Just reaching out to check in

Jackie_K

Hello all, I haven't been on this forum in several months. I feel like I have been on autopilot and just trying to get through the days. I don't have a specific question here really, just wanted to reach out to connect with others who are going through the same thing in the hopes that I will feel less alone.

About me: mom was diagnosed last summer. My siblings and I suspected it for about a year, but she kept cancelling her testing appointments (she said she was "fine," I know she was just scared). At that point, I became more involved with her PCP, and we worked together to get her to an out of network provider that was only a 3 month (vs. 12 month) wait. For a while it felt like we would never even overcome the first hurdle of getting a diagnosis.

We set up her neurology appointment when she was first diagnosed, and if you can believe it, that appointment was just last week. Appointment wait times are outrageous right now. The appointment was so helpful, but it was also a very stressful and sad day. They knew just what to ask to highlight her deficits. It was hard to see my mom answer with utter confidence that the year is 2014 and that Jimmy Carter is the President. It was hard to see her cry when they asked her certain questions. She is so tiny and frail right now and it's just painful to see my only living parent in such a vulnerable position.

The last year since her diagnosis has been full of so many ups and downs. We were able to wrestle her car away from her. It took months, but we finally got a POA in place. Someone on this forum suggested we manage her meds with the HERO machine, and it was a game changer once we finally got that in place. There have been countless scares and screaming phone calls from her at all hours of the day and night - I seem to be the target she chooses when she's in a rage. There was a particularly weird and alarming situation where she buried a dead squirrel and then unburied it a few weeks later (the logic for doing this was airtight in her mind). Somehow, we have adjusted to this as our new reality, and we continue to learn and adapt as we go.

How is everyone else coping with the long-term effects of managing this? I will be honest that I am struggling. I have my own health issues that I have not been able to really focus on (I am a cancer survivor) as I am so busy managing my mom's care, I have put on a lot of weight even though I remain active and exercise regularly, and just generally feel exhausted. I also feel a lot of anger and frustration that the system is not set up to provide care for chronic conditions like dementia - every single thing seems to be an uphill battle. We are still in the early stages of this and I am having trouble wrapping my brain around doing this for years to come, especially since there's no hope of it getting better. I hate that I am constantly feeling tired, frustrated, angry, or sad.

Anyway, just reflecting on the last year and venting a bit. I hope everyone else is hanging in there and doing okay. Have a good Sunday night everyone.

M1

Hi Jackie. It sounds like she is still living alone? I would worry that's no longer a safe situation, the squirrel being only one example. Do you have a plan B?

SusanB-dil

Hi Jackie - I hear you. ((hugs))

I'm glad I knew MIL before 'this'. You are so right - it is hard to see our LO so frail and 'out of it'.

Same here with year and president, but we've gone back a bit further than even last year, now. Last year (in 2023) it was 2010 and Clinton the president. Just last month, she said she didn't know who the president is and the year is 19 - - . She couldn't come up with the rest of the year.

Good for getting mom off the road. Yes, that can be tricky.

Hang in there - you are not alone.

Jackie_K

M1, yes, we are working on getting her into assisted living.

Susan - thank you for the hugs and for sharing about your MIL!

Anonymousjpl123

@Jackie_K you are definitely not alone! I was shocked at how hard navigating the doctors and diagnosis was. I thought we as a family were relatively smart but it was such a maze. Like you, when we finally got a clearer and more thorough diagnosis it helped but it is also overwhelming.

Speaking for myself, the beginning of this journey was utterly harrowing and my own health, job, life felt really on the back burner. I’m still struggling to get back on track but with finances and care in place it is now easier.
Pace yourself: this is a marathon not a sprint. Education is your friend. And don’t hesitate to get lots of support. We need it.

JMP

> @Jackie_K said:
> Hello all, I haven't been on this forum in several months. I feel like I have been on autopilot and just trying to get through the days. I don't have a specific question here really, just wanted to reach out to connect with others who are going through the same thing in the hopes that I will feel less alone.
> About me: mom was diagnosed last summer. My siblings and I suspected it for about a year, but she kept cancelling her testing appointments (she said she was "fine," I know she was just scared). At that point, I became more involved with her PCP, and we worked together to get her to an out of network provider that was only a 3 month (vs. 12 month) wait. For a while it felt like we would never even overcome the first hurdle of getting a diagnosis.
> We set up her neurology appointment when she was first diagnosed, and if you can believe it, that appointment was just last week. Appointment wait times are outrageous right now. The appointment was so helpful, but it was also a very stressful and sad day. They knew just what to ask to highlight her deficits. It was hard to see my mom answer with utter confidence that the year is 2014 and that Jimmy Carter is the President. It was hard to see her cry when they asked her certain questions. She is so tiny and frail right now and it's just painful to see my only living parent in such a vulnerable position.
> The last year since her diagnosis has been full of so many ups and downs. We were able to wrestle her car away from her. It took months, but we finally got a POA in place. Someone on this forum suggested we manage her meds with the HERO machine, and it was a game changer once we finally got that in place. There have been countless scares and screaming phone calls from her at all hours of the day and night - I seem to be the target she chooses when she's in a rage. There was a particularly weird and alarming situation where she buried a dead squirrel and then unburied it a few weeks later (the logic for doing this was airtight in her mind). Somehow, we have adjusted to this as our new reality, and we continue to learn and adapt as we go.
> How is everyone else coping with the long-term effects of managing this? I will be honest that I am struggling. I have my own health issues that I have not been able to really focus on (I am a cancer survivor) as I am so busy managing my mom's care, I have put on a lot of weight even though I remain active and exercise regularly, and just generally feel exhausted. I also feel a lot of anger and frustration that the system is not set up to provide care for chronic conditions like dementia - every single thing seems to be an uphill battle. We are still in the early stages of this and I am having trouble wrapping my brain around doing this for years to come, especially since there's no hope of it getting better. I hate that I am constantly feeling tired, frustrated, angry, or sad.
> Anyway, just reflecting on the last year and venting a bit. I hope everyone else is hanging in there and doing okay. Have a good Sunday night everyone.

Hi Jackie,
I'm just starting on this journey too. Nice to meet you and can relate. I look forward to supporting one another.

ValsMom

Hi Jackie:

I've been on this same journey with my Mom since 2017 (official diagnosis). I haven't been on here for quite awhile, so I say that your background is mine…thought I was reading my story again. Bringing her to my home in another state was the fight from hell…oddly enough, she said to me before her second stroke…if she knew that she would be care for like this, she would have done it sooner…🤣 She does not recognize her home now. To comment a little on how 'I' felt at the beginning….my thought was here we go again. You see, my dad also had ALZ and passed away 8 years ago. I didn't have to care for him…I tried, but his witch (2nd wife) didn't want to let go of his funds so that I would take care of him properly, so I had to let go and let God. Any who, it runs deep on both sides of my family. When I first noticed the signs in my Mom, I hoped that I wasn't seeing what was happening, each time I visited her, but I knew it was serious once she told me she was retiring. The truth was that things were happening at her job and no one said anything. Mom was married to this job and never took care of herself and was always stressed out, due to her doing the jobssssss of 4 people for over 15 years. This definitely contributed to her mental demise and they just threw her out like trash. (more to come on that) It was all said and done before I knew what was happening and got involved. She is a really proud woman and never wanted any help from anyone until she got into something she couldn't get out of. As the disease worsened, she became someone i'd seen but 10 times worse to me…not my brother. So I definitely understand how you feel on that end. I couldn't get her to do anything without calling him and him telling her to do it….Including the POA/Adv Directive, etc. She thought that I was going to take her money and put her in a home. I couldn't talk to the mortgage company for somethng she did, because she wouldn't give me POA. When she got that call…she gave it up, but not without a fight. You talking about frustrating as all get out, but I kept caring for her as much as my body could stand between 2 different states. I even got that medicine dispenser for her and had to come home every other wknd to fill it up, because she would miss her meds or straight up not take them. Then it was the issue of her being alone and cooking….you're talking about stressful and not being able to see what she was doing…we lived in a rural area… I didn't handle this well and it did take a toll on my and my family. Mind you, I was receiving calls from people who still lived there and saying that Mom was on the wrong side of the road and at times looked dazed. Then Thanksgiving 2019, went home to pick her up for the holiday and the garage looked like someone took a metal scraper and ran down the inside of the garage…then I looked at the car and it had a huge line down the side of it and said That's It!!! Called my brother to let him know what happened and what was going to happen and the rest is history. However, this had to be strategically done because she was still very much a fighter and fully expected to go back to her home. She was ready to go after the holiday, then we had to find a way to break it to her a month later….you're talking about a fight!!! She began calling the contacts on Grandpad (jumbo tablet for seniors with vision problems) to tell them that she hated me and that i was being mean to her and wanted to leave the house. Mind you I would be downstairs listening to her talk about me like a dog. No one ever questioned what I was doing, because I had already told them, any time you want to come get her and take care of her, just let me know…that ended that part!!! Even my brother.🤣🤣

Jackie, I've had my private moments watching her. We were never that close…in fact we fought all the time, even as an adult. But my brother could do no wrong and he did do her wrong… I had those moments a few months just before my father passed…he was a dirty somebody and a rollin' stone before his illness, but I was/am a daddy's girl. I attended my husband's grandmother's funeral…never met the lady and cried more than the family did. Everyone was confused and so was I, until my husband asked me what I saw up there. I told him this was Dad's funeral and all I could see was Dad up there in that casket!! It wouldn't be long now. Needless to say, the family was amazed. This was April..I saw my Dad one last time over July 4th weekend. My dad passed in September. God gave me the ability to grieve in private before his passing because of what I was about to deal with as the eldest sibling, and I would have to take charge, which I did, even with his remaining siblings. Mom could not attend his funeral despite the nasty marriage they had. She said that she didn't want to see him like that, and we did not force her. She even had the family repass at the very house that I talk about selling now.

I haven't had those types of moments about her..and maybe this will be different. I think it helps that I am a gardener and my focus is on slowing down or wiping out this horrible disease through diet and exercise. I have been able to get her off of 6 meds because of what and how we are approaching this thing. She would not be here had I not brought her to live with us. She stopped eating clean and good food. Now she eats 3 square meals a day. Before her recent stroke, she started forming sentences that we hadn't heard in almost 5 years from her. After the stroke (some time in December 2023), she is back on her routine and is speaking so so much better. This stroke was a big one and it took a lot more of her speech and vision. To hear her using profanity and fighting the sitters now and us, is a good and bad thing. She is a feisty little woman who has always had a temper (at least with me) and it is back with a vengance. I take her out in the garden with me because she loves colors and it/I reminds her of her mother, from whom I caught the gardening bug. So I guess to answer how do we deal with the stress of it all…you have to take it in chunks. I think it is important that you grieve who your person used to be…it does help take a lot of the sting out of this equation. It is so hard to see them as someone completely different, but if we do not, we and they will suffer. Try to capture all the moments you can with them, because this is another chapter of their lives…not ours. She never really like little people, but now with her great grands…she loves them to pieces. They take care of her when they visit and are taught compassion, just as she did for others in our hometown. She was a true missionary fought and fed the less fortunate and the more we realize that they are just as lost in their minds/bodies and are afraid of what is happening to them, the more we can reach out and do something to change our thought process. Sure, I cry, but then I think how hard this is for her and how hard it was for my father and then I look over at her and I smile and am glad that she still calls me by my name. I feel proud to think that we may have a hand in slowing down the progression….my garden is larger than ever.

You are never alone!!

ValsMom

Jackie_K

@Anonymousjpl123 - thank you so much for your kind words and for sharing your experience. I am a Director of Ops and do project management for a living, and I often think about how, if this is so overwhelming for me, how must it be for everyone else facing this? There is so much to learn, do, and manage, from getting legal and financial affairs in order to navigating complicated family dynamics. On top of it all, I feel like I barely have time to actually feel what I'm feeling - there is too much to think about and do otherwise. It feels like my mom is dying in slow motion, and I am forced to watch it but not permitted to actually feel anything about it every day…

@JMP - I am so sorry to hear that you are starting this journey too. I am glad that we have this forum to support each other and ask questions. When we were struggling to figure out what was going on with my mom (pre-diagnosis), I found this site to be a HUGE source of information. I am a planner and not having all of the information was such a source of stress, once I started filling in the gaps it did help. I hope you will continue to come here and get the support and resources you need.

I would also encourage you to call the ALZ Association if you haven't yet and need specific resources - they were incredible with helping me find an attorney to get our POA set up, and helped me find some creative solutions when we were struggling to get her in for testing.

@ValsMom - THANK YOU so much for sharing your story, it means a lot! It sounds like you are taking amazingly wonderful care of your mother, and she is so lucky to have you! There are for sure a lot of similarities here. I love my mom but we have always had a complicated relationship, I guess maybe it's just that way with a lot of mothers and daughters... I was also much closer with my dad, but he died almost 30 years ago (car accident). Right now, her illness is bringing to the forefront so many complicated things that I think we all need to confront when it comes to family dynamics. And, not surprisingly, she is talking a lot more about my dad than she has in years and still processing some of that grief, so it's bringing up a lot for the rest of us as well. I am doing my best to take it one day at a time.