat the conversations. We both know it's the disease talking, not her, and we talk to each other as a way of steeling ourselves for whatever comes next.  I take none of this personally; she's always overjoyed to see me when I walk in.  

Each new decrement in her functioning feels like a new blow, and we are both wondering how much longer before she fails to recognize us. She is already forgetting various close relatives. For example, nursing home brother has two adult children, and she couldn't remember how they were related to her. 

My mom (and her brother and SIL) cared for her own mother with Alzheimer's disease for 14 years. Developing this disease was her worst fear, and she told me many times she would never want to live like this, (though through the miracle of anti-depressants, she usually laughs about her inability to remember anything). 

And of course, my eldest brother and I are wondering about our own chances with this disease, given the family history. 

Ending on an up note....my mom's brother and SIL  (who live halfway across the country) are traveling to visit her this weekend. They aren't spring chickens either. I'm grateful that they are physically able to make the trip and that they want to see her.

Thanks again for all your replies.

SusanB-dil

Hi Julie - welcome to 'here', but sorry for the reason.

I think most of us feel the same if our LO ends up in this predicament with this horrible 'thing'. My mom has Masters Degree of Nursing, and MIL was a school teacher.  It is not at all easy when it isn't truly 'them' any longer. 

To my mom, I am her sister, and although MIL knows me most of the time, that is starting to slip. Brother has POA for our mom, and he found a very nice MC for her. mom and I were never close, anyway, but still would never want 'this' for her.  DH and I care for MIL, and it is difficult to see one who used to love to read, and loves kids, just not be the same any more.

yup - we are sad about it, fear if we are doing the right things for both of them... 

Can't dwell on what the future holds. We could live in fear of what the future holds, but choose not to, as we know that isn't a healthy thing. Prepare for possibilities, but hopeful is better...