general anxiety

nantucket · October 31

hello-I am new to this group and discussion forum as my husband is now in a group home/assisted living facility and I am on my own. The more time away from each other, the more memories pop up that now seem 'weird' and signs of the dementia beginning, but I had no idea and just shrugged it off. Over and over agin, doctors told him/us it was depression and we had to patiently wait time and time again for the medication to get into his system (30 days +) and throughout it all, he was getting worse-not driving, not working, unable to function and do simple things…I had to fix tax problems, bank issues, his leased car, his business, find a new place to live after our landlord needed to sell the house we were living in… it has been a helluva lot over the past couple years. Plus my in-laws hate me(long story but BIL is legit crazy) and have made my life a living hell, making me scared to get the mail or answer the phone or run into them at the facility (because I have been gracious enough to keep them informed of the basics at least). I need to talk to people who are living this, too, and know I am not truly alone. I cry every single day. I have friends and two adult children, as well as a part-time job as a teacher-all have helped a lot but no one really understands, not if they haven't LIVED it. And I am worried so much about the future-how long will he live? How am I going to afford it all? What rights do I have?

WIGO23 · October 31

You are heard. Anxiety is my ever constant companion now. There is no experience in my 74 years of this life that has been more challenging than having this dreaded disease take my DH slowly from me and our family. My DH has the disease but all of us who love him are sufferers too. There is no one experiencing this the way you are. It is unique for each of us. All I can offer is a listening ear and genuine caring.

jgreen · October 31

Hi Nantucket.

I agree with Wigo that each of our experiences are going to be different, yet each of us is on a terrible journey to see that our LO’s are cared for until the end. Your primary job is to see that your DH is safe and as comfortable as possible, and it seems as though you have done just that. You also need to take care of yourself so you can be there for DH. Your job is not to make family and friends happy; it will never happen when they see their loved one through a much different lens.

I just started working with an Elder Care Attorney and am taking care of powers of attorney. Later will look at placement options if and when I need to make that decision. I believe such an attorney could help you determine your rights as the wife (which I think supersede everyone else’s) and perhaps with financial advice on how you can protect your own assets.

This wonderful support group is a Godsend for me. I have learned and continue to learn a lot. I still have those days when nothing seems to go right and get frustrated and so very angry! And then I find that others are in similar situations and are powering through those tough times. I learn from those times and feel I can use those experiences to do better when they repeat.

Hang in there. It’s going to be rough for a while. Sending prayers and hugs.

DonnaPJ · November 1

A very helpful book is the 36 hour day. It has a wealth of information spanning many topics. Perhaps find a local support group and resources through ALZ Massachusetts Chapter. There is support out there.

nantucket · November 1

https://alzconnected.org/discussion/comment/257384#Comment_257384

Thank you for your reply! I have POA for our retirement accounts and am his Rep Payee for his SSA. What I do not have , notr did we ever think or know we might need it, is POA over everything. As the wife I have made all the decisions, obviously, but I keep hearing that I need to get POA. But how can I get that when he is already incapacitated? It is all just so overwhelming and scary!

nantucket · November 1

Thank you all so much for taking the time to read and respond to my post! I have registered for a zoom/video support group coming up in the next week or so, to which I am really looking forward to!

SDianeL · November 2

https://alzconnected.org/discussion/comment/257468#Comment_257468

welcome. Many of us missed signs of dementia in our loved ones. We think it’s due to aging. Doctors aren’t much help. You are at the right place for info and support. We understand what you are going through. Ditto on the book “The 36 Hour Day” which was recommended by a nurse. I would speak to an attorney about your options in lieu of a DPOA and what decisions you are allowed to make as a spouse. If he’s already in a facility you may not need anything further. Court ordered guardianship is an option but expensive. Best to ask an attorney. As for his family unless they are willing to take him in and care for him they don’t get a vote. I would continue to avoid them and ignore them. Hugs. 💜

annie51 · November 2

You’ve come to the right place for advice, validation or just venting. It’s so overwhelming at first - just take it one day at a time. I found it helped me to cross off each day on the calendar at the end of the day and tell myself “you made it through another day”, then another month. You have some good advice here already so I have nothing to add but good thoughts and hugs! Good luck with the support group - it’s a step in the right direction.

nantucket · November 3

❤️

Maru · November 3

https://alzconnected.org/discussion/comment/257468#Comment_257468

To get POA over everthing, you need to talk to an attorney. Each state is different, but most will require one or two doctors verifying that he is incompacitated. If he has dementia that should not be hard to get.

general anxiety

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