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where do WE turn for help?
sani2218
Posted: Monday, September 28, 2015 12:30 AM
Joined: 9/27/2015
Posts: 5


My name is Sandi and I take care of my spouse, Donna. Donna and I have been happily married for 21 years. Donna was diagnosed with mixed dementia in 2002 and had rapidly progressed through the first five stages. She has been in stage six for about a year and shown signs of entering stage seven( the final stage). Donna has always been a hard worker and would give the shirt off her back to anyone in need. She took care of me for all these years and now I find myself in the position of taking care of her. It is so hard to watch this disease progress. Donna gets so embarrassed when she needs to be changed. I try to reassure her that it's the disease but sometimes it makes her cry. They delivered a hospital bed for her today. Things are moving too fast. I'm not ready!!!!
Mimi S.
Posted: Monday, September 28, 2015 8:28 AM
Joined: 11/29/2011
Posts: 7036


Hi Sani,

Welcome to our world.

I know you're not ready but do check out your local Hospice and give them a call.

The_Sun_Still_Rises
Posted: Monday, September 28, 2015 2:48 PM
Joined: 7/24/2015
Posts: 3020


Hi and welcome,

I don't think anyone is every ready for this journey.

My heart goes out to you guys in the changing department, it sucks to be aware as these things happen.

Just wanted to say feel free to join in the spouse and caregiver sections as well (well, feel free to join in anywhere), but those two tend to get the most activity.

Hang in there, glad you found your way here.


sani2218
Posted: Monday, September 28, 2015 10:24 PM
Joined: 9/27/2015
Posts: 5


I know.. how could anyone be ready. I guess it's a little cry for help. I am dealing with an agency called In-Home Supportive Services to see if I can get some help with Donna..even for a few minutes so that I can take a breather. This agency allows me to hire caregivers and is funded by the government. Unfortunately, the case worker that they assigned to us is homophobic. When I introduced myself as Donna's spouse, the woman became livid. She asked inappropriate questions, like sleeping arrangements and told me I would have to jump through hoops to even get an hours care. Well, I jumped through those hoops and crossed all the T's. I've been waiting for several weeks to see the final papers only to find out that they "lost" the information I sent. I'm just really frustrated and don't want to fight the fight but that means I won't get the help. My days are full and I need to be concentrating on Donna. Thank you for listening.
sani2218
Posted: Monday, September 28, 2015 10:25 PM
Joined: 9/27/2015
Posts: 5


I know.. how could anyone be ready. I guess it's a little cry for help. I am dealing with an agency called In-Home Supportive Services to see if I can get some help with Donna..even for a few minutes so that I can take a breather. This agency allows me to hire caregivers and is funded by the government. Unfortunately, the case worker that they assigned to us is homophobic. When I introduced myself as Donna's spouse, the woman became livid. She asked inappropriate questions, like sleeping arrangements and told me I would have to jump through hoops to even get an hours care. Well, I jumped through those hoops and crossed all the T's. I've been waiting for several weeks to see the final papers only to find out that they "lost" the information I sent. I'm just really frustrated and don't want to fight the fight but that means I won't get the help. My days are full and I need to be concentrating on Donna. Thank you for listening.
Mimi S.
Posted: Tuesday, September 29, 2015 7:39 AM
Joined: 11/29/2011
Posts: 7036



Dear Sandi,

First, find out who her superior is. Report her behavior. And even if a different caseworker is assigned, do follow through what I've written below.

It sounds like this is a government program. State or Federal? ASAP go to your representatives. Go to your representatives in both branches (EX, Federal, your representative and 2 Senators.)

This sounds like a gross violation of law. And I can understand that you may not have the strength to follow through. Are you a member of any G/L group, especially one that has ties to a lawyer? Contact them and maybe they will do the fighting for you!

Do let us know what happens.

King Boo
Posted: Tuesday, September 29, 2015 7:56 AM
Joined: 1/9/2012
Posts: 3041


Hi Sandi-
I am so very sorry that you encountered the darker side of human nature. This is definitely a violation of your rights and could be pursued with an attorney; however, as you are a caregiver, you may have little energy for that right now as your focus is on your spouse.

The easiest recourse for your immediate need for help with care may be to turn to a different agency. Do you have any friends who have had a good experience with home health?

The other possibility is that entering Stage 7, your spouse may very well become eligible for supplemental hospice services to augment the home health. Hospice is no longer for the imminently, dying within days scenario that so many think. My LO used hospice services for almost 6 months, thriving on them, before passing away. Some people have had loved ones come on and off of hospice several time, receiving the benefit for a longer period of time.

I hope others will come by with additional advice and input for you.

bethNC
Posted: Tuesday, September 29, 2015 8:18 AM
Joined: 6/6/2015
Posts: 55


Welcome, Sandi. I do understand how devastating the treatment you received from the home agency can be.

You may well feel it is hopeless to try yet another agency, but I urge you to follow the suggestion to contact your local hospice. Even if Donna does not qualify at this point, most hospices have significant experience with AIDs patients and are highly sensitive to LGBT issues. They should be able to give you a reference to an agency that does not discriminate and may be able to help you file a complaint against the first agency.

You may not have the energy to initiate a complaint on your own. That is okay. Your first priority is to get the help you and Donna need. A phone call to hospice will get the process started.

And please come back here as often as you like with as many questions as you can think of. You'll be swamped with support and find information you won't find anywhere else.

The_Sun_Still_Rises
Posted: Tuesday, September 29, 2015 10:14 AM
Joined: 7/24/2015
Posts: 3020


I am so sorry that you experienced that. I second getting another agency. I had a really bad agency and case manager the first year and it was heck, then I found a better one and things have been really great.

You will appreciate the help whenever you get it. It is a process for anyone.

Make sure when they are looking for someone for you that they are aware of your needs, you might add someone who isn't homophobic.

When I got my diagnosis, my workers became much worse to me and we had to fire them...so I added to my needs in workers someone who knows how to work with people with dementia. So far that has proven the best thing I could have added.

We ended up going with a company that deals with brain injury.

Hang in there.


Jo C.
Posted: Tuesday, September 29, 2015 11:00 AM
Joined: 12/9/2011
Posts: 10043


Hello sani2218 and though I am very sorry for the reason that brought you here, I want to extend a very warm welcome. My heart goes out to you in regard to your spouse's dementia and the grief that the progression of her declining condition is bringing. Your spouse is blessed to have such a loving and compassionate advocate at her side.

You have already been given good input, and I too agree with the great advice. Sani, you will find that there is SO much support on this Message Board that you will find it a mainstay for advice, helpful hints for care issues, there is a lot of experiential wisdom and more than anything; there is a wealth of personal support beyond counting. We are so glad to make your acquaintance and have you in our midst.

You have found your way to the LGBT specific Forum and that is fine, but I do also want to invite you to post anywhere on the Message Board you wish. Most of our LGBT friends who have been on this journey use the Spouse/Partners Forum for their posts and input. There is a lot more input there and a whole lot of great practical information and support.

I have been on this Message Board for years, and always, without exception, our LGBT Members have alway been welcomed with open arms no matter where they choose to post, and you will find much more input on the other Forums such as Spousal/Partner and Caregiver Forums. So, feel free to do what you wish, you are part of our extended e-family now and you are not alone.

Also, I would like to share with you that the Alzheimer's Assn. also has a Helpline that can be reached at (800) 272-3900. If you call, ask to speak to a Care Consultant. Consultants are highly educated Social Workers who specialize in dementia and all the dynamics that surround that diagnosis. The Consultants can offer their support, help to problem solve, provide information including contact information regarding supportive entities within your community. There is NO fee for this service.

Please do let us know how you are and how things are going. We will be thinking of you and we truly do care.

J.


Kathy43
Posted: Wednesday, September 30, 2015 1:38 PM
Joined: 3/11/2014
Posts: 318


I don't have any solutions beyond what everyone else has said, BUT I just wanted to give you a virtual hug. I don't know about you, but the only way I can deal with this is one day at a time. Hang in there.

newellar
Posted: Monday, October 5, 2015 11:30 AM
Joined: 9/11/2015
Posts: 147


Hello Sandi, I just wanted to also say welcome and that I have found support here. I read a lot and have posted a few times so far. This seems to be a safe place for asking anything that come along in this journey so many people are on. My wife is somewhere stage 4 or 5ish. We really just started the process to understand and get a diagnosis the last 6 months or so. Memory issues have been a concern longer.
I too feel that things are moving too fast and I am not ready.
Hugs,
Tony

socwkr
Posted: Monday, October 26, 2015 9:18 PM
Joined: 10/6/2012
Posts: 924


Hi, Sandi. I just ready your post. I don't know where you live but wanted you to see a service in NYC for the elderly LGBT community. Please see the link below:

https://www.sageusa.org/nyc/sageday/index.cfm

You might want to give the Alzheimer's hotline a call to see if there might be some LGBT services near you.

Also, don't feel shy, come, introduce yourself, and visit with us on the spouse's forum. You'll receive a warm welcome.

Hugs, Debra.

writervicki
Posted: Monday, November 16, 2015 11:56 AM
Joined: 7/26/2015
Posts: 26


Hi Sandi,


I only just now saw your post.  I hope you'll have time to come back to the forum and read all our messages of support for you.

My Mom had a very loving spouse who cared for her.  It sounds like you are just the same for your dear partner.

Just know that you are not alone.  Lots of people out here understand what you're going through.

Much love to you!

Vicki