At the beginning of this terrifying journey

GlassyGal

I am at the start of my caregiving journey. My mom was just diagnosed with dementia and possibly Alzheimer's, but no official diagnosis yet until she sees the next specialist. My dad is still alive, but has a lot of health issues as well, and they've just accepted the fact that they need outside help. 

Meanwhile I am not sleeping, neglecting my previous exercise routine, putting my boyfriend on the back burner - because I'm trying to navigate this. I realize none of these things are good and that I need to get back to them, and to therapy, and try to do my job to the level I have in the past (not sure how likely that is).

I guess most of all I just feel alone. I'm divorced. My brother lives in another state. Two of my three children are nearby, but they have lives, too. My brother is helping as much as possible from 4 hours away, but I am the one on the front line, and I fully accept that. They are my parents and I'd do anything for them. 

Next week we are interviewing a woman who is a memory care/elder care companion and caregiver. My dad thinks she is "overqualified" and I suspect she is, but, I also see this as a progression - at some point, my mom is going to need MC, even though she is functioning OK right now. She has no short-term memory, however. They definitely need help with household chores, but can still take care of their own basic needs. My dad's mind is still sharp, but as I've said - my mom's is failing, and she even realizes it. 

I'm rambling, but I needed to. I'm just feeling alone despite people close to me telling me they'll help any way they can. I know how this story ends and I hate it with every fiber of my being. My mom has changed a lot, and the changes are going to keep coming. 

Thanks for listening. 

mommyandme (m&m)

Welcome GlassyGal, so sorry you find yourself here though.  Lots of wise and supportive folks here. Keep coming back. 

My first thought after empathy is do you have all the legal matters in order? DPOA for financials and medical for probably both of your parents. 

My brother lives in another state but fortunately he takes care of all the financial stuff and I’m my mother’s primary hands on caregiver (my choice). I hope you can have a good working relationship with your brother.  This can feel like a very lonely journey.  After the initial pile of things to do and think about, please take care of yourself and your relationships. Good that your parents are agreeable to help. 

 I’m very very sorry you must embark on this journey. 

Family is forever

GlassyGal, when reading your post several things hit close to home. I am also at the beginning (about 4 months in since recognizable symptoms appeared) and am on the front lines with my father caregiving for my mother. Like you, I will do anything for my parents even if it means putting my own happiness/life on hold. I don't expect adulation for doing so as my parents have been truly amazing and deserve whatever I can give them. 

I know that my current lifestyle of working full time as an attorney and caregiving for my mother every moment I am not at work is not healthy, or sustainable for that matter, but I still do it. In your post you stated that you feel so alone and that really hit home with me. I have great friends and relatives who are constantly checking in on us, but I can barely bring myself to respond to them most of the time. I can be in a room with my mother (who no longer recognizes me) and my father and feel like I am a mile away from anyone. We still laugh as much as we can but I know it is just to mask the pain and sadness we are feeling.

My intention of responding to your post was not make it about my situation, but I wanted to let you know that you are NOT ALONE. I always viewed myself as strong and the one who fixed things...this horrible disease has put me in my place. Please use this forum as it is very helpful and reassuring to know that what you are feeling is normal when going through this long goodbye. Sending hugs and well wishes. 

LaurenB

Welcome to the group that no one signed up for.  It might be helpful to have the over qualified person work with your parents as the disease will progress.

-Lauren

Kathy21

You are not alone. I've been on this journey for a year and half with my mom.

prov1kenobi

I know how you feel. I have an 80 year old brother who has been developing dementia over the last few years. His dementia was exacerbated while he was being treated for covid in our local hospital. my wife and I then moved into his house to help him. ( his wife died a few years ago from cancer ). This disease is the worst thing I have ever seen. my wife is a nurse who has had alot of experience treating dementia patients. She says his case IS the most complicated case she hascever seen. Enough of my situation…my wife and I got help from the local Alzheimers Association. I also got help from people at church. I have a friend who’s husband has LEWY-BODY dementia. she has been a great source of help and hope. I hope I have helped. feel free to communicate if you want. We live in the middle of Alaska, where thevweather is not helping this situation

M1

Hi GlassyGal, one thing the other posters haven't mentioned yet but important:  do you have your legal ducks in a row?  You will need financial and medical power of attorney for both your parents at some point (your dad for other health reasons, your mom for the dementia).  If you and your dad haven't addressed this already, time to do it is sooner rather than later.  Just something that always is better taken care of early in this process.  Certified elder law attorneys are the experts in this area, listed by location at nelf.org.

This forum will help you not feel so alone, I hope.  

GwendolynD

Hi GlassyGal, I am also at the start of my caregiving journey.  My DM was just recently diagnosed with LBD.  I have 2 brothers that live in the area, but I am the one who is doing most of the caring for Mom at this time.   I met with a social worker a few weeks ago who strongly advised getting POA, and her Advance Health Care Directive completed and filed with her doctors.  We are working on getting that completed asap.  I have been overwhelmed and stressed these last few weeks.  But I just decided the other day that once these documents are done, we will know her wishes and we can focus on giving her as many good days as possible.

I am trying to make sure that I do everything I can to get my stress level down,  to continue exercising and stay in touch with friends.  I have read that caregivers can develop health problems of their own because of stress, and I saw that happen with a friend of mine.  So please don't forget to take good care of yourself too!

  

Anonymousjpl123

You are definitely not alone! And it sounds like you are taking all the right steps, at just the right time. I don’t know the answers about how to preserve any sort of balance in life, but I do know that acknowledging the disease and taking actual steps to get outside help was a game changer and life saver for me. All families are different but even those on the dysfunction end of the spectrum (mine lol) seem to find a way. It’s been a year since my mom’s issues became quite serious and it is only now starting to settle. I totally fell behind at work and with friends/personal life but I see a light at the end of this tunnel. Excellent idea to work with someone who knows these issues. And as others have said do try to get the legal stuff in order.

Remember you are only one person, doing the best you can, and if you are posting here you are likely being responsible and taking the right steps to get your parents help. Take care and use this forum it is valuable.

harshedbuzz

Hi Glassy-

I am going to pile on to what M1 said, the legal piece is really critical at this point. Going forward, you need a Plan B at a minimum. You need to be able to act for your mom should your dad die first or be incapacitated. You also need to be the decision maker for dad should he be able to make decisions. My mom almost died with dad acting as her medical advocate. You need POAs for both, perhaps Medicaid planning and maybe a trust. You should be dad's primary and can be succeeding for mom. You should also be touring both MCF and SNFs so you have an idea of which you want should you be called on to make a quick decision. 

You also need to insert yourself into your parents' financial situation in order to understand what resources they have so you can help make sound decisions in terms of where and when to allocate them. And I get that this is a challenge because you can't know the rate of progression for dementia, and you probably can't predict what sort of cart dad might need. I mention this because when my mom was pushing back on in-home care, a big part of it was the cost. Pre-covid she was paying just over $30/hour for a HHA from an agency that required a 15 hour/week minimum. Private aides can be less expensive, but then you have to sort out background checks and payroll. And even if you do your due diligence, please be sure to secure any valuables they have-- one of mom's HHAs stole mom's jewelry box. 

Your dad might not agree to it, but sometimes moving into a CCRC makes sense. They could move to an AL apartment where meals and housekeeping are provided with a plan to move to higher level of care when/if needed. One of the men in mom's support group lived in a very nice community; he was mentally and physically in great shape, so they started out in an IL apartment on the campus. As his wife progressed, she moved into their MC. Initially they ate together with friends in the main dining room, but as time went on he mostly joined her for lunch in the MC dining room. 

Do you have a sense of what stage your mom is in? FWIW, you will have a better sense than her doctors if you are spending 24/7 with her. Does she need a caregiver at this point or are you looking for someone to entertain her? Or would it make sense to hire in a housekeeper type individual to pick up the slack for chores your mom isn't doing easily anymore-- the cleaning, meal prep, laundry?

Good luck. It's a lot but once the pieces are in place, things should become more routine and a bit easier.

HB

GlassyGal

Thank you, all, for the messages of support. I do feel a little better knowing I'm not alone in this. I feel like I've got a decent start on the legal pieces, although we need to get them firmly in place. My brother is in town this weekend and we'll tackle some of it then. Fortunately, both of my parents do see the need for extra help - and while the woman we are interviewing may be overqualified now, it won't always be that way. It still feels really daunting, but this is my new reality, and I'm happy to have found this group.