(my plea for help starts in 3rd paragraph if you want to skip the background..)
My 75 year old mom was just coiled for a ruptured aneurysm on Mother's Day and is still in the hosptial recovering. She has experienced an inordinate amount of pain since the procedure which we are told is normal (seems inhumane to witness). They have given her everything up to but not including narcotics however, narcotics were offered to her last night.
I am her oldest daughter of 3 girls and the weight of her well-being often falls on my shoulders. I don't work outside the home however I have a family of my own. My two sisters both work.. one is married, no kids, and the other is not married. The mother-daughter relationship is very strained for me and my one sister. The other sister doesn't butt heads with mom like we do and also has a higher tolerance.
OK why I'm here... they want to release her in the next two days and we just don't think she is ready given her limited mobility resulting from her chronic and sometimes severely acute pain. She hasn't been walking or eating much so the doctor decided to come in last night and "tough-love" her into walking. She over did it and after they left she had some sort of seizure. The resident on call didn't think it was anything neuro but it sure looked that way to me and my husband. My concern is if she has this at home and no one is there she will get hurt or die from bumping her head.
Bottom line is that my sisters and I cannot be there 24/7 to care for her. This is for multiple reasons. Mom will become dependent on us and it will very likely slow her recovery. I have spent every day in the hospital and some of the nurses think that she does better when I'm not there. I am scared now and have a call into the Social Worker and the PA. I'm even at a point where if they say they are sending her home, I won't come pick her up. Please help!! Has anyone been through this with a parent??
Hi Sweetie...God Bless You and Mother...and your family...this is a tough journey...I am one of the "Survivors"... I have not been confronted with problem such as yours with my mom...however, I think you are doing the best thing...Talking to the Social worker at the Hospital...they will be able to give you all your options...and it may be your mom will be eligible for even home health care...Keep us posted...and I will keep you and your family in my prayers...
Hang in there...Cyber~thoughts and prayers...Colleen
Hi Sue, Reading your entry reminded me of my situation. I'm a survivor but close to your mom's age. I was in the hospital icu for a month, with always having a loved one by my side. When it was time to leave the hospital the social worker from the hospital told me I would either have to go to nursing home & then later have home health care. I didn't like that idea, & finally convinced them just to let me come home & have home healthcare. I was just onery enough & determined to make it work for me. The home healthcare nursing staff was great & made me work hard. I do depend on my daughter to get me to all my appts & it makes me feel bad that I can't do for myself as much. I am still in physical therapy & probable will be for quite some time. I feel so bad for your mom & you, but do talk to the social worker. They will help you as much as they can. Best of luck, will be thinking of you. Try to keep the faith.
Hi Aggie… It’s sounds like you had a tough road back… They told me my mom probably doesn’t qualify for home health or a nursing facility and if that’s what we decide it would be out of pocket… This hasn’t been confirmed as we are awaiting a return call/appt with the Social Worker. Did you have intense pain and for how long? It’s so hard for me to see my mom in so much pain… They just offered her Vicodin yesterday and according to the PA it seemed to help her. I just hope she won’t start having the undesired side-effects from it. They told her to take as needed and hopefully her pain will lessen on it’s own and she won’t need it as often. My mom and I have a very strained relationship and spending too much time together causes us to both loose patience with one another. … I think she will heal quicker if someone else is her primary care provider while my sisters and I fill in the gaps… Life sure can change in and instant… God bless you and your continued good recovery… Sue
Hi again,......I really feel bad for you, as I know exactly what you are going thru except on the other end. I can tell my daughter is getting tired of taking me everywhere & I can't wait til the therapist will let me drive, then I can do what I want. The pain I had was horrific from the time I had it all the while I was in the hospital. That I do remember! They had me on a cocktail of Vicodin & codene for at least 3 months. Then I finally started to wean myself off. I still take it if I have a headache I can't handle. I would bet your mom would probably do alot better if she had someone else help her. I know I wouldn't get along with my daughter. It is to close. I lose patience with her, as she has no clue what I'm going thru. Its not easy, Physically & mentally. I wouldn't worry to much about the drugs, cause she needs it right now. The docs know what they are doing. I still have the headache and its been 7 1/2 mos. Some days are better than others. Just be patient with her. She needs you at this time.
Thanks Aggie… It sounds like you do understand and it’s good for me to hear from “the other side”. The one thing I don’t want my mom to do is develop is an unhealthy dependence on me or my sisters, which we fear could happen based on things she says and knowing her expectations of us. We are willing to help but we need to keep our boundaries clear for everyone’s sake. Yesterday she told me three time that we need to take care of her and that now it’s our turn since she took care of us. I was mad…not because I’m unwilling to help her but because she just assumes it’s our job and doesn’t even consider asking if we can… This is complicated because another resentment I carry is that she wasn’t there for her mom in her final year of life. She had the opportunity as my grandmother’s health quickly declined to seek resolution but chose not to… I could never do that no matter what… I think it’s clear that my family is capital “D” dysfunctional which makes this all the more challenging but we move on… I just heard from the social worker and we have an appt tomorrow… if you pray we would appreciate one… Thanks Aggie… Sue
Under Medicare, I believe you have the right (providing you or one of your Sisters have Power of Attorney) to appeal the decision to release your Mother if you feel she is not ready to be released. We had to sign a form for my Mother-In-Law given to us by the hospital gave informed consent to prevent early release. If the hospital Social Worker is unhelpful, try calling a County area agency on aging (assuming you are in the United States of course). If your Mother in on Medicare and at her age she should be, she can be provided additional assistance at a neurological rehabilitation hospital to ensure she is capable of living on her own and can do so safely.
Sue, Been thinking of you & your mom, hoping things are going okay. You said that you had an appointment with the social worker yesterday. Hope that went good. Like Ed said your mom should be on Medicare & she should qualify for some kind of care. That's where the social worker would come into play. Please keep me posted on her recovery. Your in my prayers.
Thanks Aggie.. I love when someone prays for me! The meeting went well.. we got good information now we have to make a decision.. my sisters and I are meeting tonight to discuss the options.. prayer for that to go smoothly would be so very appreciated :)) You will be in my prayers too..
Thanks Ed for reminding me of that… I’m holding that card at the moment and if they push her out too fast I will play it… I actually told the social worker that I knew I had that right but I didn’t want to go that route if we could avoid it and asked for a little patience and time. So far so good. I don’t understand why the social workers don’t talk to the patient and family more than a day or two before the discharge day. I feel sorry for families who don’t know their rights and get caught up in the chaos of the system. Luckily I’ve had some experience with this dealing with my grandmother. Thanks so very much for the reminder and your suggestions!
Have been thinking of you & your family & hoping all is going okay for you.
Please keep in touch. Your in my thoughts & prayers.
Hi Aggie... Mom is home with 24/7 Home Health Aids... They are very expensive but needed to help take the burden off of me and my sisters. I am helping in other ways and have seen my mom daily... It's working out well so far.... I hope she will continue to improve so that we can taper back her paid care next week.. Thank you so very much for your continued care, concern and prayers. They are so much appreciated... I hope you are well also... Sue
Prayers to your mother and all of you for her recovery...
So hope appropriate testing was done, i.e. neuropsychology to determine your mother's abilities, memory, cognition, if aphasia, etc... also hope her balance was tested for P/T so she does not have falls/fractures...what therapies were given to her while hospitalized? Pray that her pain is diagnosed...The falls can be overwhelming from broken glasses to broken bones...
Again, prayers to you all; recovery is highly stressful for family/spouses a/w/a the patient.
Checked your update…saw that mom is home with Home Healthcare workers…hoping and praying all continues to work out…Colleen
Thanks Pat for your prayers… I haven’t been impressed with PT, both in and out of hospital. She sees her neuro on 6/13 but he was the one that over walked her resulting in a very strange episode where she “passed out”. I don’t know what happened to her because her eyes were wide open the entire time, she just glazed over and started to fall like a tree, but if my husband and I weren’t with her she would have hit the floor hard! This was in the hospital! As far as her back and leg pain, I have been suspect since it started that it was sciatica… they are entertaining the idea now… we will see.
Thank you Colleen… I am very grateful for every prayer uttered because our health care system is flawed and prayer is the only hope sometimes.
just reading your story and wanted to let you know you are all in my prayers...God will not forsake you in your time of need...praying for strength and healing for your mom....you and your sisters are doing a great job....take care n God bless
Thank you from the bottom of my heart, Michelle… So far so good… God is gracious and trustworthy.
I did the caretaker/advocate thing
for both my parents though for different reasons. The patient advocate and or social worker are good resources. The appealing medicare is also a possible option. The only issue is in the absence of a determination to the contrary Mom is assumed to be able to make her own decisions including agreeing to a discharge. My Dad, with diagnosed dementia, was discharged without my knowledge or consent. I was furious and he wound up back in but at a different hospital. If you have a health care proxy you could try and argue in her present condition Mom is not capable of making decisions. That can get messy in a lot of ways. I wish you the best. Make some noise. Hospitals don’t like that!
Thanks Thomas for sharing your experience and suggestions… mom is home and doing much better… but at some point i need to talk to her about her proxy. thanks again!