I moved my mother into my husband's and my home in November of 2005. She had fell at home and broke her hip. She was not able to live on own any longer anyway. This gave us an excuse to move her into our home. She was a very independent woman before the accident, but things have changed in the last few months.
Her short term memory is not good at all any more. She can not wheel herself around the house any longer.
She just got out of the hospital back in June about a 2 week stay with a blockage in her colon and then she contracted VRE. That is not fun to have in the home. I felt so sorry for her.
I am starting to have crying sessions it seems like every other day anymore. I do not see my mother any longer I see a person declining quickly. I am feeling overwhelmed and I don't think my family sees it. I have told them I need to get away for a few days, but that never seems to happen. No one has time to watch or be with mom except me. I am the only child so this is all on my shoulders. Her brother is not any help they have not spoke in several years now.
I do not know if I am just going through a stage or if I am starting to get depressed. I am with mom almost 24/7 except when a homemaker comes in daily. A person can go to Walmart just so many times to get out of the house. I seem to have lost my friends because I can not get together with them anymore.
This on-line discussion is a life line for me. This way I can communication with people and see how they handle different things that come up in their caregiving also.
So if anyone has advice please let me know how to get myself under control.
Losing Control
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
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.
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
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.
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
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
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
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.
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
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
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.
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!
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
You sound so upbeat - glad things are getting better for you, and your mom.
Nothing you say is ever boring - even if it is just taxes - - - you have a way with words.
I did want to share a story about a recent outing - my mom was entranced by a PBS tv show about a new stage production "Walking with the Dinosaurs". As luck would have it, there was a night that the show was sponsored by USC and Conquest Fund - an NPO for dementia / cognitively impaired people & their caregivers, so I went ahead & bought tickets - when we got there, my mom was treated like a VIP - not only were the seats great, but there were others just like us in the handicapped section. Seeing so many of us caregivers with our family members at a large event was so nice - and my mom enjoyed the show as well as getting a big kick out of the whole event. It made a world of difference for me too - going out to a mainstream venue without any worries about handicap access, or people's attitudes. A mini-vacation!
hope everyone is well
Thanks so much for your thoughts. I think there needs to be a balance between feeling safe to truly vent without judgement, so people can get out some frustration, but I also agree that we have to be able to find our boundaries and then move on toward making it work for everyone involve, to the best of our ability. Sometimes that means getting outside perspective from a professional in healthcare, a spiritual advisor, or a trusted friend who can see the whole picture. I hope you continue to be an active part of this forum, lending your wisdom and spirit to help others.
Carol
You have no idea how much your compliment meant to me - I'm a little teary because usuallly when I post I dont see feeback from anyone.
I am back to vent again about an approved medical supplier that mad me incredibly angry and sad and frustrated.
I have worked since April to get my mother an authorization for a home testing device for PT/INR (people on blood thinners like coumadin need to test - just like diabetics need to test for blood sugar). CMA finally approved home testing devices be covered for patients with heart conditions like A-Fib. Boy was I excited!
I pursued this because each time my mother needs to be tested it involves a 1/2 day trip to the doctors office to basically have a fingerstick test and the wait for results. It is wearing on her and affects my worklife - - another burden that caregivers have to bear. I got her doctor to write up a prescription, found a vendor that would take my mom's Medicare HMO and got an authorization from the IPA....when the sent back the authorization, the IPA specified another vendor that was contracted with Blue Shield of CA. Great! I contacted them and had to go through another round of paper work and another prescription, but it looked like all I had to do was wait for the device to arrive and schedule an appointment for training -
Surprise. The vendor, Tapestry Medical said that my mother was "not covered" - but they would as a *super special courtesy* give me a discount for *CASH* payment - when I called and spoke to a supervisor, she told me after alot of hemming and hawing that the real reason was even though they are the contracted with Blue SHield of CA - they did not take the 65+ Medicare HMO because Tapestry Medical could not *BALANCE BILL* the patient to make up the cost difference from their contracted price with Blue Shield.
I have given them until Monday to get back to me, as I know how to fight this type of thing, but it still gets to me in private. 7 months and still waiting because the of the vendor. The only reason my mother will get this testing device is that I am willing to fight until it happens. But many seniors and sometimes even their family members who dont' have someone who knows the system and is willing to contest what they are told will either pay or go away - something has to be changed in this system.
It seems to me that if all of us caregivers put our foot down as a group we could stop some of these practices. I am so tired some days - what have allowed to happen with our healthcare system?
The problem, as your say, is that we (even you, and you know how to jump the hoops) get so worn down from fighting. Our health care system is a total mess. I've written about it as a mother of a son with many health issues, as well as the caregiver to seven elders. It's mindboggling.
Keep up the good fight and know we are thinking of you and look up to you for your courage and strength. I sometimes get tired of hearing how "strong" I am, as if nothing bothers me and I don't get tired. I'm sure it's the same for you. Yet we need to soldier on.
I talk with people in Congress about health care issues, and it's not like they don't know that our system is broken. Many businesses that are benefiting from the system pretend to care, but are just plain greedy. It's very frustrating, to say the least. It makes me angry, and I don't get angry about many things.
The best we can do now is get out and vote for the candidates we think will help our health care system the most, and help our elders the most - and our disabled.
Keep the faith, Cat, and please continue to lend your wisdom and experience to all of us.
Carol
It was good to see your post-I missed your input and are very sorry you are having so much trouble get the testing device for your Mon and good for you for fighting for it it is horrible what the insurance companies are allowed to get away with and it is great you were able to educate us about this machine. My problems are small compared with you and the others- I wish spouse caregivers were on this site but I am able to pray for you all and maybe be of some encourgement and comfort at times, take care
The "only" way I get through my life is with the Lord. I don't totally understand faith, because I want it done now, I do know that God understands each of our situations and He IS working behind the scenes. Like last week, by a fluke, I met a gal that works at my same company, we have so much in common and she lives in the next neighborhood. My electric lawn mower batter wasn't charging and guess what - she has the same lawn mower & she let me borrow her battery. She invited me over Thanksgiving to go to a weekend spa - room and board paid - just pay for any "special massages, etc" I want! THAT is what gives me chills - little tiny miracles -- us finding each other through this internet. Able to support each other and hold each other up. xo xo Sandi
All I can say is I give thanks everyday that with all of the life challenges you have juggled, and continue to juggle; you created and continue to moderate this site. Offering us this safe forum is *so huge* I cannot put into words how much it helps me thoughout the days.
To Austin, Sandi, Roxie and all the rest - I read your posts and feel connected in a way that is very special. We are all better, smarter, stronger, kinder, more resilient and happier because we have eachother and this forum. I am sending a virtual hug to all of you!
Thanks for letting me be part of the group :-)
Carol
I just found this place a few minutes ago and looking for help also.