I am so scared

sdgz · August 25

I'm so scared of what this diagnosis means for me and my mom. I've worked with a number of Alz patients while working in emergency psychiatric departments or adult psychiatric departments. It was brutal. Devastating to their kids and devastating to see their moments of clarity, briefly realizing they are losing their footing in reality.

My mother is pleasant, but can be vicious. She learned how to be patient and understanding, but her childhood survival instincts have come out before and it's intimidating.

I'm worried about taking away her independence / freedom before it's necessary or after it's too late. She's always been private with her thoughts and struggles, doesn't ask for outside opinion when determining her path forward but is a social butterfly who charms everyone.

I don't want to diminish her. I don't want to ask her to be less. I don't know what the right answers are and don't want to cause damage.

We love each other and have worked very hard to get along and find common ground. That said, I know this storm will be unrelenting when it hits. My dad told me to take care of my mother before he died. So... here I am, shaking in my sneakers and paralyzed in fear.

We're taking the steps (powers of attorney, driving assessment, planning for supportive living when needed) but the thought of having to tell my mother she isn't allowed to do something makes me nauseous.

JulietteBee · August 26

I am so sorry to know that you are beginning to feel the head winds. I wish I could lie and tell you it won't be brutal, but it will be.💔

On my dad's death bed, my sibling and I were also told to take care of our mom. Unfortunately, my sibling has died and the weight of this enormous responsibility is now squarely upon my shoulders.

My mom started showing mentation issues about 3-5 years ago, but got the official diagnosis in December.

What you need to remind yourself of, is this, YOU are not taking away her freedom or independence. Dementia is doing so!

Dementia has made it unsafe for my mom to drive. Her car was therefore given away. Dementia took away her ability to manage her finances. Now I manage them for her. Dementia has made her a prime target for theft and scams. That forced me to safeguard her debit card and other valuable papers outside of her reach.

Dementia, and Dementia alone, has caused my mom to have to move out of her own house and into an independent living facility, which offers greater oversight than if she were independently living at home.

As someone on here said, we are tasked with keeping our loved ones safe, not happy.

You have found an amazing online family of supporters. Lean in to their advice, expertise, and emotional support. You are not alone!🙏🏽

SDianeL · August 26

welcome. So sorry about your Mom. We understand what you are facing. Your Mom’s care and safety are the most important things. She can no longer reason. Read the book “The 36 Hour Day” which will help. Learn to redirect, distract and fib to her if necessary. Your relationship will change from mother and daughter to patient and caregiver. It won’t be easy but you must take charge. Don’t second guess your decisions. Come here often for support or to vent. 💜

Quilting brings calm · August 26

There’s the saying: if you seen one dementia patient, you’ve seen one dementia patient. Meaning Everyone is different. Your mom may never exhibit some of the symptoms. It’s best to plan for the future, but also take one day at a time. You are doing everything right

djtcoll · September 8

https://alzconnected.org/discussion/comment/251687#Comment_251687

This is so helpful for so many of us early in the journey. Thank you for posting.

KAS4403 · September 9

I feel like I am in the same position. Except my mom is divorced, lives alone and does not get a long with my sister so a lot is left on my shoulders. My mom constantly in the evenings becomes upset and cries and then decided she does not want to see doctors, or that I am trying to control her money to save it for myself when she is gone. When in reality she has almost nothing and we would like to save as much as possible to keep her independent and in her own home. I just get overwhelmed with the whole situation. I do not think I can have her come live with me and putting her somewhere is financially not an option either at this time. She currently drives and pays her own bills but I fill her medication box weekly because she wasn't taking them. Just do not know how to navigate this situation as it is unfolding fast.

krowe104 · October 28

Hi - I feel like I am in the same boat as you. My mom was just recently diagnosed, so we are just starting this journey. I am an only child and my mom is divorced/never remarried, so it's falling on my shoulders 100% too. I am terrified of the road ahead - it's all on me to be the caretaker, as well as the friend, therapist, etc. I am doing all I can to keep her independent, knowing it's going to be a long road ahead. I just wanted to say - I totally feel you and your worry!!!!!

SDianeL · October 29

https://alzconnected.org/discussion/comment/253121#Comment_253121

welcome. You will get more replies if you post a new post. Use the plus sign at the bottom of the page. If your Mom has been diagnosed with dementia she should no longer be driving or paying her bills. If she’s in an accident the insurance company could refuse to pay and she could be sued. She is vulnerable to scammers. Take away credit and debit cards. Get a low limit card if she needs one. She should no longer be living alone. She could start a fire or wander off. It’s not safe for her to be alone. Read the book “The 36 Hour Day” which will help you understand the disease. Look up the chart for the 7 Stafes of Dementia that lists behaviors within each stage. Search online for dementia caregiving videos by Tam Cummings and Teepa Snow. If you haven’t done so already you need to immediately see an Elder Care attorney and get legal papers in order. DPOA, Medical POA & HIPPA forms while she can still understand what she is signing. Tell her you’re doing yours and she should do hers. Come here often for info and support.

H1235 · October 29

This is very tough. When you look at the staging you will notice there is a rough age equivalence listed at each stage. I use this to help justify some of my decisions. You wouldn’t let a 10 year old drive, live alone or manage money. So it makes no sense to let our person with dementia at that age equivalence to do these things.

DBAT.pdf

Anonymousjpl123 · October 31

Agree with @Quilting brings calm - you are doing all the right things, including focusing on the practical stuff (which is critical). Good solid advice from everyone on this thread.

You are right: the emotional roller-coaster is relentless, I'm sorry to say, but there is a LOT of support out there and this small community of those of us living through it has been a real life-line to me. I hope you will find the same.

I am so scared

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