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Bev, I am where you are as far as sometimes not knowing how much more you can take mentally, physically and financially. Also the depression and the frustration of not being able to just walk out the ...Read More

Bev, I am where you are as far as sometimes not knowing how much more you can take mentally, physically and financially. Also the depression and the frustration of not being able to just walk out the door for even a few minutes. But like you I have all faith in God and I just know that He will see all of us through. Fortunately my Mom is completely ok mentally, though I do believe she had a mini-stroke recently which left her unable to recognize me or herself or anyone else, and speaking some unknown language. But thank God that passed and I do have all of her back again. I'm so sorry that your Mom suffers from dementia, I pray that both of you will be able to deal with it. Keep coming here to vent, everyone knows how it feels and are very supportive.

Jill

Hi all, I've been keeping up with the posts but haven't gotten around to writing until now. Welcome to all the newcomers, I'm sure you will find we are good listeners and can all sympathize with you. ...Read More

Hi all, I've been keeping up with the posts but haven't gotten around to writing until now. Welcome to all the newcomers, I'm sure you will find we are good listeners and can all sympathize with you. Susan, my situation has some similarities to yours, as far as being totally broke, and also needing a caregiver for my Mom while I work. Here are some things that I have learned which may help. I have recently learned of a govt. program called Nursing Home Diversion, which is where they will pay for a certain number of hours of a caregiver per week (I think 20 hours but not sure) and also provide what they call 'consumables' which are items such as Chux, diapers, body wash, shampoo, lotion, etc. Call your local Dept. of Elder Affairs for info. Also, when I first had Mom move in with me I used an agency until I was able to find someone on my own. I don't know about where you live, but in Florida where I am the going agency rate is around $15 per hour. I have a caregiver who just works for me for considerably less. The hard part is finding someone to begin with. After that you'll find that people will know other people, etc., and it will be easier. My suggestion would be to look in the paper for someone looking for that type of work, and you should also look in any of your local free papers. Also, if you know anyone who might have a friend or relative who does caregiving, that's a place to start also. I have found that once I started using non-agency caregivers, I kind of got 'in the network' so to speak as caregivers usually know others. Also, besides asking Dept. of Elder Affairs about the Diversion program, ask about food stamps, and also if your Mom might qualify for having her Medicare Part B paid for (it's about $96 per month) and also having her prescription plan paid for, if she has one. Also she if she qualifies for Medicaid. And, with your Mom in such poor health, might she qualify for hospice care? Her doctor could refer her, and that would cover many, if not all, of her meds, plus you could get an aide in for a good bath and bed change a couple of days a week. Also they can supply any medical equipment she may need which you now pay for, such as oxygen, hospital bed (even a specialty one if she has bed sores), bedside commode, overbed table, shower chair, and whatever else she might need. I hope some of this will help you, and if nothing else you have a whole group of us who know exactly what you are going through. For me personally, I am an only child, also juggling which bill to pay, and have also promised Mom that she will never go into a nursing home. Things really will work out, somehow. Another thought, check with your local phone, water, electric, gas companies and see if they can arrange a budget plan so that your monthly bill will be closer to the same amt. each month, and they may even offer some type of discount for senior citizens with no money. Definitely worth looking in to. Please don't lose all hope, and keep coming back.

Jill

Hi sandy89, you need to go to the home page and log in, and once you've done that, you go to this particular discussion, go to the last comment, and there will be a box below that which says Submit yo ...Read More

Hi sandy89, you need to go to the home page and log in, and once you've done that, you go to this particular discussion, go to the last comment, and there will be a box below that which says Submit your comment. Just type in whatever you want to say, and then click on 'submit' which is right below the box. Sometimes it takes you back to the home page and makes you log in again, sometimes not. When it is accepted, it will say something like 'thank you for your comments'. Hope this helps, and welcome!

Jill

Hello ladies! Tried to post the other day but the darn computer cookies were at it again (though I'm still not sure what they are), so let's see if this goes through. Sounds like we are all doing ab ...Read More

Hello ladies! Tried to post the other day but the darn computer cookies were at it again (though I'm still not sure what they are), so let's see if this goes through. Sounds like we are all doing about the same as usual. Too much stress, too much guilt, not enough time for ourselves. I'm very glad to say that my Mom has done really well for the past week or so, and I was even able to take her out for a few hours on Saturday to a rummage at the apartments where she lived for 16 yrs. before moving in with me. She really enjoyed visiting with her friends. Also, she loves to watch sports on tv, and there is a lot on right now, so that's enjoyable for her (though mostly she can only listen, her vision is nearly gone from macular degeneration). Also we are having company this weekend, the gentleman friend I have written about. He makes no bones about being in love with me, says I have a standing marriage proposal, but I just don't share those feelings. He is a wonderful friend but I just don't have any romantic feelings for him. He knows this, so I don't think there will be any uncomfortable times while he's here. Also he is too much of a gentleman to suggest anything I am not comfortable with.

Roxie, I guess you're enjoying your daughter and son-in-law staying with you. Look at it this way, you'll be able to go visit in Hawaii next year!

Brenda, how are things on your homefront? I know, BOWELS, etc! Same here :-) Glad to hear your Mom continues to improve in her mobility. Are you able to take her on outings? And have you made good on your threat to give her a 'time out' in a nursing home if she doesn't be nicer? We all feel that way sometimes!

Cat, thanks again for the positive encouragement, and good information, about my BORING IRS stuff. So I'll try not to say another word about it until I hear back from the Tax Advocate, and then I'll update you. Until then, hope you and Mom are doing well and continuing to enjoy your outings. You'll see above that Mom and I had one last weekend and both really enjoyed it. I hope she continues to feel well, that will mean more opportunities for us. She even enjoys going around the block in her wheelchair with the caregiver while I'm at work if the weather is nice.

Carol, great advice and encouragement from you as always. Thanks for being here!

Welcome to our newcomers, I hope and believe you will find this a wonderful place to vent as well as get information and encouragement. We are all where you are, and everything you are feeling is normal. It's ok to get mad and tired and frustrated, and then the guilt that follows is also ok. If you will follow the advice that has been posted here regarding who to contact for some type of assistance, whether nursing home, respite care, whatever, you will be on the right track to begin navigating the maze that is Elder Care in this country. Just know that the wheels grind VERY slowly, and don't give up. You are the advocate for the person you are caring for, you are their voice, and if you think things are bad now, imagine if you weren't there at all. You will learn how and where to look for whatever help is needed, both for them and for yourself. And that's important, not to neglect yourself either physically or emotionally. Realize that you can't help them if you can't help yourself. Just jump in, keep at it, pray alot, and keep coming here. We're all here for each other. Right, gang?

Hope to hear from you guys soon!

Jill

Hello all, it's been quiet on this post for a few days now, hope that means no news is good news. I'm glad to say that's the case for me. My Mom is doing very well lately, all things considered, and ...Read More

Hello all, it's been quiet on this post for a few days now, hope that means no news is good news. I'm glad to say that's the case for me. My Mom is doing very well lately, all things considered, and it's been so nice for both of us. She is staying up nearly all day, eating well, and most importantly, sleeping well! And we were able to get an aide, not just a sitter, for 4 hrs per week through Medicaid (I think), which I schedule for my day off so I can get my errands done without paying extra hours to our regular caregiver. Also, the hospice service has found a sitter who comes on Saturday afternoon, and both of the new ladies are great. So I have started using my Saturday time to go to the library and just sit and be quiet and read and think and be left alone. Didn't realize how much difference those few hours could make for both of us. Mom is really enjoying the 2 new ladies, so it's good for both of us.

Cat, I wish I had met you a year ago! You are the only person I've run across who knows anything about the IRS. Yes, my tax atty. has contacted the Tax Advocate office and they have agreed to help me. They feel I qualify for 'can not collect' status, which means I won't have to make payments until I can afford to (if ever) and also that they won't garnish my wages. However they most likely will put a lien on my house, but I have no choice. In 2 more years, I can file bankruptcy which will then erase the IRS debt and release the lien (you have to go 3 years from the time they first started trying to collect before you can do this). But I'm ok with this, no other option anyway. Thanks for all your good info. Hope you and your Mom are still enjoying your outings.

Brenda, I hope your Mom is continuing to improve after her 2 shunt revisions. Have you made good on your threat to give her a respite 'time out'? I'm lucky that my Mom is pretty easy to deal with, personality wise. Though she can be demanding, but I can see why, considering that she is basically helpless, physically. Let us hear from you!

And that goes for Roxie and Austin, too. Roxie, did you get the pillcam results? Is everything ok? Did the wedding take place yet? Austin, is your husband home? Thanks for the encouraging words before, you're right, it feels exactly like you said: banging your head against the wall and saying SOMEBODY LISTEN TO ME!!!

Hello to Mactavish, I tried to answer your original post but something was wrong with the cookies in my computer and I couldn't get anything to submit. Had to call my friend in the middle of the night out of frustration before I started beating on it to get it to work! Anyway I'm glad you've found us.

Hi Carol, miss hearing from you as well. Hope things are good for you.

Love to all, Jill

Hi Cat, as a matter of fact, he filed that form yesterday. We are hoping for exactly what you described. If you can stay in a non-collectible status for 3 years, or to be more accurate if you can ho ...Read More

Hi Cat, as a matter of fact, he filed that form yesterday. We are hoping for exactly what you described. If you can stay in a non-collectible status for 3 years, or to be more accurate if you can hold them off in any fashion, you can file bankruptcy after that 3 years and it is erased. I don't particularly want to file, but it might be my only way to get it erased. So far I am 1 year into the necessary 3. We are hoping to hear from the Tax Advocate next week. How is it that you know these specifics? I hope it's not from experience!

Speaking of experience, I hope mine was helpful to you regarding the firefighters association fundraising. Did you ever call the actual firefighters about it?

I'm glad you take your Mom out with you. My Mom is wheelchair-bound, but lived on her own that way for 15 years. Of course she had to be driven anywhere she went, or would take the bus to the mall, but Christmas before last she became very ill with a bowel obstruction (which thank God resolved without surgery), but she was never able to regain her strength even with a couple of weeks in rehab (they are very bad where we live, and this one was even the one belonging to the hospital where I am a nurse). So she has been with me since then. For a time she was still able to be taken out to dinner or the mall, but she fell this April and then got pneumonia in May, and is just not up to getting dressed and going out. The reason I bring this up is to say that I know what you mean about people not always treating seniors with courtesy and respect. For years, when we would be out shopping or for a meal, the salesperson or wait staff would come up to us and look right over my head and say "Would she like to see something?" or "What would she like to eat?" I would always say "She can speak, ask her what she would like." People seem to treat seniors, or the disabled, as though they aren't even there, or are too stupid to participate in whatever is being said or done. That absolutely drives me crazy, so I know exactly what you mean about people being so inappropriate in the things they say and do. And my Mom also enjoyed dressing stylishly and wearing her nice jewelry (which I bought her when I actually had money!) I'm glad your Mom is still physically able to get out in the world, even if she may not really understand everything all the time. I would imagine that the more she can continue to do normal activities, maybe it will slow the progress of the dementia. I thank God that Mom is still mentally sharp, since she is not only unable to walk or even stand, but also nearly blind. At least she can see tv a little, and hear it, and she follows the news and world events and politics closely, and enjoys sports very much. I hope your Mom has things she enjoys.

Thank you for taking the time to offer information about my tax problems. It is worrying me sick. I'll definitely keep you posted on whatever happens.

Since that post did get on, I figured I'd go ahead and get things off my chest (sorry, the same old stuff). I hired a local tax attorney to try and figure out how to keep the IRS from garnishing my w ...Read More

Since that post did get on, I figured I'd go ahead and get things off my chest (sorry, the same old stuff). I hired a local tax attorney to try and figure out how to keep the IRS from garnishing my wages, which they already almost did, and from taking my house. He gave me a form to fill out and by the time we did the math with all my pay stubs, bank statements, credit card statements, receipts, etc., we found that I am paying out $4700 per month to support me and Mom, and I only make less than $3000 per month. They told him that they won't discuss making any arrangements until/unless I default on the $385 per month payments that I had to agree to to stop them from garnishing my wages. But if I DO stop paying, they will again garnish my wages and put a lien on my house. It's a vicious circle. I have sold everything there was to sell, taken out a 2nd mortgage on my house and given them all of that money, nothing left in the bank, credit cards almost maxed out. There just is no more. And even if I declared bankruptcy, which would only wipe out my credit card debt, then I wouldn't even be able to get a credit card because my credit would be ruined. I have turned off everything there is to turn off, except for the cable so that my Mom can listen to tv (she is nearly blind, and bed-bound and wheelchair-bound) and internet for me because that is the only thing I have left. I never leave the house except to go to work or the grocery store. A big outing is a dr. appt or going to the library (it's free). It costs minimum $1250 per month to pay for Mom's caregiver while I'm at work, and that's assuming I go straight to work and come straight home, no extra hours. So then I either have to try and find a friend to stay with her while I do the shopping, or pay the caregiver extra to stay while I go. Mom has no money at all. And even worse than all that is that I see her getting more feeble and frail every day. Most of the time at work I can put it aside, but sometimes she pops into my mind and I can see her becoming skin and bone, and I almost cry. Sometimes I do cry. Then I start feeling sad and guilty, thinking I should be doing more, be more patient and kind, less tired and cranky, all the usual caregiver guilt. Round and round. Pretty soon there won't be any more money since I am already robbing Peter to pay Paul, and the credit cards will get so high that they will be maxed out and I won't be able to make payments.The ONLY thing that keeps me from losing what's left of my mind over this is my faith that God won't desert us. I just wish that whatever he has planned, he would hurry up before we are forced to live in my car. At least it's paid for, although the IRS can also take it if they choose, or force me to sell it and give them the money. Same with my house. I always thought that was something they couldn't touch, but boy was I wrong. I'm considering marrying a man I don't love, just to be able to sell my house and move us in with him. He is all for us getting married, although he doesn't have the money to do anything about the problem. It would just be cheaper for me to live that way. Not a great reason to get married, but I'm getting desperate because I think that the light at the end of the tunnel is an oncoming train. Well, this is about all I can stand for one night, and probably you guys are sick of reading about it, and believe me I'm even sicker of living it.

Jill

Hi everyone, just getting ready for bed and wanted to check in.

Brenda, I'm so glad you and your Mom will be home at last. I'm sure she'll continue to improve, and probably be less confus ...Read More

Hi everyone, just getting ready for bed and wanted to check in.

Brenda, I'm so glad you and your Mom will be home at last. I'm sure she'll continue to improve, and probably be less confused when she is back in her own place. It will be so much better for both of you.

Roxie, we haven't met yet, I'm Jill. I'm an only child taking care of my Mom. She is 88, wheelchair-bound, fairly healthy but fragile and not very strong. The hospice lists her under 'adult failure to thrive', which is good for us because we get hospice help even though she isn't suffering from anything terminal other than old age. I work and we have a great caregiver for while I'm gone. Also am deep in debt paying for it, which you can learn about by reading some earlier posts! That, and having no family and very little outside help, are my big stresses. But anyway, besides all that, I'm also a nurse. I read that your Mom had the pillcam done. I don't have any words of wisdom about that in particular, but I do think that if there were any bad results, the doctor wouldn't wait until next week to tell you. I can't imagine that if something needed treating that he would wait. Of course I don't know for sure, but that's been my experience. I know it's hard to have to wait, but I just think the odds are that the results will be ok. I'll definitely keep you both in my prayers.

I noticed that Brenda mentioned a wedding--is it you, or a family member? Fill me in!

I didn't get to the dentist today, Mom didn't feel well and wanted me to be with her rather than my friend who came to stay. So that will give me an outing to look forward to another day! And I have an appt. with the tax attorney Friday who is trying to get me out from under the IRS and stop them from trying to take my house. This country has got to change the way it treats our elders. Family members are losing everything trying to take care of parents at home rather than putting them in nursing homes. My Mom has nothing but a small SS check each month, and I'll never live long enough to get out of the debt I'm already in just to keep her at home with me. But I promised her I would never put her in a nursing home and I won't. So, we do the best we can. Of course she doesn't know how bad things are financially, and she won't, because it would worry her to death. So we just make the best of things and get on with it. I'm so glad I found this website, I feel like I have friends here who really understand exactly how it feels.

Anyway, it's way past my bedtime and I'm gonna hate it when 630 rolls around tomorrow. So goodnight everyone, and God Bless.

Jill

Hi Brenda, I was so tired when I got home from work last night that I didn't even have the oomph to respond! But I've had a much better day today and so here I am, my usual happy self :-). Actually ...Read More

Hi Brenda, I was so tired when I got home from work last night that I didn't even have the oomph to respond! But I've had a much better day today and so here I am, my usual happy self :-). Actually I've been stressed since last week after a 'little disagreement' with the doc I work with last Thursday, but yesterday he admitted he was wrong, apologized, and brought flowers to work this morning. So now that's better.

Anyway, I have gone back to Mom's original pain meds which she had developed an allergy to. Gave her 1 last night, got good pain relief and not much itching. So I think we'll try another tonight along with benadryl at the same time, and hope for the best. If the itching stays under control, I'll also go back to giving her 1 at bedtime which helps her sleep, and will solve that problem as well. Here's hoping it works and we can both get back on a regular schedule. Then I know that the quality time we need together will return, once she is well-rested and pain-controlled. We'll both be happier! In fact, we already are. Right now, I'm in my recliner next to Mom's bed. She is napping with my cat Sophie. Tomorrow is my day off and one of my friends is coming to stay with Mom while I go to the dentist. Then work Thursday and off Friday. And I don't even think we're in line for any more hurricanes at the moment, which is always a plus! Mom has said she sure would like to get out of the house, so if she is up to it maybe we'll go out for a little this weekend. The only place she has been in months is to the doc a couple of weeks ago, and that really wore her out. It's kind of hard to come up with anything she'll enjoy because she is usually out of bed for just a little while at at a time. Bless her heart, she is as sharp as a tack and still wants to be able to do everything that she used to do, but just can't anymore. Can't walk, can't see, can barely be out of bed for more than a few minutes. I'd give anything if she could just enjoy her life. She told me last night that she's trying her best to stay alive as long as she can so she can keep helping with the bills with her little Social Security check. I almost cried. I told her I want her to stay alive to be with me!! Sometimes quality time means just being happy together, and that's what I want more of. Every now and then I have to remind myself to quit being so crabby and impatient and SELFISH. So my goal is to enjoy each other as much as possible.

And on that note, I think I'll go fix a plate for dinner. Thanks for the good thoughts, and hope your Mom is continuing to improve.

Jill

Hi all, just after I finished writing a good long WHINE my internet cut off and deleted the whole thing! Probably just as well. Anyway, I'm glad to hear from everyone, hope the others will be checking in soon.
 ...Read More

Hi all, just after I finished writing a good long WHINE my internet cut off and deleted the whole thing! Probably just as well. Anyway, I'm glad to hear from everyone, hope the others will be checking in soon.

Brenda, I make that same promise to myself over and over again, to spend more quality time with Mom and let the rest just wait. But I tell you, when I get home from work, the only thing I want to do is change my clothes and sit and be quiet. You have to realize that even though Mom really likes our caregiver, I am her very favorite person in the whole world, and her day revolves entirely around me coming home. So she is real happy and I am usually not so much. But I try to put my normal impatient self on hold and be the daughter she has been missing all day. Then pretty soon we're alone and my other full time job begins. It's pretty hard to come up with something that we will both enjoy when she is usually feeling pretty poorly to begin with, can barely sit up in her wheelchair and has to be put in bed, then back up in about 5 minutes to the bedside commode, then back in bed, turn me on this side, no, turn me on that side, can I have something to drink? It's cold in here, get me an extra blanket and my socks. If we are watching tv, she can barely see or hear it so I get to explain it all LOUDLY to her. If I get something to eat (she has already had her dinner), she will wait until I sit down to eat it before asking for something else. Which means my dinner gets cold while I get whatever she asked for and then feed it to her. Then I will sit down to my cold meal, at which time she will want to get back up to the potty, when she cannot possibly have to go, but up we will go, and on and on and on and on....... She still hasn't slept in several nights, but I give her pills to try and instead of closing her eyes and letting them work, she keeps talking to me about what's on tv (so I turn it off) to what am I doing, am I in bed yet? It's just like an endless loop. But when I quit with the poor me, I really know that all of this must be a million times worse on her than me, and then of course I feel guilty. But that brings me right back to the fact that I'm doing absolutely all I can for her, trying to keep my head above water and keep the IRS from taking my house, and going deeper in debt every month so much so that I will never ever get out from under it. But I can't let her know any of this, so I put on my happy face, and start over again every morning, just like I know all of you do, too. I'm so glad I have you to let me whine!

Well, guess I'll put the mattress on the floor and hope that at least one of us can sleep. Please send good thoughts and prayers, I could definitely use them!

Love to all,

Jill

Hi Carol,
I met with the woman I call my 'elder care guru' yesterday and signed some papers which we hope will soon provide Mom with 5 hours, 3 times a week, of cna care, as opposed to just respi ...Read More

Hi Carol,
I met with the woman I call my 'elder care guru' yesterday and signed some papers which we hope will soon provide Mom with 5 hours, 3 times a week, of cna care, as opposed to just respite. Also she has ordered 'consumables' for us: liquid bath soap, lotion, wipes, chux, pull-ups, and I can't think what else. We discussed the Cash and Counselling program, and I learned that my county doesn't have it. Not sure why. Also am looking into 'share of cost', which would be less expensive for me. Unfortunately they would not let me use my current caregiver, must use an agency due to insurance, liability, etc., which I understand. But she assured me that if the caregiver they send does not 'click' with us, they will keep trying until you find a good match, not that I expect that would be a problem but of course it's definitely a possibility. Also she told me to re-apply for food stamps as $10 a month won't even cover the gas to go to the store. This woman has been such a blessing, she knows pretty much everything about what is available and all the details. I'm a nurse and fairly intelligent and aggressive in trying to get Mom all the help she is entitled to, but we are now 19 months into this and have just now found someone who you can actually meet with in person who is so kind and knowledgeable and interested in helping. It is just unbelieveably difficult to get anywhere with the red tape involved, not to mention that even if you can find a program which has the help you need, there is always a wait list, and no funding anyway. I hate to think what happens to seniors who don't have an advocate. Thank God I found this woman who is able to help us so very much. I also thank God for this web site, where I have found new friends who are in the same boat and who can share the tears, and even some laughter. Also you are a great support as well. And I have also found good specific information on here, such as the C and C program, even though I can't use it. I have been telling everyone who might need it about this website, including my 'guru' and our hospice nurse. So thanks to everyone on this site, and hope to hear from some of you soon.

Brenda, how is your Mom? I've been worried, haven't seen a post from you since you said she was having her shunt revised.

Austin, is your husband home? How is that going?

I miss everyone, and continue praying for us all.

Jill

Carol, I went to the web site mentioned here called Medicaid Cash and Counseling. After reading about it, I called my local contact in the world of elder care assistance and she told me who I need to ...Read More

Carol, I went to the web site mentioned here called Medicaid Cash and Counseling. After reading about it, I called my local contact in the world of elder care assistance and she told me who I need to call to make sure that Mom is already on the appropriate waiting list. Of course, even though Florida is listed as a participating state, the program isn't actually funded (imagine my surprise) currently. But, my contact tells me that my Mom 'scores' right at the top on the 'needy scale' they use and when they do open the program she should be right up there. So now it's just sit and wait. We're also on the wait list for a program that sends you $106 per month to help pay for care, which would pay for 1 day that I work. But, it's something. And she said she is hoping to be able to help me out with 4 hrs per week of CNA care. That would be great so that I can grocery shop and do my errands on my day off without paying for another day of our caregiver. But so far, no funds for that either. Maybe soon. And I'm hoping to hear about a second job. One of my friends has promised to stay with Mom for free whenever she is available (she already works full time) if I do get the other job. I hope something will work out. And in the meantime I'm still trying to gather all the papers I need for the attorney to work on tax relief and possible bankruptcy. Something to look forward to, huh? Also, when the hospice nurse was here today, I told her about this web site so she can pass it along to others, and I told her about your book, and she said she has heard of you. And I think it's pretty cool that I'm actually in touch with a real author! :-)

Jill

Brenda, so glad things worked out for your Mom. I know it will make you so happy to see her improving. Any idea when she can come home, or will she go back to rehab for a while?
 ...Read More

Brenda, so glad things worked out for your Mom. I know it will make you so happy to see her improving. Any idea when she can come home, or will she go back to rehab for a while?

As far as Mom and her not sleeping, I tried her on Lunesta a couple of years ago and I think it worked for a while, then not. I'll get some samples and give it another go. Also, she has never been on any anxiety meds except 1 mg ativan prn, so maybe I'll see about trying the valium for sleep. At this point we are both ready to try anything! Her doc (who makes house calls, can you believe it?) who is also my doc has the same feeling about keeping her comfortable, whatever it takes. Mom is still all there mentally and doesn't like to feel goofy or fuzzy, or 'woozly' as she calls it, so hopefully one of those will let her sleep well without a hangover. Keep those fingers crossed! And I'll keep you and your Mom in my prayers that she continues to improve and can come home soon.

Austin, I know what you mean about rearranging the room to fit the hospital bed, potty chair, wheelchair, etc etc. When we knew Mom would be moving in with me after the rehab last year, I had to cut a hole in the wall between her bedroom and bathroom so the wheelchair could fit. Put in a new sink with just a countertop and no cabinet underneath, and a raised toilet and some serious grab bars on either side of the toilet. Unfortunately, she has since become unable to get onto the toilet in there and instead only uses the bedside commode. Also can't get in the tub so has all bed baths. Also, I have recently moved her into the den because she wants me with her all the time, and that way I can still do things in the other rooms and she can see/hear me. I think I told you I sleep on a little mattress on the floor beside her bed, and then move it during the day. The den is very small and things have to be moved in and out as needed. So my mattress is standing on it's side right by my front door! But oh well, you gotta do what you gotta do. Anyway, good luck with the re-doing. It may take more than one try to get things in the best place, sometimes you have to try it out and discover what might work better.

Carol, remember I said I hardly slept last night but it wasn't because of worry? I wasn't sleepy at all today! So I will continue to believe that it's a God thing, as I call it. I know he won't let me down.

Thanks again to you all. It feels good to know people are out there who know and care.

Love to all, Jill

Hello all, just wanted to touch base before going back to work tomorrow. On Friday I took Mom to the doc for him to try and burn the nerve which is causing so much pain in her hand. I think it helpe ...Read More

Hello all, just wanted to touch base before going back to work tomorrow. On Friday I took Mom to the doc for him to try and burn the nerve which is causing so much pain in her hand. I think it helped a little, and he gave us some new pain med to try since she is allergic to almost every one there is. At first she didn't think it helped, and has hardly slept for the last few nights. Tonight she wanted to try it again when she went to bed, and she said later that she could actually feel some relief--yay! So I have turned all the lights out and am being very quiet, hoping she is actually asleep.

I spent a long time this weekend getting all the financial info I need for the tax attorney I am using. When I saw in black and white how much money goes out just for the basics, (food, meds, gas) I could hardly believe it. No wonder I'm in such a deep hole! But I'm doing my best, and hoping to get a second job soon, and as I've said before I have complete faith that God is in control and things will work out somehow. I pray very hard every night, and am fortunate to have others praying for us as well. So good night everyone, will check in tomorrow.

Has anyone heard from Marylyne? Hope she is ok. Living in Florida, I've had to evacuate several times in the past 10 years, and it's no fun at all.

Jill

Hi Carol, thanks for responding. Mom is already on Medicaid, and we are on every program available already. Unfortunately, the only help available is for several hours a couple of days a week. That ...Read More

Hi Carol, thanks for responding. Mom is already on Medicaid, and we are on every program available already. Unfortunately, the only help available is for several hours a couple of days a week. That doesn't help us because I can't ask our caregiver to just leave for that time and come back later. But I did read something on the homepage of this site about a program where they offer you a certain amount of cash each month that you can pay your caregiver with, even if it is your family member. I'm going to call about that next week.

I went to see a lawyer last week about possibly filing for bankruptcy. He is also going to work on getting my back taxes reduced. He gave me some forms to fill out and I'm going to work on them today--they will show in black and white the fact that there is more going out than coming in every month. But even if I could wipe out the credit cards and back taxes, I would still have to go back to using credit cards every month just to keep up with the regular bills, and that's even if anyone would give me credit after filing bankruptcy. It's just never ending. I think you are right that I should tour all the area nursing homes. I just can't stand the idea of Mom being in one. She has had to be in the rehab section of 2 different ones, and they were awful. Well, we'll see. Anyway, I hope we have a better day and night than yesterday. I'll check back later and see how everyone is doing. I'm so glad to be a part of the group here.

Jill

Divabella, I have been where you are and you definitely have to live your own life as long as you can. When my Mom was still able to live on her own, she always wanted to have me to herself. She nev ...Read More

Divabella, I have been where you are and you definitely have to live your own life as long as you can. When my Mom was still able to live on her own, she always wanted to have me to herself. She never liked any boyfriend of mine, and always wanted my friends to be her friends also, rather than having her own. She would almost always 'get sick' when I made any plans to go anywhere. Now she lives with me and I can't go anywhere besides work, because I have to pay someone to be with her and I can't afford any extra hours other than when I go to work. We are practically joined at the hip. You absolutely must have a life while you can. Believe me, things could, and might, get worse, so live as much as you can now.

Brendalou, thanks for the support on the no nursing home decision. I just fear that, at some point, there will be no money left to borrow to pay for her caregiver, and there is also no way I can just ...Read More

Brendalou, thanks for the support on the no nursing home decision. I just fear that, at some point, there will be no money left to borrow to pay for her caregiver, and there is also no way I can just quit work and stay home with her all the time. I have always said that even if I had to sell everything and have us live in my car that I would do it, but of course we couldn't do that. I already can't afford to pay back what I have borrowed, plus the borrowing will have to continue until the end, if there is any place left that will loan me more, and every month is just gets worse and worse. I'm afraid the day will come when I can no longer rob Peter to pay Paul each month, and then what will happen? And I'm almost to that point now. Then there is also the question of, what if she gets to the point that she needs more care than I or my caregiver can provide? I know what you mean about God intervening and taking care of things, and I have total faith in Him, but as I said before I sure don't see any way out of this.

Mom caused nerve damage in her right hand (little and ring fingers and that side of the hand) when she fell in April, and was on a pain med that made it tolerable for her. Then 2 weeks ago she developed an allergy to it, and also to the 2 others we tried after that. Yesterday we got another one to try, and I don't think it gave any relief, but it sure has made her goofy and physically 'floppy' and really uncoordinated. Also very slow mentally, mumbling, not chewing her food. I'm not going to give her any more, that's for sure. Also she has 2 different topicals to rub on the painful area, and they don't help either. She gets obsessed with it and just stares at her hand and keeps showing me where it hurts, and it about drives me crazy. Plus she's not sleeping well at all, which keeps both of us up at night and makes us both out of sorts the next day. I get impatient and snappy, and then I feel guilty, and I just feel like I'm on an emotional and financial rollercoaster. Honest to God, I just don't know what to do or what is going to happen.

Hi, I am new to the site and I have submitted my story but I guess it went to the wrong place. (If you want to read it, I think it is under the topic about the cost of caring for aging parents). To ...Read More

Hi, I am new to the site and I have submitted my story but I guess it went to the wrong place. (If you want to read it, I think it is under the topic about the cost of caring for aging parents). To recap it, I am an only child of an 88 yr old Mom who is bed-bound and nearly blind. She has no money except for a very small social security check. I work part time, and have to pay for a caregiver to be here every minute I'm gone. We have no family. She has been with me for a little over a year, and in that time I've gone through all my savings and have taken a 2nd mortgage on my house. I use money from that every month just to make ends meet, which puts me further in debt, when I can't even pay the bills I already have. I have turned off/cut back/done without everything except for cable tv, because about the only thing Mom can do is listen to tv. The last thing I bought for myself was a pair of sandals a year ago. I have no life at all, just go to work and come home and take care of her. Several months ago she climbed out of her bed and fell, and since then I have been sleeping on a small mattress on the floor next to her bed. She wants me with her every minute I'm home, so recently I moved her (us) into the den so that I could get things done (laundry, kitchen, taking a shower) and still be right by her. When she fell, she caused nerve damage to her hand, and that is one of her 3 topics of conversation: her hand, her nausea (sometimes lasts a couple of days) and her bowels. We are beyond broke, going deeper in the hole every month, and I can't tell her about it, it would just worry and upset her. So I come home very tired from work and spend the whole night taking care of her, then get up at 630am and start over. I only have 2 friends who will come occasionally and stay with her so that I can go to the dr or grocery shop, and not have to pay the caregiver even more. I hope someone will respond because sitting here in the dark on my computer is about all the company I have.