New - need to hear from smartr people than me

jERRYLH

As a (the) caregiver - right now my mind is so overwhelmed I don't even understand how I can feel this way, so lost -- so helpless - so completely beaten (it seems).  Thanks for listening - I can't 'comprehend' feeling so ignorant, so inadequate.  I 'Know' many of you know of what I speak.  I've always been a person of action -- t this point I am frozen with fear, ignorance and grand talent for recognizing the glass is hall full (and then work to fill it).  Again thanks for listening.

jfkoc

Sounds spot on for a "new" caregiver.

Ignorant, inadequate, overwhelmed, fearful etc.

While this journey is not ones first choice there are aids to  making it less challenging.

You have taken what I think is the very best first step and joined us here. We will share information that you are not going to get anywhere else that I know of. In addition we are going to be your support group and like all support groups you will find yourself closer to some and simply not like what some others post. The key is to know that 99.9% of the posts are meant to be helpful even if you take exception to some.

So welcome....share your problems and your feelings with us.

Question...have you done any reading yet? What?  We will give you some more suggestions.

jERRYLH

jfkoc wrote:

Sounds spot on for a "new" caregiver.

Ignorant, inadequate, overwhelmed, fearful etc.

While this journey is not ones first choice there are aids to  making it less challenging.

You have taken what I think is the very best first step and joined us here. We will share information that you are not going to get anywhere else that I know of. In addition we are going to be your support group and like all support groups you will find yourself closer to some and simply not like what some others post. The key is to know that 99.9% of the posts are meant to be helpful even if you take exception to some.

So welcome....share your problems and your feelings with us.

Question...have you done any reading yet? What?  We will give you some more suggestions.

THANKS GREATLY.  As to what I've read, near nothing, our journey, here is our start (other than the the Dr who referred us to here.

towhee

Good for your doctor for referring you here! Resources- "Understanding the Dementia Experience" approx. 30 pages available free online. Gives you a good emotional understanding and useful facts.  The 36 Hour Day, available from your local library and in every format from amazon. The go to resource for everything.  Youtube videos by Teepa Snow. She covers just about everything, and she also role plays people with dementia. If you think it is only your loved one with dementia behaving like that, Teepa lets you see that it is the disease. Alz.org website, they have good information but you have to hunt to find it, ignore popup fundraising ads and scroll down, look for sections labled "Quick Facts".  Honestly, in my opinion every time they redesign the site they make it harder to find information. Check out your closest Alzheimer association office, see if they have a support group you can join. Alzheimers association helpline 1-800-272-3900, 24/7 good for information and emotional support. Also, www.caregiver.org. On their home page scroll down and click on "caring for another" then click on the left of next screen "all resources" then search for "caregiver college video series". I found these very helpful. And www.nia.nih.gov/health/alzheimers, scroll down and look at the articles.

Welcome to this group. Ask anything, someone here has had the problem before.

Mint

Welcome to the forum jERRY.  You have received some good advice.  Keep coming here and learning.  Also, you are free to vent here if you feel the need too.  We will understand feelings others outside of dementia do not.

PastorB

Welcome jERRYLH! This is a good place to begin and you've already received some excellent encouragement and advice. In addition to The 36-Hour Day, I will recommend Jennifer Ghent-Fuller's Thoughtful Dementia Care: Understanding the Dementia Experience. The author talks about dementia from the experience of the patient. It explained such things as why DW always followed me when I would take her shopping (needs me as the anchor in a world that is no longer making sense) and such things as procedural memory, which allowed her until even now to do some routine tasks, even though she could no longer drive, cook, or handle complex situations.

DW and I are now going through the transition from caregiving at home to placement in memory care. She was admitted to a facility this week. Not only is she adjusting to the new circumstances, but I am adjusting to living alone for the first time.

Sometimes the advice you get here will make sense in your context, other times less so, because everyone's situation is different and people progress with these horrible diseases at different rates and in different ways. You will find, though, that everyone here is in your corner and we want to help you as others have helped us. 

Every Blessing!

jfkoc

Please read I'm Still Here by Zeisel. Also read one of Naomi Feil's books about validation. For specific problems google Teepa Snow.

The education is ongoing...for the duration.

eaglemom

Welcome to the message boards jERRYLH. You will find support and guidance here. Even a soft virtual shoulder that understands what you are going through.

If you will go to the top of this page you will see the title "solutions." Click on that and various subjects will come up. Simply click on the one(s) your interested in.

This is a learning curve for each one of us. Be patient with yourself and come here for guidance as often as you need.

eagle

Bunnymom

I am brand-new to this site.  I found it at 2am in the middle of the worst night of my life thus far!  TBTG, I have already benefitted from suggestions to jERRYLH—  My 80 y.o. Husband started a neuro workup in 2017, but refused to finish the testing, so official Dx was memory loss”, Neuro guy knew what he was dealing with and said he would start meds anyway.  DH refused all meds.  Scared and in denial I’m sure because his dad had died with Alzheimer’s and remains in total angry denial that he has same problem.  His Neurologist (whom we know personally) said:  “OK, first things first.  Can I treat your anxiety?”  He did—that was over 4 years ago.  Symptoms have of course progressed and I have no family support thus far.  So, so overwhelmed most days now.   I’m guessing DH is somewhere mid-stage (?) with worsening and sometimes new symptoms showing daily.  Last night for first time he persisted with a total delusion that was dead-wrong with evidence to prove it.  Finally we both blew.  Y’all responding to jERRYLH really helped me to feel less alone.  THANK YOU SO MUCH!

abc123

Welcome to Jerry and Bunnymom. Glad you found us. 

I advise reading everything you can find about dementia/Alzheimer’s. Also read these boards as much as possible. Ask questions here, comment here, rant and vent here too! Teepa Snow on YouTube is awesome. A big help. 

A suggestion I like to share, please don’t talk about Alzheimer’s/dementia with your LO or in their presence. I also highly recommend using fiblets. Keeping our LO calm is extremely important. We need to answer their questions with kindness and patience. We should always tell them things that will make them feel safe and loved. This isn’t easy but we have each other. We care about you and your LO’s. I’m very glad you found us!

jERRYLH

Thanks over & over to each of ya'll.  Without question - I'll be visiting regularly.  My fear is causing me to freeze (brainwise) I don't understand this seeming feeling of total of loss of ability to plan (for this event). This is so alien to my life prior to ---. Thanks for listening!!  I am thankful for the days she seems to closer to home.