Needing to vent: Our parents are like children.

This is my favorite thread. You all understand the anger, resentment and frustration. Followed by the guilt for feeling anger frustration and resentment. I know its not rational but I am truly offended that Gramma doesn't recognize me. She knows my Mother and Brother both of whom barely come around, but My Nephew and I who do all the heavy lifting she doesn't know from Adam. I know its crazy and I will get over it but today it pisses me off.

O, how my heart cries for all of you, and for me. We're in the same boat, and the waves are rocking. Grief, anticipatory grief, and helplessness. We try to help, but nothing satisfies. They flail at the wind, knowing not what they are fighting, and not knowing that we are fighting for them, and for ourselves. Sometimes the waves seem they'll consume us, but we find the strength to carry on. I worry more about the calm before the storm, because it seems one's always brewing, though I don't worry much, as one is always just around the next corner. Thank God we have this site, and each other. Kind of like peace in the midst of the whirlwind. The captain holds stays the anchor, and quiets the raging sea. One day, I pray we look back, and see how well we sailed.

Thanks for sharing your thoughts, ladies. You write what I cannot sometimes. Never be ashamed of that. You tell my story, too. I feel strengthened by your presence. Thank you. Take care.

dbrown,
You are so right. My brother never comes to see mom unless it is a holiday and he gets a free meal. Her own son wants no part of her care. Mom does not understand money and has no idea what it costs to care for her. Thanks God we have a trust, but that too will be gone someday. The burden is lest to me and my husband. If I had to do it all over again, I would have had an agency all along and no private care that wanted cash. You can't account for that. Now I have to wait 2more years for the 5 year look back to kick in. Still dear brother wants no part of her. How sad. She has been with us for 3 1/2 years and it feels like 20! What I hate is being treated like a servant who does her bidding. She needs an attitude adjustment. She treats the hired help better than she treats her own daughter! I know she is frustrated and angry for what she has lost and can't do anymore, but it is not my fault. We are selling our house to move to a 55 and over so that we won't end up in the position she is in. I am a quick learner!!!

i feel a little guilty saying this, but, it feels good to see so many people i can relate to. anyone else just looks at me like i am an alien and wonders why i am doing this. i wonder that sometimes too, it really gets lonely, i have been doing this a long time, but i feel it is the right thing to do.

i use to place pictures of mom around in her younger days to remember her. pretty, vibrant, always doing for others. the other day i came across a picture of her from after my dad's stroke; a church directory picture showing a still lovely little old lady becoming frail. i cried. now she is 90, totally helpless and bedridden for the past 4 almost 5 years. she has one visitor for an hour on sunday, it upsets people to see her as she is. how sad for them.

this is hard and unless you have done it you have no comprehension.

You may already have done this but if not, contact the Area Agency on Aging in your county. You can look it up online or call your local directory assistance. There is help for caregivers in every county although how much help differs in each part of the country. Some Agencies on Aging have resources for caregivers such as "respite services" where your mom could go to a nursing facility for a week so you can recharge your battery. You'd be surprised at how much this kind of stress zaps your energy and a week off may be just the thing you need. But that would be just a start:there may be other programs that would make your day to day life a little easier. The people at the agency on Aging are aware of the programs that are free or sliding scale based on what your mom could pay. Caregiving is very difficult:finding help in an on line community is a great first step: keep reaching for all the help you can.

Dede its ok. sometimes you just need to say it outloud to get it out of the space. My mom is dying of cancer and my kids and I are taking care of her and we go thru the same stuff. I look up at god when I hear here telling me about the chicken breast we should cook for christmas dinner this year......I love her but hope we dont have to go thru that this year. I know I am going to hell....I love her but I have said good bye so many times ...and she keeps bouncing back. It is what it is......and somehow you have to take care of you and your kids first. Boundaries are your friends......I would be lost without my kids they keep me so on track......Nothing seems to make her happy enough, and you never quite do it right. So I surrender! I never will do things quite right. lol. I just sit there sometimes and am there. Let here spin her wheels and do what she needs to do. Some days I have to remind myself that SHE is the one who is dying because some days it feels like I am.

I have written off and on for the past six months or so.. and as was stated previously, I only seem to get on when I am at my wits end. I have been told to set boundaries and have been doing pretty good at doing so. My mother does not live with me, so I feel very lucky there!
I was sick this weekend so was not able to visit her. I did manage to take her laundry to her and pick up some groceries, but she was not home. Sunday, I was down out and she called me several times to tell me she was hungry and bored and why wouldn't I come and see her. Now, she lives in a retirement community, she had the choice of going to the clubhouse to eat and then watch a movie or play cards, but she chose to sit in her apt., so she could call me and find out why I wasn't there. When my husband went out to get take out for us..she cried that he didn't bring some to her (he can't stand being around her).
Today, I'm at work (I'm a teacher) and she called me on my lunch hour (30 minutes) to tell me that she has found a lump on her rectum, knows that she is dying of rectal cancer and I need to leave work and come right away. Keep in mind, that no matter what is wrong, real or imagined, she tells me she is dying of cancer.
I told her that we have a doctor appt. next week and it can wait until then. She then begins screaming and yelling about how I don't love her, what a terrible daughter I am, why I always seem to put my kids and family before her when SHE should be my TOP priority.... I wound up hanging up on her and going back to work...
This is pretty much constant. She thinks I should be her top priority and resents any time that I spend away from her. I have been spending more and more time away from her, cuz no matter what I do it is not enough and we always end up fighting, but hten I have to deal with the phone calls about how I could do this to her. My kids and husband can't stand being around her bucause she is so negative, cries all the time and will only talk about what we have all done wrong, or what we are doing wrong. I am 51 years old and have yet to enjoy my live and my kids, who are 13 and 17, since she intrudes on every aspect of our lives..
Sorry, about this, but I really needed to vent today. I feel so lost at times.. and then have these crazy thoughts, like when she says "I'm dying of cancer" and my first thought is "how soon?".. Sorry, can't help myself today.
Dede

Set Boundaries. Many of us have learned that one the hard way. For example: Mom knows that the kitchen is closed at 9:30pm and that bedtime is 10:00pm. She can watch TV for 1 hour and then, lights off. I need my sleep. Also, no getting up in the middle of the night!!! That is what disposable underwear is for!! If she wakes me up, I will look for other arrangements for her. I have insomnia and she has to respect my right to sleep.

Also, no complaining that I have people take care of her so that I can have a life. She does that and out she goes. I sound so cruel, but if you don't, they suck the life out of you. We just had an argument: "You said that when I came to live here you would take me shopping and that we would go out every week!! " My response : "if you don't like it here, leave! You didn't have arthritis, Parkinson's or incontinence when you came here. I am only one person. Maybe your son will take you out!! Oh, that's right, he doesn't even come to see you! " Case Closed!!!!!!!
I love my mom, but I will not let her treat me with disrespect or like a doormat! She has a beautiful home to live in, surrounded by her own things,great people to help me take care of her and a son-in-law who agreed to let her come and stay with us.
So, you need to decide what will make YOU HAPPY. Because if your not happy, you can't continue to be a caregiver and protect your own health! Good Luck.
Linda

y'all are great!!! I've been surfing through all the posts and so many reflect what I am going through. I started out giving my all to my friend and it's never enough. I look at it through her eyes and I know that she is scared and humbled that she can't do for herself anymore. Enough is enough though. 24/7 care is unrelenting and her demands are over the top.

Question: How do you finally put your foot down without getting angry? I am at my boiling point.

Roxie, you may be experiencing a 'low grade depression'. Find a mental health facility that accepts sliding scale fees (2 bucks an hr)
and talk to a psychologist who will determine what is best to re-float the ship. After 19 years I became stuck, and this is what helped me. Continue to do your best! Jerome

Lovingdaughter good for you for standing up for yourself I am so proud of you we all have to learn not to let others take advantage of us I did late in the game my counsular told me I was always waiting for someone to recuse me and it was not going to happen I had to do it myself which I did and was so surprised when others listened to me-I always felt I was the one wrong.

My mom makes me crazy. She just suggested that I take her food shopping with $100.00 so that she can buy lots of food to cook ( that means I cook) for a dinner that my cousin is coming to. Have seen him 3 times in 40 years!!! When I told her that we are getting take-out she was aghast! I said," Are you standing in front of the stove cooking for 10 people while you are trying to stage a house to get it ready for sale?" She shut her mouth. Pizza anyone??????

I am just trying to imagine us, this whole subculture of people in america standing in our showers everyday just crying. We are all out there silent and just plowing on every day trying to make it work. Because we love our parents and want to take care of them whether they like it or not. Bless us all!

beyondfrustrated,
Listen to Austin. She has had lots of experience. We all have had some on one level or another. Get the paperwork rolling and leave nothing to later! Austin is correct when she said that the socila worker needs to do her job. You can supply lots of information, but they need to do the work. Good luck and God Bless.

I agree you need to get him out of your home and where he can get the care he needs he will kill you and then where will he be if he has funds he will have to use them for home care or to be placed and if he has none he will need to go on medicade and do not let them make you do the leg work it is up to the social worker to get that done if you can get your hands on what is needed do it if you can not let them so it -they did it for my mother in law she had destroyed all her papers out of spite somehow she thought it would get me in trouble-she hated me- but when her funds were gone the nursing home did it all. He may know what he is doinf since he gets food at night but do not let him bring you down.

Get him out of your house. He needs more care than you can give. There has to be an alternative. You deserve better than this!!!!!!! Have you had a Geriatric Assessment for him??? Call your hospital and make an appointment as soon as possible. God Bless you.

Haven't posted in awhile. I usually only do when all hell is rloose and I need to come on here and read other stories.Siting here on Labor Day (appropriately or ironic I guess) still dealing with dad. There seems to be a pattern of two weeks of calm and then a week of hell. Guess which this is? He has been doing ok here and there, but I feel like a damn cockroach--it gets worse and I adapt--then it gets even worse and again I adapt. When will it end? I've read a couple of the most recent posts where the caregivers hope that it will in fact, end. That is how I've been feeling these last few days. This needs to be over--it's the worst thing I've ever dealt with. Saturday he informed me he would no longer eat. He did, late at night of course when it's fun to disturb the household. He's been acting very weird again-taking off his pants and briefs which I hate hate HATE. Piss on my carpets, crap on my bathroom walls. I have to constantly buy bleach and lysol. I feel he is slowly destroying my house. I'm so angry right now, but I figure maybe banging it out on my computer might make me feel better. I've also read where some of you have had issues with parents that have controlled or tried to control you throughout your adult life. I feel the same way with that also. always in my damn business giving me some self righteous speech on how to live my life. I couldn't wait to be away from him, then my mom dies (20 years ago). I started codling him and I am deeply regretting it now. He never moved on and always relied on me for everything. He is now a sick, demented 114lb 86 year old man who couldn't punch his way out of a wet paper bag and he is STILL running my life. What the hell happened? As I have stated, I am an only child and I am stuck with this. My daughter is the only one who helps me. I have checked to VA benefits and they only give me 4 hours weekdays and they made it clear that they would not help in actually getting him out of my house for a few hours (which is what I really need) I have him set up for respite in late October so my daughter and I can take a trip to Arizona. What am I going to have to deal with when I get back? Will he die when I'm away? Then I'm going to be guilty. I feel absolutely trapped--it's awful. I've been good about crying, but as I type this I cannot stop. He will not SLEEP for some reason. He has been up for 36 hours. I have given him tranquilizers and they won't work. He will eventually fall if he keeps this up. I can't sleep either of course because he's at the height of crazy right now and I cant reason with him. I know a home has to be the next step. I have had him in my house since January and I feel that I've aged 15 yeas. Anyway, thanks for the vent and the posts--misery loves company

Please don't any of you feel "terrible" for your thoughts. You are normal. Your thoughts are normal. These are tough issues.

The five year look back for Medicaid is very real, but that doesn't mean no money can be spent for your mother's care, txmaggie. Keep good records of the money so that it's obvious where it's going. If you need to spend very much, it's best to get an attorney's advice on how to document it. But it's for her care, so there’s no reason not to use it.

Thirty percent (I've read higher rates than that) of the caregivers die before the people they are caring for. Many marriages (I don't know statistics, but it's a no-brainer) are fractured by the strain. There is no doubt that you need time for your own lives and if the elder has saving or money that can make that possible by paying for some care, that's what it's there for. Just do it so that you won't have any legal problems down the road (with Medicaid).

Vital is the right word. Also, txmaggie. please do try the doctor again, or see another one for a second opinion. This doctor may not know the stress of caregiving. Some are clueless. I'm not saying you absolutely do need medication, but the symptoms you describe sound like depression, and if you aren't getting help, a second opinion may not hurt.

You are all wonderful in supporting each other. It's so great to see this happen.

Carol

How are others dealing with the death of their spouse?

I hope you do not think I am mean or unfeeling but go ahead and spend her money for care as needed and you getting some time away is NEEDED and when her money is used up she will need to go on medicaide-you do have to take care of yourself and your marriage if you get more burned out who will take care of her-if you are able to join a caregivers support group in your area you will here that again and again one of my friends goes even though her husband passed a year ago and she wants me to go-mine passed two months ago and she thinks we can help others-believe me only you can help you -I had tolf others for two years taking card of my husband was too much and every preteted not to hear but when I said I can not it any more others jumped in and agreed and he was going to stay in anursing home after his 17th stint in rehab but got very ill the day after his insurance ran out and died 3 days later. I will never again not listen to myself and do what I know is right for me-you have a right to a life of your own and not just being a caregiver 24/7

Lovingdaughter, thank you for your suggestions. Actually I do have home health help, a nurse 1x/week, aide for bathing 2x/week. They are here for less than an hour, and it takes me an hour to get anywhere, so I still can't leave. However, I can (and do) turn the monitor off while they are here for some quiet time. Financially she doesn't qualify for any more help. I thought about having the ladies come more often but I don't want to use up all her money now, because if she gets really bad and I need a lot more help I will need the money down the road.

Carol, as usual you are wonderful. Actually Mom's nurse suggested I go to the doctor for some help for me, which I did. He said I was suffering from caregiver burnout and ordered a provider for mom 5 days/6 hrs per day. However she can only get that through medicaid here, and she doesn't qualify for medicaid because of her savings (and there is a 5 year look back, ouch). I asked about an antidepressant and he didn't think it was "indicated at this time". I should probably go back and tell him the provider didn't work and try again.

Oneandonly, you are not terrible for not missing her and hoping she won't be around next June. I totally understand what you are saying, as I feel the same way. Mom fought me on the respite care thing, too, and also said she didn't want to go back, but sorry, no choice for her there. A minister told me that it is VITAL (her words) that my husband and I take time for ourselves and that we should do the respite thing more often. Interestingly, she said that in caregivers they see a very high rate of fractured families, and surprisingly, the caregivers dying before the one being cared for. I don't want to be in either statistic group, and I bet you don't either.

I am so thankful we are here for each other. Nobody else can truly understand how we feel. Thanks to all of you for listening.

Hi Ladies,

Just wanted to let you know that I sent my mom to respite at an ALF last month for 4 days as we had an out of town family wedding. She survived but let me know that she would not go back. She had a ton of reasons......too long of a walk to dining room, too depressing (too many old people) and food was ok (she hates my food). I called her everyday and she kept asking when I was coming to get her. Told her the same answer all the time. I had a great time and didn't even miss her. That is so terrible of me isn't it??? For a few days after she returned home it was ok, then back to the same old routine. I told her that we have another wedding next June out of town. She said if she is still here that she will stay home and someone can just come and check on her. She thinks she can take care of herself but she really needs someone to more than check on her. I hope she isn't around next June. There I go sounding terrible again. I guess I just want my life back again. It seems that will NEVER happen.
Thanks for letting me vent.....
oneandonly

Services depend a lot on the state in which you live, but checking for Veteran's services is great idea. Also, check your state's Web site under aging services to see what else is available.

You aren't whining txmaggie. I'm so glad you can vent. You've gone above and beyond what most people would do, considering your relationship with your mother. It's no wonder you feel trapped.

Have you thought of seeing a doctor for depression? It sounds to me like you maybe have clinical depression, brought on by your situation. You may need some medical help yourself, and while doing that, you may find a way to get more relief from your mother so you can have a life, too. This isn't a good situation for you.

Adult day care would be great, if you could get her to go, but being out in the country makes that harder. It's good that you have some seniors coming in, but you need more than that.

I hope you will get a checkup yourself. That could lead to more care all around.



Carol

txmaggie,
You sound just like me. We have a similar situation, but I do have more help.. I made sure that when we sold mom's home that all the money went into a trust for me to use to care for her. If not, I would go absolutely nuts!! Can you get more help? If her finances won't warrant that, can you get free help from the hospital and social senior services?

I have a nurse coming this week as part of the team that evaluates her need. If she physically is in need, than we go on to evaluate her financial need. It is a start. Also, was your dad ( or mom) a veteran? You can get services too. If she has had a change in her physical condition, a fall that the DR. is aware of, you can get for a time period Visiting Nurse, occupational therapy and physical therapy at no coast to her.

Call the hospital and have a geriatric assessment( no cost to you) If she is in need of services, you will be surprised at what they can offer. In January the funding starts all over again, so get in there now and get on the list. YOU DO NOT HAVE TO GIVE UP YOUR LIFE!!!!! Good luck. Let us know how you make out.

This thread started out as "needing to vent", which I do. Over the year+ that this thread has been going on, there's been a lot of venting. I've read through a lot of it and feel guilty about feeling sorry for myself. So many of you have it far worse than I do. Mom lives in her own apartment in my house. She is 92, declining, not needing a lot of physical hands-on care. It's just lots of little things all day long, not being able to get her hearing aide in by herself, fixing all her meals, laundry, checking on her, checking on her dog. She has a tendency to fall so I can't leave her alone. Like many of you, I've given up a job, friends, lifestyle, just to keep her out of a nursing home. It wasn't even a promise I made, but I'm trying to honor her wishes not to go into one. I moved her 2000 miles away from her home and friends to get her out of a bad living situation, and all I hear about is how I wouldn't let her keep her stuff (she kept some but as old folks do, wishes she still had this or that depending on her mood) and how she is so lonely. But she won't do the senior centers, hates them. I have a couple of ladies staying here two days/week so she can get socialization, as I am so burned out I can't even sit and talk with her. We never had a great relationship, she was a cold, demanding perfectionist while I was growing up. She never once told me she loved me. Having her here has fractured any shred of relationship we may have had when we were living way far away and only visiting periodically. I regret ever having taken her in, and now I feel trapped. I cry at the least little thing, and I've never been a cryer. I just want to send her back to NY and put her in a nursing home but I know that she would decline so much faster, and I know I would feel it was all my fault. We have chaplain visits and she tells me I will be glad for this someday, but I'm really wondering about that. I've yet to find very much to be glad about. We did respite care for a week and I was refreshed for oh, about two days, then back to the same old grind. I'm mostly all alone, as we live in the boonies and my husband works away for 3 weeks straight and is home for only 10 days. Those 21 days go on and on and on....Oh and those 2 days "off" when the ladies are here? One of them is running errands, groceries, etc. I got a chuckle out of a long-ago post about recognizing the caregivers at Walmart - don't remember who said it but you would recognize me!

Sorry I'm so whiney and negative but I really needed to get this off my chest. Not that it changes anything.... Thanks for listening.

OK, so mom and I had a big argument over her stuff. We are putting our house on the market. In NJ houses are selling, however not at the rate of 4 years ago! We are moving to a 55 and over community. We have to stage. It is what I do so I know what I am doing. Mom wants me to have her go through every single box and unwrap every little knick knack! Not doing it. She has no idea what it takes to move and down size! We did everything for her and she is clueless! It is going to take 2 months just to purge, pack and stage. All of her things are going into storage so that our basement looks roomy and the potential buyers can picture the potential. That does not even deal with the packing and moving. God grant me strength!!!!!!!

It's a daily struggle to stay on top on our own pain while we help them cope with theirs. You are all doing a wonderful job.
Carol

I completely understand your pain. My mother has lived with us 3 years this november. Everyday there is a sad point. But I do try and pick up on the good time.
Just last month mom did not know who I was. Still today she has her moments.

I cry every day too facing a parent who is not the same person she was years ago. She is 88 and can function on her own but my heart aches when I look at her and see that she is declining. I cry and pray for strength every day.

Hello everyone I feel like I accomplished something today and mom and I had a good day first time in awhile. I was up most of the night doing research on the financial problems and found a company with the BBB and worked out a plan with them on paying my mom's credit cards. This has knocked the payment almost in half. I took mom to the doctor and she is doing good so we went eat lunch after we have not been able to do that in a long time. The only major thing I need to get taken care of is turning her car in. We decided she don't need it she is not able to drive anymore and that would save another 600 a month. She agreed finally. Maybe things are starting to look up for us. Can't wait till next weekend I have to go pick up my lil daughter in Louisiana so I will have 2 days by myself. can't wait but, then I think I will be a little lonely nah I will suffer through it. Thank you everyone I am so glad I found this site it is a lifesaver.