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I am close to having a mental meltdown. Five years ago when my father died we knew that my mother would need care. She refused to come live with me and my relatives had a fit at the thought of moving her an hour away. Now, I am a single mother and have a small child. I fled my abusive fiance and moved back home with my mother for a year and commuted daily. My mother helped me get back on my feet financially and I helped her around the house, cooked, cleaned and gave her money when I could. I planned to stay two months - it turned to a year when I saw my mom needed more care. We've had a hard relationship over the years stemming from questions I asked about being adopted - she pushed me away and neglected me to the point school counselors set up meetings with her. We are fine now. I begged her and the family to do what her doctors have recommended all along - sell the house and move to assisted living. My mom had a stroke which affects her ability to care for herself, drive and her memory. She is a non-compliant diabetic, and has congestive heart failure. I love my mother and feel I owe it to her to be here for her. The problem? My brother who does not even live in this country is holding all the cards. This same person molested me and my cousins and was very violent towards me for years. My mother's sister's children were molested by this man and she still treats him like he's a second son and I'm the demon spawn. These people have been emotionally and mentally abusive to me for years and I hate them. They spent years making fun of me about my weight, being hateful to me in general only to be sort of nice every once in a while. I want to sever ties to them because I am afraid for my daughter (they already poke fun of her hair and her height - she's a toddler), but I need to care for my mom. Even though two lawyers told my mom her best financial option for long term care would be to sell the house. My brother feels that he and his wife should wait, buy the home, pay off her bills and give her the rest. That would be great had they done it 3 years ago! Now my mom is in and out of the hospital because she forgets to eat, won't take her blood sugar, and is constantly being found on the floor and taken to the hospital. I go home every weekend, got her meals on wheels, a new Dr. in my city which I take off work to take her to and it's never enough according to my relatives. Now the nursing home has flat out said sending her home without 24/7 care is going to kill her. My family now agrees that assisted living is best, but we need to wait for my brother to give the go-ahead. Meanwhile, she will come home and live with a relative (who treats her like she's an annoyting piece of dirt, but he's retired) my aunt will make sure she eats during the day and I have been informed that I need to come home Fri-Mon and take her back to her house and relieve them of their burden. First, this makes no sense to treat my mom like a hot potato. I have not seen her as happy as she's been in the past month being active and not sitting there depressed at home all day. Her brother and sister live around the corner and make it known whenever they do the least little thing for her and complain about all the things she can't do for herself. I ABHOR these people, everytime I get off the exit to come home I feel sick. I am applying for Medicaid and VA benefits to move forward (my mom is okay with this so far) but my Aunt told me I am moving too fast and need to wait for my brother - who has not responded in the last months since my mom has been in the nursing home. "Well he has a job" "Well he's in a different country" They have email! Sorry this is long, but I am stressed, feel guilty about not wanting to spend every weekend there and need help."


 
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Hi Ella,

First of all, my heart goes out to you, as you have a lot of things going on in your life that you can't control. Relatives, your mom's health, etc. It seems to me (as one caregiver to another) that you need to first of all, protect yourself and your daughter. As a single mom, your daughter depends on you, so she's your first priority, NOT your mom. Your mom has a son and a brother and your daughter only has YOU. So put yourself #1 and your daughter #2 and your mom #3, which isn't how you're acting right now. You have mom at #1, which is what's killing you.

Decide what you can do to help your mom that won't make you crazy and stressed to the breaking point and that will honor your commitment to yourself and your daughter. Then calmly tell your relatives and your brother what those limits are and STICK TO THEM. Right now everyone is depending on you because you WILL step in and do it all. When you do it all, they don't have to.

Your mom has had advice from two lawyers that she's ignoring. That's OK, but she needs to feel the consequences of not following that advice. If that's tough on your mom, then that's too bad, but you don't have to bear the brunt of those poor decisions. If she won't sell the house, then limit the amount of time you come over and help out. She has other people in her life who can also influence her to make good decisions, it's not all on your shoulders. Let some others carry a part of the weight.

The other thing I'd recommend based on your post is some counseling about being abused as a child (with your mom and brother) and as an adult (with your fiance). It sounds like you'd benefit from some help in learning how to set boundaries with the people in your life, so that when abuse starts, you can recognize it and know what to do to handle it to protect yourself.

You will definitely get resistance from your family because by standing up for yourself and your daughter, you're asking them to assume more responsibility. But if you keep your daughter at the top of your priority list, I think you'll be OK.

Please keep us posted. I hope you get some other answers on here, because I'm sure other caregivers and some of the professionals will have some good ideas too.

Hugs Judithmft


 
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Thank you so much for your reply. I really needed this today.

Yesterday to I went to visit mom, cleaned and did laundry. Today, more of the same. My mom's sister demanded to know when I was coming back. I had called her to let her know where I was leaving Mom's garage door opener and ATM card (my Aun't asked for it to pay for Mom's groceries while she's at my Uncle's). She became irritated and stated that I would need to bring them to my Uncle's house (he lives around the corner). No problem, but wouldn't my Mom want to come home after being in a nursing home for a month to decide what she wants to take to my Uncle's house? Again she wanted to know exactly when I was coming home again (she's been told 3x). After explaining to her that I would be taking a day off (unpaid leave)next week to come home and apply for benefits - it still wasn't good enough. We went round an round with me telling her that I have to make up days at work for the next two Saturdays and I will be home on Sundays. She told me she didn't need a lecture and hung up on me. I called my Uncle to let him know I was bringing the stuff over, he was irritated and asked me why I was bringing them to his home and to call my Aunt back. I'd had enough and left the stuff on my mom's kitchen table. Why must they act like idiots about everything??

I am seeing a therapist and we're working on the boundary issues. I feel strong and proud that I left my ex, but somehow I cannot muster up the courage to not care what my family thinks. My daughter is the best thing that ever happened to me and I don't want her formative years to be miserable. Every day is a struggle with this, but with the support of my friends and being able to share here - I'm hoping it will get better.


 
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I'm so glad you're seeing a therapist to help you navigate these stormy waters. The one thing that may be happening is that your aunt and uncle must be getting up there age-wise too (like your mom) so they may have some memory issues or other problems occuring that impact them and their behavior.

So again, I'd say, calmly tell them what you will do that's reasonable and if they start in, just say, "I'm sorry, I have to go now" and get off the phone. Don't tell them things 3X, don't take the abuse, just state your position and let it go. It gets easier over time, believe me. And you'll look back and think, "Why did I put up with that for so long???"

I used to be a "rescuer", where I felt it was my job to fix everyone's problems around me. My "friends" were happy to lean and dump on me and I was happy to "help" them. I was knocking myself out and finally realized I was doing all of the work and my friends weren't really doing anything to help themselves. When I stepped back and stopped rescuing, guess what they did? The found OTHER PEOPLE to rescue them! They're survivors, just like your aunt and uncle and brother and mother. If you don't do for them, they'll find someone else who will. Believe me, they're not sweating all of this like YOU are. You don't have to keep the world on its axis...you're just one mom and daughter doing the best she can. If others can't accept that, let them stick it in their ear!!! :)

Hugs ella73


 
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Write them ALL your "Letter of Resignation" with an effective date. Get the heck out of this horrible situation. Once u do, someone will be forced to step up and care for her. Obviously, this is not the best for YOU or your daughter. I'm sure this is affecting your daughters well being and we know YOU can't take it much longer. What will happen to your daughter if something happens to YOU. Want her to go to this family??? You have taken enough abuse from them. They know they can dish it out and you will take it. They all seem to be cut from the same cloth. Another thing, if u loose your job, then u will really have a problem. Prioritys my dear, Prioritys.. Take care, be strong, and kick booty...we are here 4 u !!!

Hugs ella73


 
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Thank you for your reply and the advice. It is comforting to know that feeling overwhelmed is not just me being "lazy" or not wanting to "do my part." My Aunt and Uncle are a little younger than my mom, but still up there. Trust me - they've always been this way. : ) Since they won't change, clearly I have to.


 
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SueAnn, I'm working on getting to that place. I wish it were that easy, I think my concern for my mom AND guilt keeps me from doing this. If I bring up the abuse, they'll just shut it down and say that it's in the past and I need to think of my mother.

This week, they had the chance to apply for an Assisted Living waiver while my mom was in the nursing home and they would not let me because my brother could not make a decision. This was the worst move, because now my mom will go home to live with the relative and not be eligible for this waiver without first being on PASSPORT (the at home waiver). Problem is she will have a huge spend down (deductible) for THIS waiver and they don't provide the diabetic monitoring services she needs. So - she now would have to pay $1,000 on top of what she already has to pay for her mortgage and other bills in order to qualify for the PASSPORT waiver to qualify for the assisted living waiver. The key was to apply for this while she was in the nursing home and it would have been a smooth transition.

My mom thinks she's only staying at her brother's for a week or so! I told her this was not the case. My aunt says that if my mom want's to go home and die she should be able to. She does not. She stated that she does not want to sell her house, but if we all felt she cannot be safe at home - then she would go. All of this idiocy because my brother "needs more information." I want to scream and the social worker and Dr. at the nursing home were stunned by this decision. My mom is now at the relative's house. And so it begins...


 
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Ella73,,, My heart goes out to you, what a mess. First off, does your Mother still have ythe right frame of mind to appoint a Power of attorney and why haven't the lawyers you have seen mentioned this? With your brother being "out of the country" seems to me you would be the one appointed. Or perhaps leagl guardian. Do you think your mother would go along with it? The first thing I did when I moved my dad in with me over 2 years ago was get power of attorney over finances nad health. he gladly signed the papers. I have 4 sisters and they are good to leave the decisions up to me. Guess so they won't feel guilty for not helping with him! IF your Mother seems to listen to everyone except you when taking advice then I'd say let them have the job of taking care of her. And with your brother gone what can he do?, besides gripe and hire an attorney. The rsponses you have recieved are right on the spot, you need to quit being a door mat and do for you and your daughter. I know the guilt will be there, but you have to stay strong for your daughter. from the sounds of it, you are the only one she has. Your MOm has several people who want to call the shots but not do the work. Hope this helps, just wanted to let you know you are not alone. I feel at times I am going to lose my mind when it comes to taking care of my Dad 24/7. He has demetia , getting very close to alzheimers, has lost controll of his bladder, is wheelchair bound. About the only thing he can do for himself is feed himself, the rest is up to me. I have to bathe him, dress him, change his diapers and everything else you can think of, brush his false teeth, shave hi, thats the job I hate worse, shaving him!!! You take care and keep us posted on how things are going for you, we all care, and I am very thankful for this site!!!!


 
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rellim: My heart goes out to YOU. You have a lot on your plate and I wish you and your father well. I know that kind of care is demanding. I worked with older adults/disabled/wheel chair bound and, the work is physically and emotionally demanding. Your father is blessed to have you.

Regarding the legal matters: My brother has POA. I could go for legal guardianship and if my mom ends up in the hospital again - that is exactly what I will do, apply for the waiver and move her closer to me. I am in no position to do that before this happens as I have no money for an attorney to fight the entire family.

This weekend, I tried to work, and spend time with my daughter and there 17 phone calls and text exchanges with my Aunt. She was being unreasonable and silly. Guess what? My mom's blood sugar is out of wack - of course it is!!! She didn't need to go home in the first place, yet they thought it was a brilliant idea. My Aunt is making it clear that THEY are doing everything for my mom. I'm taking tomorrow off work to go home for an appointment with my mom. It's frustrating because I used to talk to my mom every day - now my uncle is being so nasty when I call. I actually heard him say, "I'm sick of her calling here."

They resent it so much that I am not there, yet they have tied my hands from the time I said Mom should come live with me 5 years ago, till now with assisted living. Now, they act like I am vermin for not giving up my job and coming home to take care of her. Everyday is up and down...


 
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Ella,don't know why my type is so small and can't figure out how to make it bigger! anyway,,, I know what kind of work you are talking about with elderly adults and wheelchair bound people. I worked for The Area Agency on Aging for 5 years, going to the elderly's houses amd helping them with bathing, doing house work and shopping for them. Then I started working for United Cerebral Palsy nearly 10 years ago. I take care of a girl that has severe CP. She is wheel chair bound, can't talk, her foods have to be purried, about the only thing she can do is touch and object when I give her a choice of what she wants to eat, drink or wear. She is not dumb though. She knows what is going on around her and if only we could figure a way to get it out of her I know she would have lots to say. She laughs a lot. She almost always has a smile on her face, especially when she sees me coming to pick her up from school. I pick her up at 11 and she stays at my house till about 6 in the evening. Sometimes I keep her overnight to give her mom a break or when her parents have to be out of town. She is like one of my grandkids, I have had her since she was 7, she is 17 now and a senior in high school. I also help out with my grandkids a lot. I keep one grandson, age 3, every other week during the day while my son works. Two of them (age 6 and 9) are here every weekend and since my son lives in the back yard, so to speak, of my home I have them here a lot. The other grandaughter,age5, is my younger sons daughter, he only has the one, I keep her about 1 day a week. I really hope things work out for you and your mom. But if she still has her mind and you can't convince her to come live with you or by you, then you might as well quit beating yourself up over it. Try to tell the family that if she were closer you could help more, but as long as they have her with them, it is not in yours or your childs best interest to go there. Also you need your health to take care of your daugter, and stress can lead to so many ailments is scarey. I am really surprised I am as healthy as I am with all the stress I have dealt with not only with my dad, but my grandkids Mothers, too. They are a pain. My older son has given me fits too. He is depressed but refuses to takes meds for it. So when he gets down and out I am the bad person and he takes his frustrations out on me, mentally, not physically. Keep me posted on how things are going with you and your mom. rellim


 
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You have a lot on your plate! Your family is lucky to have you and it sounds like you enjoy your grandchildren a lot! Depression is hard to treat if the person is not willing to take action. Good luck with your son. I do have a suggestion for the child with CP. I'm not sure what state you live in or what services she's receiving, but your county should have a Board of DD or MRDD. Is she linked with them? I worked two years with a young lady who sounds very similar to the one you work with. She had an augmentive device called Vanguard. This device is a keyboard that she used to communicate - it vocalizes what she wanted to say. It was amazing - they're expensive, but there IS funding available for these devices. If you have any further questions - just let me know and I can do some research for you. I do have an update on my situation that I will post in another reply.


 
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Major Change/Update

I took Monday off to take my mother to an appointment. I had called the night before to ask my Uncle to remind my mom to get ready - of course he was nasty about it. When I arrived the next morning, he opened the door and let it slam in my face. I made a joke of it and went to assist my mom. As we were leaving, he barked at my mom to "get a snack for her blood sugar." I went to the kitchen and asked for a baggie. He got really smart with me and I asked him what was wrong.

Things went downhill FAST. He got up, yelled at me, called me names told me he was sick of me making snide remarks to him (he's clearly confused himself with me) and chased me out of the house and got in my face. He's screaming at me on the front lawn telling me what a rotten daughter I am and how I stole money from my mom (she gave me money when my car broke down 3 months ago - half of which I have paid back). I, being pissed at the point yelled at him to back off or I would call 911. He backed up, but not before calling me more names and telling me that no one cares if I'm a single mom because that's my fault that I'm in that position. Just three weeks ago he was fine with me. What's changed is he now has my mom living with him in his space - and feels that I should be at home with my mom. This man never lived out of his mother's house - not ever.

After driving around the corner and having a total meltdown -I took my mom to her appointment. Took her to my cousin's house afterward, told my mom I loved her and if she needed me to call, but I would NOT be coming back.

For the past few weeks, there has been stress, headaches, vomitting, tears, anger and on that day - chest pains. After 37 years of abusive behavior from these fools - I'm done. They refuse to do anything that makes sense (let mom live with me, assisted living and she refuses to). I made arrangements with my cousin where he will bring her to my home on some weekends. My sister-in-law says, "everyone needs to stop being so emotional and do what's best for my mom." - This from the woman whose husband kept is mom from going to assisted living because of a house.

And I'm still not going back.


 
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Good for you Ella -- now stick to your guns and do what's best for you and your daughter.

You've tried and tried to help your mom and she's clearly shown she would rather let your brother and her other relatives call the shots with her care. OK, LET THEM! Good luck and keep us posted.


 
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Ella, sorry to hear you had such a rotten day Monday. I hope you can stick to your guns. Like I said befor talk it over with your mom and let her know this is her decision, where to live. After the blow up Monday what was her reaction? After re reading what you have wrote so far I have another suggestion. This family sounds wacko! Run, run far far away. The people that know you and know the situation will understand. Those that don't know you and the situation ( or the Family members) but pass judgement on you and what you do, do not really matter. I finally learned in life, to quit worrying about what people think. Normally the right thing to do would be take care of your mom. BUT,, not in this situation. All the cards are stacked against you and with them treating you like that, there is no happiness, we ALL NEED happiness! Especially you and your Daughter!

HUgs and Prayers,, Leslie

also remember, the way your mother was toward you growing up,, you reap what you sow!!!


 
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Ella, I forgot to tell you in my last reply, danyelle does have a Vanguard. Very costly but Medicaid paid for it and it sits in her closet. I had her useing some of the pages I made for her at school. But when the batteries went dead her mom just stuck it in the closet and left it there. Also the only time it was ever used is when I had her. Although her mom pushed and pushed to get it, she rarely used it. And we were told when she got it, that in order for her to really grasp what it was for it needed to be available to her at all times, when she was awake. I could go on andon about all the stuff her mother had Medicaid and waiver buy but is not used. It really makes me sick to think of the money wasted! When I worked at school with her the speech teacher and I pushed for her mom to keep the Vanguard running. But after I quit going to school with her they quit useing it there. I use picture cards with her and I have been with her so long I pretty well know what she wants by her actions or sounds she makes. The only time I have trouble is when she cries, which is rare, then I know she is hurting and I have to guess where!
I do want to thank you for caring though and sending me the info. Take care, and hope all is going well for you. Leslie


 
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I have a question for anyone. How would you handle this situation?
My mom lives with my sister, my sister works full time, I handle daily appts. for mom, banking, hairstyling, etc. and prepare lunch for her everyday during the week. And one or two dinners every week and my sister makes about one to two dinners every week and has other people get dinner for mom the other nights. My question is....what to do over the summer.

Last summer from June-October, my sister was gone. So Mom had to be cared for as she will not stay alone. BUT even if someone else cares for mom, she will not let me leave town. This meant that I could not go anywhere on a weekend last summer-fall for five months!! I live in the North. These are the only warm months. Before summer officially begins, my sister is already planning 4 vacations that I know of. And I almost had a breakdown last summer because I didn't want to stay home all summer and fall but ended up doing it anyway. Had one four day vacation in October. I know this an issue of boundaries but how do I set these boundaries with mom?

And this year my single daughter is expecting her first child and may need me. Plus being gone on weekends is really not fair to my husband. Plus it's not fair to move mom to my house every weekend.

I'm thinking about some counseling possibly. But more than that, I need to stand up for myself about having some weekends free but I'm a doormat personality and afraid to speak up until as I said, I almost had a breakdown last year. I feel that it is more than fair to cover for my sister for a couple of weeks in the summer and fall so she can get away and also some weekends but 4 weeks and weekends for five months was just not fair. Because I was also there every week for mom. Do I need to set boundaries with my sister or my mom? And when I complain, I'm told that I don't know what it's like...sure I don't know what it's like to have mom living there but my sister doesn't know what it's like to care for mom every day of the week during the day time, go to all her appointments, lug around her walker/wheelchair, oxygen, etc. Mostly mom doesn't go out at all with my sister anymore. And I need some breaks when the weather is good so I can recharge.

I have been retired for 8 years now and have been the primary caregiver for my dad until he died 4 years ago and had to be taken to the hospital 3 days a week and needed a wheelchair and oxygen and now part time caregiver for mom. The appointment aspect can be very demanding and I am the only one doing that. Although my sister will go if mom demands it. I know that I am lucky to not have mom with me full time as this can be very demanding but I really know that my sister has found a good balance with it and I can't seem to find that balance. And now mom needs someone at the house every day and since my sister works, that means me. As I write this, my sister is leaving town this morning for breakfast and does not plan to get home until late this afternoon, leaving mom home alone and this is Saturday. My sister does this almost every weekend so she is maximizing her free time. SHe also is making plans for tomorrow so basically my sister is gone from dawn to dusk during the week and almost the same on weekends and mom feels very neglected and calls me. (But I do try to stay away on weekends so I can get some break)

Last year I wanted to have a rummage sale at my house but did not have ONE weekend to do it. I'm nervous what this year is bringing. My sister just thinks that I'm a worrier but I'm tired of running every day and would just like to not have to run for an ENTIRE week. And I know this year, I will want to go with my daughter for some of her baby appointments and this may be nearly impossible. And I didn't get to have my other grandchildren over all last summer nor did I go anywhere with my husband all last summer. I can't leave town if my sister is gone..... HELP ME PLEASE.

Sorry, just venting.


 
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Hello PT and welcome, Your life sounds similar to mine. I have my dad living with me for over 2 years now. He needs 24/7 care. I have 4 sisters and the last break I got was last Sept.I left at 10 a.m. Sat and got back at 4 p.m. Sunday! A few questions, ( sorry to be sounding nosey but it is how to figure out what to do), what are your mothers finances like? Does she have medicare or medicaid? Does she have any savings? The reason I ask is this, I haven't had a real vacation in over 3 years, and when I decided to get my fiance' tickets(for Christmas) to the Nascar races in Texas next month,I told my Aunt and my sister who have helped in the past. My Aunt would come over on Wed. mornings and stay with my dad from 9 to 11 so I could go shopping. My sister use to come about once every six weeks and give me a weekend off. Anyway, my sister hasn't been here since Sept. to stay with dad and my Aunt is constantly finding reasons not come e.g back hurts, gotta take so and so somewhere, In Feb. I decided I needed to make different arrangements. I called the nursing home here town and found out they do respite care. My dad is totally against going to a nursing home, but in order to keep my sanity I am putting him there for a week while I am gone. He had some savings when he moved in with me and I am going to use it. It's not cheap but I need it! Another question, does your mother have her mind? Does anyone have power of attorney or guardianship over her? I know it is tough but you will have to make plans to go somewhere, tell your sisiter you will not be available those days and let her and your mother work it out. And don't back down. Also you need to have time with your grand children. At first I cut back on my time with them. but I decided hey, I am not putting them aside for anyone, they are just as important to me as my dad. he has learned to accept the fact that are here a lot. I had trouble with him holleriong and cussing at them at first, but I just flat out told him that was not acceptible at my house. I also hired a woman for 3 hours on Tuesday mornings so I can get out of the house and know she will show up. I use dads money for this. My sisters have all been leaving that stuff up to me, about how to spend his money and such. I don't think they really care as long as they don't have to take care of him. As soon as he moved here while he still had his mind I had him appoint me power of attorney over finances and medical issues.

Don't know if this helped but hope it did, keep in touch and my prayers are with you! rellim


 
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THanks for the answer. I do believe that I have to make some mini vacation plans and leave it at that and let the chips fall where they may. To answer your questions, my mom does have her mind and she is on Medicare and does have a small savings. So the respite care is an option. But I'm sure that she wouldn't like it. But sometimes I think it would be good for her to see how GOOD she has it with both of us running around waiting on her. ANd this morning after I vented, I decided that I am going to take my grandson camping in May or June...but I have to make arrangements quickly or my sister will get ahead of me and I will be home again.
Actually, recently the only time that I see my grandchildren is when they have to stay home from school and several times, it has been the same day that I have to give my mom her shower and now that I go there every day, I need to take them when they are sick. Of course, they are almost old enough to stay here without me for a few minutes. He is 12 and his sister who never comes to grandmas anymore is 15 almost 16. So time with them is getting shorter. But, alas there is a new one on the way and I really want to babysit but don't know how I can do both homecare and babysit. New grandbaby is due in November. SOmething good to look forward to...


 
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Pt , Great that you have a new granbaby on the way. Since your mom has her mind, you can take care of your grandbaby and her, when at home with her. I have a 3 year old grandson that I watch every other week during the day while my son works.The arrangement he and his ex have is great, he has him a week she has him a week. Anyway, I take him with me everywhere. Even to my dads dr. apppointments. He is a good kid, can have his moments but basically minds good when out in public. I also take care of a 17 year old girl who has CP, you can read my reply to Ella to see all I do. Anyway what I am getting at is, the world does not revolve around your mother. Yes, she won't be here forever but you still have a life to live NOW! She can wait a minute or 2 while you tend to someone elses needs. Also have you looked into home health care. My Dad did have a woman coming 3 days a week to bathe him and that was a big help to me. Also a nurse comes once a week and checks his vitals. If I have any questions I can call them 24/7 and get an answer or they will come right out and check on dad. This saves trips to the Dr.s as they have direct communication with the doctor. Medicare does pay for this. Just need a Dr.s prescription. And from the sounds of it your mom should qualify..

Rellim

Hugs ella73


 
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rellim.....Thanks for the info. I guess I could probably handle it. We'll see what happens in a few months. That was good to know about the medicare coverage of home care. I think we soon will have to make some contacts about home care as Mom is needing more and more care. She lets my sister make her breakfast, I do lunch and as I said before dinner is split between several persons. I wonder if anyone has access to a bipap machine that we could get. We move mom's bipap machine 3-4 times a day and it has improved her breathing but we tried to get another machine and could not. Anyway, I think many of us on this website are just overwhelmed and tired at times and this is a perfect place to vent. Thanks again.


 
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Hi, I also have a doormat personality and I am a rescuer. My mother died in 2008. I have a wealthy older sister who lives in Washington D.C. she is an hour and a half away from me. What I learned is once you become the caregiver - you need to state your needs and priorities. I did not have any children. I did not set boundaries - the result? 3 heart attacks and open heart surery. I now have COPD and am on oxygen all the time.

I pray that you will have the strengh to put yourself first. You need breaks from caregiving. Check with a social worker about respite care and assisance with the bypap machine. Keep us posted. Peace


 
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colleen2, It sounds like you ended up in the positon I was headed (physically). I am sorry for the loss of your mother and will say a prayer for your recovery.


 
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PTCruzer: Congrats on the new grandbaby. Colleen and rellim made very good suggestions regarding home health care and respite. The first thing that came to mind was respite. I work with a lot of families who use these service for their children who have intensive needs. Most families go through a period of adjustment. Parents feel guilty for wanting/needing a break and children sometimes may feel like they're being dumped. In almost all cases it works out well after a couple of visits. The key is to do it gradually so it's not like your gone for an entire weekend all at once. I would start now and contact your local Area on Aging - they are fantastic.

Life is short and although we must honor our parent's - I don't think it should result in feeling like your life is over. I've spoken to many people (including close friends) who are caregivers. The one common thread in all of these discussions is that those who felt miserable and trapped throughout their caretaking years, felt guilty for feeling somewhat relieved on top of dealing with their grief when their loved one passed on. There must be someway to meet our obligations and wanting to be there for our parent's without ending up in the loony bin!

Clearly, my situation is a lot different from other on this site, and I am only just now beginning to realize - how much so. However, everyone here as been really kind and supportive.


 
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rellim: That is so frustrating to read! I cannot imagine having to be there in person. Trust me, I see family members in my current job who do follow through on things that could help their children and it drives me crazy. Like you said - Vanguards ARE expensive. I'm wondering if mom can get the funding for another battery - if she has a waiver this should not be a problem. And since her mother may not be willing to assist with this, an in home speech therapist (these are rare, but they do exist) would be able to assist with this. A waiver/county funding would cover this. Even if an agency usually does not provide in home speech - some of their therapist my freelance. Also, if a teacher would be willing to become a provider - they could get paid for doing this out of the classroom. Hope this helps, and if you have any questions just let me know.

This young woman is very lucky to have you as an advocate.


 
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Ella, Thanks you for the compliments... I would like to talk more with you on Danyelle but would prefer doing it by email,, you know patient confidentiality! So if that is alright with you here is my e-mail address,

Lhurst@flippinweb.com

Also anyone else who would like to correspond through email, I would enjoy the "talks' Thanks, rellim


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