Lost worried and scared

Deepbluetears

Hello everyone new here.

I have some questions and would love some input. My mother was diagnosed with dementia after a very bad TBI, I have been her only care giver for almost 3 years. Meds have been changing and it don’t seem like anything is helping anymore. Recently in the last couple months now I can hardly get her to eat and when she’s not in bed she’s glued to my side and I mean GLUED. She says she needs to be next to me or she has anxiety, she’s never without anxiety. She don’t even know night and day anymore.

Has anyone dealt with the separation anxiety?

Has anyone dealt with family and friends of the loved one who just disappear and don’t even check in? I feel like they can’t handle the change but dang that seems like a lame excuse!

How in the world do people get a stage of the disease? Her Drs. Always beat around the bush and I never get a straight answer.

And lastly how do you get over the guilt of looking for help? I NEED help but gosh I feel terrible.

Thank you to all who have any advice ❤️

sandwichone123

Welcome, Deepblue. I'm glad you found us. As you read over the board, you'll find that these are recurring themes, and you'll start to feel less alone. Yes, the theme of being abandoned by family and friends is also recurring, but the people here who have been through what you've been through can help, either by offering potential solutions, or just by understanding and sharing the moment.

You'll find the folks here are far more useful than doctors when it comes to information about what to expect next or how to deal with the problems of today.

I can tell you that using the tools available to you for caring for your loved one is ok. If you use a walker, or a special dish, or better laundry detergent, those are all tools to help you better care for your loved one. Trained assistants in you home or in a facility are also a tool that may be helpful in helping you care for your loved one. Whatever tool helps your loved one get better care is ok, and you do not have to feel guilty about it. Remember that you care for your loved one, so you MUST also take care of yourself, because you are yourself of value but also if you are injured or ill who will care for your loved one?

SSHarkey

We ALL need help! We can’t do this by ourselves! There is no shame in needing support! Read everything you can about the disease. Educate yourself so you won’t be blindsided. Find a local support if there’s one in your area. If not, find a therapist/counselor. You need someone to talk to. The group is a wonderful source of information and help. But we all need someone flesh and blood to share our experiences and feelings.

M1

Adding my welcome; and agree completely that there is no reason to feel guilty in asking for help. Have you considered a hospice evaluation? You don't need a doctor's order to reqeust it, you can call the agencies yourself and they will come and assess her. Hospice for dementia is a bit different than in other illnesses, there's not a rigid six-month timeline. Probably worth asking, and if it's too soon they'll tell you that.

Cecil Jones

Definitely agree with M1. Please consider Hospice.

harshedbuzz

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

That need to be with you is so common among PWD, that there's a term to describe it-- shadowing. On paper it might not seem that big a deal but IRL it can drive a 24/7 caregiver over the edge. Do you have any help coming into the home to give you regular breaks? Are their adult programs in your area that might give you some time to recharge you batteries? Your Area Agency on Aging should have some ideas about what's available in your community.

I would keep trying to get the meds adjusted given her anxiety level. If you aren't working with a geriatric psychiatrist, it might be wise to find one. They're the specialists for this sort of medicine and tend to be more successful than neuros or PCP in dialing back anxiety and behavioral issues.

About stages. Most docs use a 3- stage scale of mild, moderate, severe that aligns with medications they might prescribe. Caregivers tend to use a 7- stage model that is aligned more with caregiving needs and symptoms. Given that you are the one who is with her most through the days and nights, you're the expert on this.

Tam-Cummings-LLC-Handouts.pdf (tala.org)

One caveat, this chart is specific to Alzheimer's and will not likely be 100% applicable to your situation given that your mom's dementia was triggered by a TBI. She may progress at a different rate or have earlier issues related to the area of her brain impacted by the injury.

I'm sorry you feel abandoned. It's pretty typical sadly. It can be really difficult for people who formerly formed a situational friendship to sustain that once a PWD can no longer participate. More intimate friends and family are more likely to avoid because it's upsetting to lose someone this way and because it can be scary to consider oneself in your mother's place. Your friends probably just don't get it unless they've lived it themselves-- grandpop having dementia when they were kids doesn't count.

HB

WIGO23

There are weighted, anti-anxiety pillows available on Amazon you might want to look at. They look like plush animals weighing 4-5 pounds.

I actually have one to hold and it helps calm me especially when I lay down at night. I looked at weighted blankets but I was concerned it might be hot. As a caregiver, I deal with the challenge of anxiety daily. They might help your Mom too.

There are also robotic cats and dogs (more expensive) available too. I looked at those but they are not soft yet make movements and sounds like real pets. Usually around $129 on Amazon and search “Joy Companions”.

Hope this might help! You sound like a terrific and caring daughter by the way!

Ed1937

Tears, welcome to the forum, but sorry you need it. You have some excellent replies above, and they're all on target. Family and/or friends seem to disappear or at least not be "around" as much as before. That doesn't mean they are bad people. They just don't know how to handle the situation, and things are easier if they are not too close to the situation. We don't know much about your family, but if you have siblings, please come right out and ask them for help. Even if you can get a few hours a week, that can help. If they tell you they will help, but are still distant, ask again. You might need to repeat the fact that you need help. Just do it. It might be hard to do, but once you do it it will become easier, and you will be glad you did that. If your mother has siblings, and they are able, ask them for a little help too. Whatever they can do will help, even if it's only to make meal or two for you.

Shadowing is a big problem with this disease. It might help a little if you try to see the situation from their eyes. In 1995 I had a stroke, and recovered nicely after a few months. But if I went into a grocery store with my wife, and she walked to another aisle where I couldn't see her, I became very anxious. It was horrible. You are the one she depends on, and when you are not next to her, she feels lost and vulnerable. It's hard to understand if you have not experienced it yourself.

Keep asking questions on the forum. People here are not judgemental, and can offer support in different ways. Just about any subject is OK. It may also helpful for you to read some or the older threads.

Edit: One thing I should have mentioned is seeing a CELA (certified elder law attorney). If this has not been done, it should be done ASAP. They can protect a lot of assets, and suggest any other things that may be needed, like healthcare and financial power of attorney, as well as educating you about Medicaid, which varies by each state. The first meeting is often free of charge, and that can be verified when making an appointment.

Deepbluetears

Thank you all❤️

I have the utmost respect for all of you. Thank you all from the bottom of my heart for the info and suggestions. I was feeling very weak yesterday and have some hope now. I have asked family and friends for help more than a few times I have offered to pay out of pocket I have cried while begging for a few hours and it’s never possible. I’m going to start looking for more info on here as well trying to navigate this site lol

Huge thank you to all🥰

Chammer

Tagging onto @WIGO23 there are also weighted vests and compression vests for anxiety that can be used as well if she isn't able to keep up w a weighted animal.