Needing to vent: Our parents are like children.

Hello Everyone,
I am trying to catch up on the posts. Welcome to the new caregivers coming to this site. This is a wonderful site. The people here are very understanding and do listen to what you have to say. Many of them have been caregivers for a very long time and have very good insight. This site has helped me pull up my boot straps and get moving on.

In one post it was mentioned about listening to our own voice. I completely understand that statement. It is very hard at times to see through the fog so to say. There are days that I can not see the trees for the forest, but I keep on struggling and findly make it to the other side. I hope this make sense.

I am now trying to re-cupe from the wedding and so is my mother. She had a wonderful time even though it was very hard on her. My sister-in-law was wonderful this past week-end. She told me to enjoy myself and she would take care of my mother. It was wonderful not having to think about mom all the time. Maybe that sounds bad, I am sorry if I offended any one. But everyone needs a break sometimes. Just to enjoy a simple thing as a walk without thinking about the problems or situations at home.
It was funny to me this week (My husband is on vacation). Therefore I left the daily schedule about mom with him. He was the one that needed to be here when the homemaker left not me. That was nice for me, but not him.
I had to go to the dentist for consultation about my wisdom teeth. He decided to go with me. On the way home he was making comments about not having time to do anything on his vacation except being somewhere all the time at a certain time. Well, I was a smart butt, I stated "Welcome to my world" this is on-going and I never get a vacation from it. I said in fact going to the dentist was almost like a vacation for me because I was away from the house and mom. He looked at me so funny, but never complained again or made any comments about his vacation again. Next time he will not take his vacation without us going somewhere so he does not have to be confined to a time limit and mom. So hopefully he sees a little of what I go through day-in and day-out. I doube it.

My daughter and her new husband are staying at our house right now. He will return to Hawaii Oct. 13th. I feel for her not being able to return with him, but she will go in December. She is student teaching right now and can not leave to go anywhere. She is loving it so far. Thank goodness after 4 years of paying for College!
I need to go now my house is quite and I want to enjoy it.
Thinking of all Caregivers and everyone is in my Prayers.
Take care!

mari, even if you continue in your pesent weekend caregiving arrangement, ensure that you carve out a little time and space for yourself, if only reading, or sitting outside, or taking a leisurely walk in your Mom's neighborhood while you are watching over her her the weekend. I care for my 83-year old Mom and the weekend is a time I balance me time and Mom time and have gotten better with it over the years.
Hang in there and research respite care as Carol has suggested to give yourself a break. There are Visiting Angels type services in many states. Recognizing when we are at our wits end is just as important. You can't be effective as a caregiver if you don't pay attention to your own distress signals. Wishing you all the best in identifying solutions. You are in the right place here at agingcare.com! Lots of caring folks here.

Talking with her doctor is a good place to start. You need to look at in-home care or some assisted living situation. Changing places will get hard on her, as well as you and your brother. People mean well when they shift elders between them, but an elder needs a home.

Check with your local Area Agency on Aging or online at www.eldercare.gov. That is the government's eldercare locator, which can give you an idea of what is available in your area. These places aren't rated, so you will want to get references and do some touring, but it's essential to get your mother a place to live. If she does okay at your brother's home, then you can discuss having someone go there to care for her and give her respite. Your county social services is a good help, as well.

Carol

My brother and i have been taking care of our mother since late Aug. shes at his house during the week, I stay with her at her place on weekends, trouble is I'm already burned out, I work all week, go no where, then I'm at her house all weekend, usually without the car until sun. when i take her back. she wants to stay at her house but we don't know if she can, should we talk to her dr. about getting an evaluation done to see if she can or cannot? any ideas would be helpful, thanks!

There is a point, as Cat says, where we can get stuck listening to our own voice and it keeps us from moving forward with action. The line between just staying stuck and venting, and accepting that things are what they are and action is the only thing that can change it, can be hard to distinguish. For each of us it is different. Venting is valuable and feeling safe to say what is on our minds, on forums like this, is important.

Many of us, however, can gain from contacting our Area Agencies on Aging or our state or county human services and asking what help is available locally, so that we are taking action to help ourselves and our loved ones.

Caregivers need to "get it out." That helps them and others. But they also need to really read and listen to what others say, evalutate the advice offered, and carry through where they can. Contacting professionals is often part of this process.

Good words and advice coming from all of you.

Carol

As far as myvoice2 goes, I am concerned that this venting sounds like it has the potential to become a mantra and in time will be very harmful to her emotionally. I would like to kindly suggest that she would benefit from a mentor who can talk to her one to one - either a referral from local Area Agency on Aging or another agency she would respect and feel comfortable with.

myvoice2, if she sees the doctor regularly, it is hard to believe that any doctor would not offer you more treatment guidance on what may be going on. Is it body odor, perhaps, or has she simply hidden something that is rotting in the house? I understand your frustration, but if the doctor has diagnosed her with incontinence that is not her fault and if she has dementia, which would be consistent with the symptoms you have described, she is not doing any of the things you describe intentionally and needs lots of patience and sounds like the best care she may receive would be at a skilled nursing facility that will accept her, which is what you are already working on. Those things do take time as you have pointed out. There is no rushing them, regrettably. It is a mega bureacracy. Our brains occasionally experience memory failures that are hard to fathom by caregivers who may not know what is going on with the person being cared for. Be sure to tell the doctor everything you have described and ask for more medical help until you can place her in a nursing home if that is what you and your husband wish to do. If you can afford to hire a home health aide and/or someone to simply clean the room once a week while she sits somewhere else until the room has been cleaned, even if the smell does not go away permanently, it will give you a break. You might go for walks outside more often, for example, since you are mobile when your mother-in-law seems to be declining in health. She may also have emotional and/or psychological issues that make her neglect her appearance and grooming, or physical limitations that make it difficult for her to groom herself. Surely her doctor has done a full medical assessment on her with all those visits you describe? If you haven't already done so, be sure to tell your own doctor that you are at wits end as a caregiver to your mother-in-law because your frustration is very palpable. It is good to share and vent and also seek medical support when you may need it. For caregivers like me when the going gets rough, I revert to reminding myself one day at a time.

MindingOurElders, the one category I have gotten really good at the longer I am a caregiver is in focusing my caregiving primarily on my Mom as her health declines rather than following my heart every time a situation arises in life where I might offer to help everyone I may encounter who may have a need. While it is great to care for and about others, we are not super men and women. Accepting that every problem in the universe does not have to be solved by me is something that has increased in my life in a healthy way, perhaps because I am now older, and hopefully a little wiser in my older years. It is great for me to be able to even commit this thought to print. As my Mom always says, "Remember! You can't save the world!" She is right.

I just stumbled across this sight and thought I would take a few minutes to vent. 9 months ago, we took in my 86 year old mother in law after my father in law passed away. my father in law hid her condition from the rest of the family for years. We had no idea that she was as bad as she was. We had no idea what we were getting into. She has dementia and doesn't do a dammed thing but sit around, eat and stink up the place. I was the one cleaning things up but had to stop because I couldn't handle the smell any more. My husband cleans her bathroom every day. She pees on everything.

I am 39 years old and had a booming home business and have lost every single client in the past 2 months due to my inability to concentrate and handle business when the phone rings. Two million in accounts down the drain. I am in the height of my career and I am stuck with this woman in my house and I can't get rid of her.

She abandoned my husband in a monastery along with 4 other sons when he was six. He has a great amount of angst towards her still but wants to do the right thing.

It has gotten so bad that my husband who was a recovering alcoholic has gone back to drinking and has just received his third DUI. The smell is so bad in the house ( I can not locate the source) and her insanity has driven me over the edge to the point that I have had to move out.

We have given her the master suite in the house, she eats better than anyone, and goes to the Dr. more since she has been with us that she did in the past three years. she is well taken care of.

I have applied for medicaid so we can get her into a home but have been told that it will be at east a month before she is assigned a case worker. My husband and I are at our wits end. We are on the verge of moving her back into her house and telling his family that they can take care of her because we are done.

I have often wondered what would happen if I just packed her bags and left her at the door of the closest nursing home.

Hello Friends!
It is good to know that everyone seems to be rocking along. I guess that we all deserve a little break. My mom continues to improve with her mobility. She can walk like nobody's business and even bend over and pick things up off the floor! Quite a change from 8 weeks ago when she fell over backwards any time she tried to stand. Of course, we continue with our daily obsessions - the BOWELS, medicine , the bed, etc. I have just decided that there are some things that I can't change. Hopefully, that new attitude will help with some of the stress related symptoms I have been having. I see a gastroenterologist tomorrow for my reflux. It's funny thought, I usually get it when I come HOME from work.

Jill, I'm glad that you are getting some answers to your IRS issues. I think that the unknown is the worst thing there is. If you can see whats coming, you can usually deal with it. Hang in there!

Roxie, It sounds like you are staying busy. It is great that you are back in school. Having an out is a real life saver. So is your daughter still living with you? I remember you said that her husband is in the military and that she might stay with you.


Mari- hang in there! I think we have all been in a place similar to where you are now. While it is important to take care of your mother; it is also important to take care of yourself. I am just starting to realize the physical effects of all this stress. You can'ttake care of her if you don't take care of you!

Carol - thank you for your unending support! You make us such a solid support group. I have noticed that anytime someone is in crisis, you are always right there! Your time and caring is so very appreciated!

Love to all!
Brenda

Hi Mari,
Caregiver's place too much guilt on themselves.

I felt guilty for every little thing that my elders weren't happy with. I was also caring for children, so I was always doing things for everyone, trying hard so no one felt left out, yet I know I failed even at that. There's only one of each of us. People are going to be unhappy sometimes.

You maybe need to look at hiring some in-home care for some of the time, or call your state human services and see if there is respite care available in your area. You and your brother need breaks from caregiving so you feel you have a life of your own.

One thing about caregiving is that we often go into it thinking short term - "I can do this" - and then it turns into months and even years. What would have been okay for a few weeks isn't okay for months or longer.

You're human and going to have human feelings. You and your husband do need a life, and you need time for just the two of you. Please look into some respite care for your mother so you can have a break.

Carol

I can understand where you're coming from, my brother and I have been taking care of my mother for a month and I'm on the verge of a melt down, I cry every day and don't look forward to weekends because I stay at her house and can't get out, I feel like a prisoner, then I feel guilty because I feel the way that I do, but I need a life too, and so does my husband.

Welcome back, Roxie!

Yes, whether they can make it through surgery is always a huge worry. I'm a fan of not doing surgery on frail people unless there is absolutely no choice. Let's hope you don't have to make this decision.
Carol

Hello Everyone,
I am now home and the wedding was wonderful. It was nice to get away for a while but it was also very hectic. But very much enjoyable.
We did find out the results of the Pillcam finally. She has scarring in her small intestines from the radiation treatment many years ago. As long as it does not bother her there will be no surgery, but if it starts in again and again then the Doc said he would have to perform surgery. I do not think she can make it through that, but lets hope for the best.
She can not eat anything that does not digest. Therefore, I am on the computer researching to make sure what she can eat.
I am class now so I will cut this short.
I will try and catch up on all the post.
Thinking about everyone!!
You are in my prayers.

PJ,
I'm so glad you didn't kill your computer. I've had the same thing happen, and my computer won't save cookies for this site, for some reason, so always have to resubmit, but I found what works, so that's okay.

You are so good at remembering everyone's ordeals. This really is the greatest group I've ever worked with.

I've been at a conference on aging and disability, so I've been kind of MIA this past week, checking in when someone was really desperate, but not as much as I like.

Hang in everyone. Together is how we make it.
Carol

Hi Jill,

Thanks for the update on your situation. I am certain it will get better for you - now that you can see where you want to head, and you know the "worst" that the IRS can do to you isn't as scary as you thought (although it is pretty darn bad) I am hoping you can finally start to unfreeze - being frozen with fear of what if is a killer. To answer your question about my experience - I have dealt with this situation professionally, as well as for a family member. Like most of us caregivers, I am a fixer. So I understand the impact of what you must have gone through. And it is scary being the sole support for a parent who needs so much.

Its really nice and I appreciate hearing someone else have the same experiences when they go out with their mom. I will never stop taking her out until it is not possible for her - or she doesn't enjoy it, but it does hurt to deal with the looks, and other behaviours of people who have yet to experience what we are going through. My mom is really gregarious and outgoing - so if she speaks to someone and they rolltheir eyes it breaks my heart. The really beautiful thing though is that little kids gravitate to her, so there is good in exchange for any downers, or dementia slip ups she makes. I just want to keep her world as big & varied as possible as long as I can -

anyway - hi to everyone. happy Thursday.

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 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.

Hi Jill,

Has your tax attorney advised you to file a form 911 - for a taxpayer advocate to help you with the IRS. You may be stuck, but you do have rights and given your financials, you may be able to negotiate a different settlement amount - or have them temporarily mark your account as uncollectable. Please investigate it and let me know how it goes.
take care, don't do anything that you will be sorry for later. (not talking about moving in with BF - talking finances only)

Hi Again,

I wanted to send a big "Thank You" to everyone who wrote to welcome me. It really does help to have people to talk to that are in the same boat. I read everyone's comments, and I wish that I could come up with the magic answer for everyone.

I think it's the total lack of privacy, and the guilt of feeling negative towards my dad that keeps eating at me. I am very afraid of this going on for years, and if I don't die first, then dying soon after. I get the feeling that I will never have a life outside of this. Then comes the guilt from feeling that way. Has a dog ever chased their tail as much as a caregiver does? Around, and around.

I did see my regular doctor yesterday, and asked her to see if there wasn't a way they could put me under for the biopsy I need. I just don't think I can do it awake. Feel like a big chicken. Another guilt trip I don't need.

I've seen other people talking about never getting time away from their caregiver role. Would love to see more discussion on this. Has anyone found some solutions.

I'm so glad you nice people are out there.

Hugs.

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

Hey Jill! We all say the same things because we all live the same things!

Cat - I know your situation is a serious one, but when I thought about what my mom does when peole call our house I had to laugh. The phone is in my name, so when people ask for me, she tells them either that I am dead or in jail! That was very shocking news when my boss called one evening. Lately, I can;t ever get a phone call on the land line. She hangs up or gives false info. And her mind is just fine!

I guess my vent for the evening is that my mother has gotten so spoiled. I know a lot of it is my fault and from being in the hopitals with 24 hour care. However, she has gotten where nothing I do is enough. She is angry at anything I do that is for her. I teach English and have a lot of grading and preparing. Tonight, she wanted to know why they couldn't "grade their own stuff and make their own tests". Give me a break. The thing that really bothers me is that she has no regard for my health anymore. She insists on taking a large laxative every night at 9 PM. Then we are up at 3 AM. I don't sleep well anyway, so I have been operating on about 3 hours nightly. I just can't do it. Her response is , "Why do you make such a big deal out of sleep?" I guess I am just selfish! I have to have some tests for reflux, and her worry is will I be able to ________(fill in the blank )for her. My brother keeps telling me a couple of weeks at respite care in a nursing home might change her perspective, and if this continues, she might find out. Her mind is good, and her health has improved drastically. Mine however, has deteriorated. Any advice, friends?

Cat, I tried to post a response but I'm having a hard time getting them to submit. But I'll try again. The firefighters and policemens associations hire telemarketing companies to raise money for them. The people who call are just sitting in a room full of desks and phones, calling off of lists of past donors plus cold-calling out of the phone book. The telemarketing companies get a pretty big cut of whatever they bring in. They are not firemen or cops, just people off the street making $7 an hour. They don't know any of the fireman or cops, and vice versa. The best thing to do if they call is to say, right off the bat before they even start their pitch, is that you aren't able to donate, and please don't call this number again. And hang up. They will do anything to keep you talking and wear you down, and believe me you won't hurt their feelings by doing what I said. They will just go on to the next number on the list. They get paid no matter what. So calling the association won't do any good because they aren't the ones doing the calling, and probably don't even know who is. Whoever is the head of the association is who hires the telemarketing company, and it's strictly business. If you really feel the need to donate to them, contact the association directly and find out how. Otherwise at least half of it goes to the telemarketing company. I know all of this because my sleazy ex-boyfriend used to work for the company used by our local firefighters, and they were all as sleazy as he was! Anyway, I hope this clears it up for you. Calling the association, or being on a no-call list, doesn't do any good with them. They will call anybody and say anything to get you to send money, and if you ever do, they will call you every year forever. As I said, the associations pay these companies a flat fee for their work, plus a percentage of what they collect. Hope this helps.

Going back to what I said at the start about having a hard time submitting the past few days, it's probably just as well because I always seem to say the same things and I imagine everyone gets tired of reading it. I know I sure am tired of living it.

Jill

I really need to vent about this - Argggh!

yesterday I took my mother out to get a treat at Starbucks, and just get us both out of the house after being cooped up all day waiting for the washer repairman to fix a flooding machine. It's a bonus - exercise from pushing the wheelchair! (distance only, she can walk w/ a walker and does so at home)

when we got back home & were comming down the path, there was a woman standing at my door - - she announced herself as with our local firefighters association (paid fundraiser from the looks of it) and said she was here to pick up the donation check. When I questioned that as I had never spoken to anyone, she started gushing about the lovely chat she had had with my mom on the phone..... I don't know if she called and my caregiver handed my mom the phone, or if my mom answered it while I was walking the dog - but nevertheless,

I was forced to take her aside kindly and explain that my mother has dementia and cannot make commitments like that - but what BOTHERS me is that 1). it would have been obvious if they weren't pressing so hard for money on the call and 2). why would she just "drop by to pick up a check"..... Our local firefighters and paramedics know our home well and my mother is registered as a frail / elderly with medical conditions. I hated being put on the spot and getting the "look" as my mother does like to sport her remaining jewlery and be dressed - while I look like the usual tired caregiver in jeans and tee-shirt. Do I need to post a sign that says she has no money and I am taking care of her at the expense of my own life & future? (my mom was preyed upon and lost EVERYTHING, house, money, etc over 5 years ago)

I will be calling the association to discuss this calmly and nicely - but I wanted to vent first as it seems to me that there should be some type of DO NOT CALL list specifically for people with Alz + dementia that non-profits will honor. I do not discourage my mom from talking to people - and like to keep her included in community events and activities without announcing her dementia so that she can participate without "stigma" - - - Does anyone know of any program like this - or as a group would others be willing to press for it? We are already on DO NOT CALL lists for telemarketing and usually the only people who call are friends / family from out of state. what does everyone else think?

After a year, I still haven't found the link to start a new topic / conversation thread.

Mctavish
Welcome to this great group of women and some men who post notes at times. You will be happy you found this group the encourgement and love here is amazing. I am a caregiver for my husband and my problems are small compared to the others but I learned how to be strong when my counseler told me that I was waiting for someone to rescue me and that was not going to happen- I had to do it myself and to lose my anger. It was hard but got easier as I saw results. Do take care of yourself most caregivers put their health on the back burner and we should not. I hope everything works out for you and look forward to seeing your post -remember we all love you and care about you.

Mctavish - welcome! Please drop the guilt. You are having a really rough time now, certainly not less so than many others. Please get yourself to a doctor. Statistics say that 30% or more of the caregivers die before the people they are caring for. You need to get your breast checked, but you also need help with the stress. Don't be a statistic.

The sarcastic brother just doesn't get it. He doesn't want to. It's guilt that makes him act that way. If he thinks you are "just complaining" he doesn't feel he has to step up to the plate. If it's any comfort, that is very common.

You have stress coming from all sides. A son in Afghanistan, a daughter with a breast lump, your lack of privacy (I find that the hardest to handle). Hopefully, some stress will be relieved if you find the breast lump is benign, but either way, as Brendalou says, you need to put your own oxygen mask on first, or you can't help others.

I was so horrible about asking for help. I totally understand the reluctance of caregivers to do so. It's best to start out that way, but caregiving sneaks up on us and before we know it, we're swamped.

Keep coming back to vent. Just doing that will help some. But please, please go to a doctor yourself (I know - you're sick of doctor's offices) - but do it anyway. This is important. Think of your son. Think of your daughter. It's not just your dad that needs you.

We're waiting to hear back.
Carol

Mctavish,
Welcome to the club! I hope that you will find the support here that I have. First and foremost, your feelings are very normal; I think that most of us have felt the same way many. many times. Sometimes the stess builds up to the point that I feel Like a pressure cooker! However, the first rule of caregiving (that is hard for all of us to follow!) is to take care of yourself first. Put on your own oxygen mask first, or you won't be able to help anyone else! See your doctor as soon as possible. In all likelyhood, everything will be fine. If, God forbid, they find something your brothers will have to step up to the plate. I have one of my own ~ he left for a cruise last week while my mom was in the rehab recovering from brain surgery. Too bad for him that he left out of Galveston:) In answer to your question "which is harder..." I think it is the guilt and stress. Now that my mom is home, I am making a concentrated effort not to let every comment she makes upset me. I try to give a noncommittal answer and go aboput my business. Right now that just confuses her! She can usually pull me into an argument. Hang in there and please keep in touch with us. Together we will survive!
Brenda

Hi

This is my first posting. I'm not sure how I even stumbled upon this sight. Desperation, I guess. I feel so ashamed about even venting anything here, because I have read through alot of the posts, and I know I have it easier than a lot of other people here. I think I just need to talk.
I have been caring for my father in my home for about two years now. Before he moved in with me, he was in a care center for about a year, following a nervous breakdown. When he had the breakdown, since I was the only one of his three kids that lived in town, I spent many nights driving 70 miles round trip to sit for hours each night in the mental hospital, because we didn't want him to be alone. While he was in the care center, we built a suite onto our home for him to have his own room and bathroom. He now has privacy, and I have lost all of mine. There is nowhere in my home that I can go, that he doesn't end up popping in to see what I'm doing. Everyday seems to revolve around making his meals, and constantly worring that I've done the correct shopping to have everything he needs. I wish I never had to think about food again in my life. I am in constant discomfort/pain from a car accident that occurred one afternoon while returning from caring for my father (before he moved in with me). My younger brother doesn't have anything to do with the care for my father, he is too busy working two jobs to keep his family afloat. My older brother takes care of the "business" side of things (bills, etc.), and comes to visit for about 2-3 days each month. He lives out of state, and the visits usually consist of a couple hours taking him out to lunch. My older brother will not see the stress I am under, and when I try to explain it, he can be very abusive and sarcastic in his emails to me. My oldest son was sent to Afghanistan a couple of months ago (stress), his wife is at home with their three kids in another state and she tends to get very depressed (stress), my seventeen year old daughter has a lump in her breast and we are going to a surgeon soon to see what it is all about (stress), the same week she was diagnosed, I was told that I need a breast biopsy and I just can't make myself go because I feel that if they find something I won't have the time to deal with it anyways (stress). I feel all the time like I am a balloon about to explode. Sometimes I think that by the time my father passes away, if I am still alive, I won't have any life left. Then, like I said, when I have these thoughts, I feel like the lowest person on earth. I don't know which is harder, the caregiving or the guilt trips. Thanks for listening. Bless everybody.

Hello everyone,
Glad to meet you Jill. I to am an only child taking care of my mother. My husband is good enough to be the one to say bring her to our home. He is a big help at times, but does not understand it all. He is not the primary caregiver. My mother has a brother that lives just down the road (we are rural) but it is just like a block, he and his family drives by everyday and never stops to see mom. They have not spoke in many years, I do not know what the problem is because mom was the one that always went to their house. I guess it is a long story. That I will tell another day.
The wedding is in two weeks. It is my daughter getting married, it will be a destination wedding in Gatlinburg, TN which is about 10 hour drive for us. I hope it will be pretty, I am concerned that is might rain because of the hurricanes coming in down south they usually contiue in our area with just rain.
Her husband to be is a Marine and just got back from Iraq at the end of August. He will be home next week-end. Then Sept. 27 will be the big day.
I am looking forward to this day. I just can't believe she is getting married.
She is student teaching right now,(She plans on teaching grades K thru 9th after graduation in December of this year) therefore when he goes back to Hawaii in October she will have to stay at home until the end of the semester. I feel sorry for her not to be able to go back with him.
Then my baby will be moving to Hawaii in December of this year to live for the next year. I hope sometime in there I can go and visit them and definetly visit Hawaii. :) :)
Brenda,
I am so happy that your mom is coming home in a wonderful condition. It has been a long few weeks for you and her. But it sounds like she is coming along just fine and doing very well. Now you can rest and will not have to be at the hospital or rehab all the time.
Thinking of all of you each and everyday.
Take Care

When you said this country has to change the way it treats its elderly, you said it all. It's a disgrace when people like you have to go through all of this financial stress to take care of a parent. I've struggled to support a son with health issues, too, so it's no just elderly - it's our whole health system. Bless you for your dedication, Jill.

Please do remember that promises to "never" put someone in a nursing home aren't a good idea, as a health issue could force that. You said it in love, and meant it. Hopefully, you will be able to stand by that.

But if the time comes when you have no choice, don't berate yourself. You will have done your best, and then some, to live up to the promise.
Blessings to you all,
Carol