'Welcome to the Suggestion Box group!' posted by Caring Community @ {post.created_at.to_s(:post_time)}

Caring Community — Tue, 27 Dec 2011 22:17:46 -0000

Hello 'Vaycaymom', Thank you for sharing your thoughts. Here are a few resources you may find helpful through this time:

1) Dementia Symptoms: http://www.caring.com/articles/signs-of-dementia

2) Where can I find a support group for caregivers of people with non-Alzheimer's dementia?: http://www.caring.com/questions/dementia-caregiver-support-group

3) Article about FTD: http://www.caring.com/questions/symptoms-of-dementia

Please don't hesitate to contact us if we may help you find more resources. We hope these resources are helpful to you.

'Welcome to the Suggestion Box group!' posted by Vaycaymom @ {post.created_at.to_s(:post_time)}

Vaycaymom — Tue, 27 Dec 2011 13:42:02 -0000

I also wish there was a place for FTD care givers. My life changed suddenly and forever just 3 months ago. WE now live in a rental an hour away from our oldest, I don't speak to her or her husband. I barely speak to my youngest. We moved here to be close to a supportive friend and we even chose to spend the holidays with her rather than our oldest who stayed in town. This site has been imensely helpful to me emotionally, but there are unique issues with FTD, like being berated and insulted by your spouse and then he expects sex. There are days that it is hard to get through knowing that it will only get worse and there is nothing to look forward to, absolutely nothing.

'Test, please ignore' posted by emily4 @ {post.created_at.to_s(:post_time)}

emily4 — Wed, 09 Nov 2011 19:30:39 -0000

response, edit

'Test, please ignore' posted by emily4 @ {post.created_at.to_s(:post_time)}

emily4 — Wed, 09 Nov 2011 19:30:23 -0000

This is a test post, edit

'When caregiving ended, I realized that I had been isolated so long that I had no life to go back to.' posted by sannah @ {post.created_at.to_s(:post_time)}

sannah — Mon, 07 Nov 2011 22:55:08 -0000

I started caring for both my parents a year and a half ago. Dad took sick last Nov. We kept him home on hospice until his passing last March. Now I care for my Mom who has moderate dementia. My husband has been so helpful when he gets home from work. Problem is he can't imagine what it is like to be with Mom all day. My life is on hold. We moved to where we are currently living when my parents moved in with us. My husband had to be relocated because of his job. I do not know anyone in the area and haven't had a chance to get to know people. I am gradually becoming a recluse and talking with people is hard. On top of all this I am disabled myself with degenerative problems in my spine. Some days are very hard. I have awful pain at times and would like to stay in bed. Mom follows me everywhere I go. (except the bathroom). I have concerns about not getting out. It costs alot for us to go out and have agency come in so I don't do it often enough. My husband and I really need a break but we have no help. Our family is not nearby or they would gladly help.

'When caregiving ended, I realized that I had been isolated so long that I had no life to go back to.' posted by CA-Claire @ {post.created_at.to_s(:post_time)}

CA-Claire — Fri, 21 Oct 2011 19:11:41 -0000

Hi CaterinaMaria - Yes, there is life after caregiving (I was the sole caregiver for my husband after his stroke for 3 years until he passed away shortly after open heart surgery). Unfortunately, life doesn't necessarily come to you after your caregiving responsibilities are lessened (by a move into a NH or death), you have to go about creating life around you.

This is difficult, because one would hope that friends and family would make an effort, once the load on you has lessened, but life happened to them while you were caregiving. And another thing which makes it difficult is that depression usually happens to the caregiver along with the burnout.

Start small, choose an activity where people gather - Church, take an adult education class in something that interests you, find a place to volunteer (city hall, police department, hospital, elementary school, thrift store, etc). If you have pets, take your pets to the park and play. Ask a friend to take a walk daily with you, even if your husband is home.

Start small. Once you start to create a life around you, it will snowball into a wonderful life.

'When caregiving ended, I realized that I had been isolated so long that I had no life to go back to.' posted by LissaR @ {post.created_at.to_s(:post_time)}

LissaR — Fri, 21 Oct 2011 17:01:19 -0000

I am just beginning my journey. Thanks for answering one of my questions. I guess all we can really do is get up each day and start again just like our loved ones do.

'Requests, Questions, Enhancement Ideas?' posted by Emily M. @ {post.created_at.to_s(:post_time)}

Emily M. — Wed, 03 Aug 2011 20:18:53 -0000

Hello Youngestsib, Thank you very much for taking the time to post this feedback. We always value comments and suggestions from our members. Caring.com is always looking to improve our offering, and feedback like this is very helpful!

Thanks again!

Take care, Emily | Community Manager

'Requests, Questions, Enhancement Ideas?' posted by Youngestsib @ {post.created_at.to_s(:post_time)}

Youngestsib — Wed, 03 Aug 2011 17:30:28 -0000

A few things that might be looked at:

I'm new to writing anything although I've looked at Caring.com for a long time. In fact, I gave you feedback on the saying "you're here for....." For the first time I wrote something on a forum, and although I can see a few people have read it, there are no reply--that hurts as much as not looking for support. (I saw you had another posting about this before.

Do Caring.com folks follow the forums? Perhaps if there aren't any replies, you could drop a note of encouragement or whatever for that posting. Or, sendthat person an e-mail on how to express themselves so maybe they will get support. I thought the forums were so people could help each other, but it seems some people are looking for help and not getting it.

I know (and see) that people really identify with a few posts and they get MANY replies--can Caring.com help so the rest of us don't feel so isolated and without support?

Another idea; from my limited exposure to the forums, I see an overwhelming amount of misery and folks identifying with the problems of caretaking (I've been a caretaker for my now-deceased Dad, and now for my Mom, so I understand). And there are some really good suggestions here!

But perhaps the caregivers could share between each other on a forum that is a little more positive? Perhaps instead of folks commiserating with their own stories, if someone needed suggestions, they could ask and get feedback of what works on the forum level too (instead of articles that address issues they are not concerned with at that point). I know Caring.com must have sites for this, and there are answers by experts, but sometimes it seems to be so difficult to know where to go on your site since it's so jam-packed with options, etc.

I can understand most of what folks say--I've experienced it myself! And I've had a lifetime of depression and anxiety and anger and health problems because of my situation. Sometimes though, just clear, more positive information by others that know it worked, might be good.

'What About a "Forums" Button on the Home Page?' posted by Rozzer @ {post.created_at.to_s(:post_time)}

Rozzer — Mon, 18 Jul 2011 10:53:26 -0000

Thanks for your post, Emily. I did find out that I could get to the forums through the community item on the My Caring button. That made things easier. Take care.

'What About a "Forums" Button on the Home Page?' posted by Emily M. @ {post.created_at.to_s(:post_time)}

Emily M. — Mon, 18 Jul 2011 03:45:08 -0000

Hi Rozzer,

Welcome to Caring.com! Thank you very much for your post. We appreciate that you've taken the time to send us this feedback. It's very helpful for us to know how caregivers and the public are responding to the information and resources we offer on our website. I've passed on your comments to our team for their consideration.

One quick way to get to forums on Caring.com is to look under the tab "Caregiver Wellness" and under "Resources" you will see link to the "Caregiver Community," which brings you to our forums.

You can also bookmark our forums page from your browser. The main forums page is http://www.caring.com/forums.

I hope that helps. If you ever have any questions, please feel free to contact us at moderators@caring.com.

Take care, Emily | Community Manager Caring.com

'What About a "Forums" Button on the Home Page?' posted by Rozzer @ {post.created_at.to_s(:post_time)}

Rozzer — Sun, 17 Jul 2011 13:33:50 -0000

I'm new and the only way I've found to get into any of the forums is to enter "forums" in a search box. There really should be a better way. Is there? If not, why not put a "forums" button on the home page or on everyone's personal page? Everything else here is so well arranged, I'm surprised that this isn't covered too. Of course, it may be there and I'm just blind to it, so either tell me or please insert a new button!

'When caregiving ended, I realized that I had been isolated so long that I had no life to go back to.' posted by wantherback @ {post.created_at.to_s(:post_time)}

wantherback — Fri, 15 Jul 2011 19:16:21 -0000

I also have been the primary caregiver for my mother who is 89. It has been a slow journey. I know what you are talking about, you become so isolated and don't even realize it. I didn't have interest in anything as I didn't know when the next time she would fall would be and if I left her alone how would she get up. I haven't been able to go anywhere or do anything. My mother fell 4 times within 3 weeks and the last time she was sent to Hospice. As she did not continue to decline, she was placed in a nursing home.

She can not walk, use the bathroom, wash or take care of any of her daily needs, so I had no choice. She lived with us for 34 years and placing her was very difficult. Now the situation has changed for me as it should for you. At first I visited her every day, but now I go every 2 to 3 days. It is just too much stress as the NH is 40 minutes away. She is more alert now and asked me the other day "why didn't you come yesterday, did you get a flat tire?". I have learned to take all of the comments with a grain of salt. While your MIL is in the NH they will care for her, all you can do is be her advocate, know the nurses and aids, and everyone else there so everyone will realize that she is not alone.

Although I miss her, I feel a little better. I have lost 45 pounds the hard way. I am trying to rebuild my life, but it is still hard. If you need someone to talk to I am here for you.

'When caregiving ended, I realized that I had been isolated so long that I had no life to go back to.' posted by Emily M. @ {post.created_at.to_s(:post_time)}

Emily M. — Wed, 13 Jul 2011 16:57:45 -0000

Hi CaterinaMaria,

Thank you very much for your response. I'm very sorry to hear those resources weren't useful.

You may find the discussion Is there life after caregiving? helpful. You may find some ideas for how help ease the transition.

In addition, one of the best places to get support and advice from other caregivers on Caring.com is in your Stage Group.

I hope you that helps.

Take care, Emily | Community Manager

'When caregiving ended, I realized that I had been isolated so long that I had no life to go back to.' posted by CaterinaMaria @ {post.created_at.to_s(:post_time)}

CaterinaMaria — Wed, 13 Jul 2011 03:25:41 -0000

Thank you Emily, for your response. Your suggestions are all great and I do wish that I could have had the advantage of in-home care and support groups. Finding this site WAS my support group since I could not leave her to attend the nearest meetings that were nearly an hour away. My husband was out of state with work on an irregular schedule for 3-6 days at a time and home for 1/2 to 3 days. I tried to find a non-agency elder sitter for a long time. Agencies wanted a commitment of 20 plus hours per week at a rate of $15-27 per hour--something we could not afford. They also wanted a regular schedule and since my husband's schedule was so irregular it would not work. I don't think that our situation was one that is unusual. Yes, I am using the past tense because my MIL is now in a nursing home. Care giving does not end with the move to a NH because you are still involved with their care.
I began the above thread because I wonder how others have adjusted to life after full-time care giving has ended. This site has helped me so much before so when I needed answers, support and even a sense of humor so I turned to it again. Without this site, I could not have continued the last year nor could I have done as good a job as I did.

'chat room!' posted by Emily M. @ {post.created_at.to_s(:post_time)}

Emily M. — Tue, 12 Jul 2011 20:35:00 -0000

Hi mollybegoode,

Thank you very much for taking the time to share your feedback! We're thrilled to hear that you've found Caring.com helpful -- it's wonderful to know that the work we're doing is making a difference.

I also want to thank you for taking the time to give us your suggestion. It's very helpful for us to know how caregivers are responding to the information and resources we offer on our website.

Thank you again for sharing! Emily | Community Manager

'chat room!' posted by mollybegoode @ {post.created_at.to_s(:post_time)}

mollybegoode — Tue, 12 Jul 2011 19:51:56 -0000

First of all, let me express my gratitude and appreciation for this site. So happy to have found it and all the caring, sharing, supportive people that frequent this site. It is my request that a chat room be created within the site. Please condsider this request as I feel most if not all would benefit from this service. Previous experience with another website I belong to (for weight loss management) was fantastic, a place to find immediate help, support and information. Thank you for your consideration. Fellow caregivers... if you agree or are curious.. let management of this site know.

'When caregiving ended, I realized that I had been isolated so long that I had no life to go back to.' posted by Emily M. @ {post.created_at.to_s(:post_time)}

Emily M. — Tue, 12 Jul 2011 18:50:31 -0000

Hi CaterinaMaria,

Thank you very much for your post. I'm very sorry to hear about your situation. It sounds like you are under a lot of stress.

Have you ever considered looking into in-home care to give yourself a break a few times a week? If you'd like to learn more about in-home care, or find in-home care in your area you can do so in our local directory.

You may also find support groups helpful for feeling less isolated.

Take care, Emily | Community Manager Caring.com

'When caregiving ended, I realized that I had been isolated so long that I had no life to go back to.' posted by CaterinaMaria @ {post.created_at.to_s(:post_time)}

CaterinaMaria — Tue, 12 Jul 2011 09:00:35 -0000

After nearly five years of caring for my MIL who has Alzheimer, I realize that I am out of touch with the world.

I had thought that when care giving ended, all I needed was a good rest and that everything else would come naturally.

As your loved ones' Alzheimer progresses, your own speech patterns begin to change. Your communication skills alter: (1) as your vocabulary begins to shrink to fit the limited topics of conversation and (2)as your sentence structure shortens to phrases with physical cues. The first three years I compared my life to the social isolation of a stay-at-home mom with small children. The last two years have been more like someone who was imprisoned.

Through the years my world became intense with a single minded goal--then I became numb from burnout. The social world that I am entering seems so frivolous.

I feel as if I am one of the aliens from "3rd Rock From the Sun" except there is no humor. Instead of just relaxing and enjoying this new founded freedom of reentering the world, I find that I need to be keenly aware of social nuances so that I do not blunder. It now takes courage to get out there and not withdraw as I blunder. Will it get easier??????

'Need tips for us female caregivers /keeping the toilet clean after your husband' posted by Emily M. @ {post.created_at.to_s(:post_time)}

Emily M. — Mon, 06 Jun 2011 23:18:58 -0000

Hello,

Thank you very much for your post. I'm sorry to hear about your husbands diagnosis, that must be difficult for you and your family. If you'd like, you can post this question in our Ask & Answer section.

Take care, Emily | Community Manager

'Need tips for us female caregivers /keeping the toilet clean after your husband' posted by Anonymous @ {post.created_at.to_s(:post_time)}

Anonymous — Mon, 06 Jun 2011 01:30:35 -0000

My husband had prostrate cancer. Keeping the toilet/floor clean is a real chore. We have tile floors in the bathroom and the grout/caulking around the toilet is always wet. Any suggestions on how to contain the "spray", or keep the floor sanitary would be much appreciated.

'Additional Subject Matter Expert/Website Topic presence request' posted by Emily M. @ {post.created_at.to_s(:post_time)}

Emily M. — Wed, 25 May 2011 01:13:13 -0000

Hi Ed,

Thank you very much for taking the time to share your suggestion with us. We are always looking for ways that we can improve Caring.com. We will keep your suggestion in mind for future content additions.

Thanks again for your suggestion!

Take care, Emily | Community Manager

'Additional Subject Matter Expert/Website Topic presence request' posted by PossitveEnergy @ {post.created_at.to_s(:post_time)}

PossitveEnergy — Wed, 25 May 2011 01:00:48 -0000

Good Day Caring.com

While I am very impressed with your site's resources and extensive detail associated with each specific illness, I was surprised not to find what I was looking for.

An additional category focused on Amputees and associated sub categories that will cover; Phantom Pain – It is Real, The Emotional Dependency & Physical Liberation needed for them to live, Handy-capping you home, resources for building ramps, ease of access entryways, Scooters, financial resources and help with any associated government forms/processes/red tape.

I am happy to provide details from my personal experiences over the last 5 years of being my wife’s primary caregiver if it will help understand my reason for making this request. I know that if I had anything close to Caring.com as a resource when I started going through the mountain of things needed for taking care of my wife, it would have helped me tremendously.

Thanks for doing what you do.

PositiveEnergy

'Would you please add a Medicare forum to your Forums area?' posted by eMedicareSupplements @ {post.created_at.to_s(:post_time)}

eMedicareSupplements — Fri, 29 Apr 2011 02:37:11 -0000

I know that my reply is a bit late, but just thought I'd offer my two cents. It's apparent that Medicare is overwhelming for many seniors, you're not alone! If you have specific questions, here is a website that showcases daily articles on a wide variety of Medicare-related subjects. There are videos and helpful articles on specific subjects. The sources are quite reliable and the company is friendly and intentional in their service of providing seniors with pertinent purchasing advice. Peruse them and see if any are helpful!

http://www.emedicaresupplements.com

'Would you please add a Medicare forum to your Forums area?' posted by anjohnson @ {post.created_at.to_s(:post_time)}

anjohnson — Tue, 05 Apr 2011 18:01:29 -0000

Based on past experience, the insurance agents at Medicare MarketPlace are known for being caring & knowledgable, and they receive feedback frequently to the experience as "refreshing." You can call with any questions and get honest, reliable information.
Check them out at www.medicaremarketplace.com

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