Rachel M Posted January 13, 2009 Share Posted January 13, 2009 Long story short: My mother (late 50s) had a category 4 SAH last June. She was hospitalized for four months; during this time, she was mostly unconscious and her medical said it was highly unlikely that she'd ever 'wake up'. But then she did, and since October, has been fully conscious, with her memory and awareness greatly improving. On the PT side however, my mother has been difficult and uncooperative and often wishes to skip her sessions. Her PTs have to coax and cajole her until she finally participates. Additionally, she is not interested in OT, though is totally capable of dressing herself and brushing her hair/teeth. She can feed herself but typically has no appetite and doesn't eat much. Her team (she's in a skilled nursing facility) has decided to stop coddling her and gave up on OT. They also have stopped giving her tube feedings, as a means of encouraging her to eat more orally. Behaviorally, she is snide, rude, somewhat obnoxious, completely self-centered, and too quick to drown in a pity party. She says things to her medical team and to family members of her roommate which are completely inappropriate (e.g. 'f**k you' 'get lost'). She continuously whines that 'nobody' visits her (totally untrue -- she has many friends, most of whom take the time to write in her bedside 'journal' so that she has a record of their visits) and is wholly dependent on me as a means of staunching her loneliness. I try to be sympathetic but to be honest, I am at the end of my patience with her reluctance to take responsibility for her own recovery and for filtering her behavior. I am not able (or wiling) to visit her everyday and when I don't, she calls me up, whiny and needy, and I wind up feel guilty for thinking 'go away!' My brother lives in another state and calls her a few times a week; during these calls, she rambles sometimes, engages in sensible conversation other times. Almost always, she forgets that he's called in the first place. When I bring her food to eat (she complains of hating hospital chow) she takes two bites and pushes it away, even when it's something I've made myself. The worst thing is my lack of patience and short temper. When my mother starts in with her pity parties, her whining, her neediness, I completely lose it. Part of this stems from years and years of bad blood and from my feeling that she was not a good mother to me when I was a child, something that still affects me now, in my late 30s. It nonetheless is a terrible feeling to know you're making your own mother cry, especially in this trying trying time. Though I spent all of my summer working to bring my mother back to consciousness, and felt hugely relieved when she came back, seven months on, I am burned-out, bored, resentful, and angry, not to mention the enormous sense of being taken advantage of by my brother, who has not altered his life one iota (I left an overseas job I LOVED, and have gone through my savings as I haven't been able to find a job since last June). My mother's SNF benefits end in two weeks and she has been rejected by acute rehab, who think she is 'too advanced' for them (!!! -- she can't even walk yet!). Barring divine intervention (e.g. I win the Lottery), she will be back home by January 30th and I will be saddled with her care, a role I wholeheartedly do not want. We can hire day care and I can get out of the house, but what happens at night? I worry that my bad attitude will even further hinder her motivation. I'm not really sure why I wrote this...guess I just needed to vent! Thanks for reading this. Link to comment Share on other sites More sharing options...
stessie Posted January 13, 2009 Share Posted January 13, 2009 Rachel It is fine to vent. You have been through a great deal since last summer and your life as well as that of your mom has changed dramatically. I am sure you will hear from other caregivers who can relate to some or all of what you are experiencing. My wish to you for 2009 is that you stay healthy. Keep on posting, too. Stessie Link to comment Share on other sites More sharing options...
kanderson Posted January 13, 2009 Share Posted January 13, 2009 hi rachel, i am very sorry you are having to deal with your mom's behavior right now. i think maybe it is from the damage from the stroke. perhaps you need to have her seen by a neuropsychologist for evaluation and testing. if she continues like this you both will get nowhere if u are caring for her. she is so wrong in not wanting to do her therapy she will regret it later on. she might be expecting her kids to care for her instead of working on her rehab herself. your brother needs to be involved as well instead of pushing it off on you. you can rant anytime you want to, thats why we are here. i;m sure other caregivers will give you some suggestions. you are a good daughter for what you have doing for your mom. she is acting very selfish towards you. i hope you can find some answers to help you. i wish you better days ahead, so hang in there. try talking to her doctor to see what he has to offer you too. Link to comment Share on other sites More sharing options...
dstraugh Posted January 13, 2009 Share Posted January 13, 2009 Hi Rachel, I am so sorry for you and your Mom are experiencing. I agree with Kimmie in that your Mom's issues could be related to the stroke damage. A neuropsychologist may be able to assist your Mom. If you are going to be caring for your Mom, you are going to need to get her help to improve her attitudes. Physical therapy is vital to continue for her continued recovery. My thoughts and prayers are with you and your Mom. Link to comment Share on other sites More sharing options...
Guest Pjoy Posted January 13, 2009 Share Posted January 13, 2009 Dear Rachel, I am so sorry for what youe are going through with your mom. You have every right to blow off some stems.Is your Mom,s injury frontal? if so meds are the only alternative to her bad behavior. A neurophycologist could be of great help. If her infury is not frontal , I would talk to her and tell her you have done all you can to help in her recovery and she is goinig to have to help herself.It may sound harsh but may be necessary. Good luck and God Bless you.............Joy Link to comment Share on other sites More sharing options...
fking Posted January 13, 2009 Share Posted January 13, 2009 Rachel, I was thing you were the Rachel with the daughter who had a stroke? I think we have to understand she has been through so much for four months. I know that time frame, that's how long I spent in the hospital and rehab after my stroke. You gotta figure, right now her "mind is out of it", she feels good just being alive not knowing she needs the PT and OT to get better. Try to put yourself in bigger shoes where you can feel where she is in this recovery process then your Patience's and short temper should ease up a little. My wife has no Patience's either and it makes me not tell her things I would love to discuss with her. Her understandings are very bad. You know you hear some say they would rather be dead than surviving a stroke in their condition. It's mind over matter, for me I'd rather be living but for a few others it may be differently. The mind is a terrible thing to lose, so having a stroke we lost half our brain and mind functions on one side. WE HAVE TO UNDERSTAND THAT FACT. I'm glad you are able to vent and talk with us and express yourself, it helps everybody. You can not but if you could put yourself in her place for one day as the survivor, you would feel the other side of the coin. In my case I feel I'm the care giver and the survivor and that's what keeps me motivated to survive no matter what. Just think how much more happier she would be if she was walking, bathing, and feeding herself. Let alone driving and getting about like many of us are able to do. Even for me it took a while, it wasn't easy. When a person is "down" it's not easy to feel good about your condition. My heart goes out to you as her care giver, that's a big, big job and to her as a survivor from all she has faced in her recovery process thus far. Okay, I'm finished ranting! :Rant-Off: Link to comment Share on other sites More sharing options...
arogers Posted January 13, 2009 Share Posted January 13, 2009 Dear Rachel, I know your frustration. It isn't easy to stand by when one is pushing on the "control" button. I know so many caregivers who experience your frustration and guilt. My husband is good with the control button too. My friend who cares for him when I'm gone has seen it. I think you know this, from your post. I know it hurts when you are made to feel as though you haven't done enough. However, you have. First, please take the practical route. If you haven't already, look for the Senior Services organization in your area. Normally these agencies serve the county. You may have to do some research, but I think you should be successful. This agency will help you tremendously look at all the alternatives for your mom's care. The other thing is that they may have a Caregiver's Support Group. If so, run, don't walk to the next meeting. You will really see you are not alone and there are solutions to your dilemma. When my dad was dying I would call my brothers asking for advice and their standard reply was, "you're doing a good job Sis, whatever you think..." It was so frustrating. Things didn't change when Dad passed away and we moved Mom to our town to care for her. Nobody can do for the stroke survivor what they will not do for themselves. That is the bottom line. Your mom is probably dealing with some dementia since she can't remember the reason for calls, etc. Her behaviors sound like it, but I'm no doctor and I sure can't diagnose! The lack of appetite following stroke isn't unusual I don't think. My husband said nothing tasted good for about a year. Now, four years out everything seems to taste great - too good for a diabetic!!! The sad reality is that unless there is a medical need, Medicare will not cover SNF for psychiatric needs. Medicaid will though and I think that is just wrong. Is there any way your mom could qualify for Medicaid? Was your dad in the military? If he was, there may be help through the Veterans Administration. So, the practical steps for you are to find out who to talk with at the Senior Services organization in your area, find out if there is a way she could qualify for Medicaid and to contact the VA if that is a possibility. The other thing you need to do is to contact your county Social Services. They have social workers who can also help you and advise you. Warmly, Ann Rogers Link to comment Share on other sites More sharing options...
mekelly Posted January 13, 2009 Share Posted January 13, 2009 Rachel, You know your Mom and we don't. If this is not her personality and is probably the result of the stroke, I agree with all of the other posts- get her to a neurospych and see if medication can help. You may also want to talk to someone about medication for you. Irritation is sometimes a sign of depression and you have every reason to be depressed. You may also want to talk about some of the issues that this has brough up with respect to how your mom dealt with you when you were a kid so that it does not impact how yu take care of her. If this is her personality, though-- and is pretty much how she hadnled things pre-stroke, then I think it is time for some tough love. You are not obligated to take her home and take care of her if she is not willing to help. You need to be empathetic to the terrible things that she is going through but you do not need to let her be abusive to you (if it is not a side effect of the stroke or meds, of course). You should figure out what lines in the samd you are not willing to cross. For example, are you willing to take her home if she won't do therapy? You can't bluff though. With my Mom I want her to do the therapy but I know it will be her decision so I just tell her the results if she won't-- she decides. It also sounds like yu need to find a way to avoid the hot button issues that set you off. You should talk to her about ways to handle them that work for you both. For example if it is the complaining that makes you not want to visit, you can tell her that. You do need to let her vent so you could agree that during the first 10-15 minutes of a visit she can cry and complaint as much as she wants and you will commiserate with her ( after all what she is going through is horrible). Dugint that time let her vent- don't get mad at her or tell her mhow much worse it could be..... After that you need her to try not to complain and agree that if she cannot stop you will leave. Having very little appetite and getting tired of eating after a few bites is pretty normal. If it frustrtes you to cook for her knowing that- maybe you could bring in food that is better than hospital food but not as much work. When my Mom was in the SNF I often brought in pot pies or rotisserie chicken because she ate so little that I hated to cook. Since it only took a little efforts I was less upset if she wasn't interested. Now that she is home, I try to cook things that I like so even if she does not eat- I do. I also try to make things that she can have as left overs so even if she only has a few bites for dinner today- she may have it for lunch tomorrow. I am sorry things are so tough. I hope it gets better. Link to comment Share on other sites More sharing options...
myhome Posted January 13, 2009 Share Posted January 13, 2009 Hi Rachel welcome to Strokenet, You've gotten alot of good advice so far, especially Anns advice to look up the Senior Services organization in your area. The behavior things can be atributed to the stroke without a doubt, and the quickness to start a pity party in your presence seems like she may be trying to manipulate you into feeling guilty. You can't make your Mother do her rehab if she doesn't want to, that's something she'll regret alot later on. It's also sad that the PT's have given up so soon and cancelled her OT, if your Mom only knew that the saying "if you don't use it you'll loose it" is actually very true. I know that this will sound alittle harsh but, your brother is lazy and insensitive to your need for help with your Mother, his non involvement in your Mothers care should not be tolerated further. I wish you well, hang in there, it will work itself out. Keep us posted. Link to comment Share on other sites More sharing options...
Rachel M Posted January 14, 2009 Author Share Posted January 14, 2009 Thanks, everyone, for your wonderful advice and kind thoughts! I sincerely appreciate it. To answer your questions, yes, my mother was whiny and difficult before her aneurysm. She has always had the 'poor me' mentality and seen her glass as half-empty, while the rest of the world has a cup runneth over. I am a huge fan of tough love and have tried this with her many times. Unfortunately, she does not respond at all and only gets upset and slides further into her pity party. I have asked her doctor about neuropsych and hope this will come about sooner rather than later. We've talked about anti-depressants but mother says 'no way!' -- she is against all but life-saving drugs and doesn't see how an anti-depressant can truly help her at this time. Whenever I express my frustrations to my brother, he simply replies, 'visit less often'. He offers no help whatsoever, even though he is not married, does not have children, and has a very well-paying job. I really do not wish to be anyone's caregiver, let alone some whiner who can't be bothered to help herself and who treats everyone around her like servants and thinks the world revolves around her. Mother won't go to a board-and-care and my brother of course doesn't want her living him. My uncle has expressed taking her somewhat, but when pressed, always backs out. What to do? Mother doesn't qualify for Medicare or Medical (too young --59-- and too much money in the bank). She can afford home care -- for a while, but what good will it do to bring her home if she has such a bad attitude and refuses to try to be an active part in her recovery. Thanks, again, for reading this. :hug: Link to comment Share on other sites More sharing options...
fking Posted January 14, 2009 Share Posted January 14, 2009 Rachel, Trying to get an appointment with those physics and neuro doctors may be the best bet. I think she's like me, suffer from post tramatic stress disorder (PTSD) to some degree of what she has been through. I have a lady come in three days a week to help me with whatever I need in the home. That's real good for me. Your mom may benefit from something like that. Mine is paid by the VA. I could not afford it. Hope something works out soon before you loose it caring for her, but I know that's your mom what else can we do in these cases? Link to comment Share on other sites More sharing options...
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