Aunty is coming home from NH rehab in 2 days!! How do I deal with this upcoming stress?

Ilovemom2. ...perhaps I didn't explain clearly. It's not a picnic. It is my church's Annual Women's Day Dedication Ceremony, a much more sophisticated, "suit-and-tie dressy formal event where we honor the Mothers of the church and award those who volunteered their services this year. Just wanted to put that out. That's partly why I was so disappointed. I was supposed to be a major participant.

I apologize to those of you who may have thought that I was being inconsiderate or petty and having messed-up priorities. I guess my last post was more of a rant than anything else.Please chalk it up to simple frustration with the whole mess.I will go back and reread everyone's advice and take it seriously under consideration.

Gospel Girl,

It is not unChristian to be disappointed that you cannot honor a commitment or participate in something important to you. It is human, and it is normal. But the real question here is whether you really should not go and really should give up everything that matters to you. We all are called to make some sacrifices in life but NOT WITHOUT LIMIT and not when the sacrifice you are making is not really reasonable or necessary and does not result in greater good for someone.

A long time ago, but I still have a painful memory of it - there was a wife whose husband became quadriplegic in an accident. Well, long painful story made short - she explained that everybody expected her to give up every activity she was involved in to take care of husband and do nothing else with her life. And, that was too much to give up. We said, why not do ____ and ____ which were her "things" she just lived for, and hubby could be independent enough for short periods and others could have helped with care....but the very fear of that withering judgement of family and friends destroyed that marriage. It was so all or nothing to her that she ended up initiating a divorce and saying she could not do it AT ALL. The husband then was left to cope with not just his disability but the loss of the love of his life...and to top that off there were children involved.

Why do I tell you that? Because, you should not volunteer to have your life consumed, and you should not expect that because she is your family member you must do just that or be unacceptable. EVERY CAREGIVER should have respite. And appreciation. And a chance to put their own oxygen mask on first. Clearly, every caregiver doesn't, or AgingCare would not be so necessary. If you choose to be a caregiver, don't choose to be one without those very basic necessities of caregiving, which are far, far, more important than what others think or even assuaging the false guilt and obligation and false sense of indispensibility in your own mind. Do what you CAN reasonably do for your loved one, not what you CAN'T without burning out and hating your own life. And even more - if you take on the whole caregiving thing and fail to take care of your own mental and physical health, you could die in the process - some people do, you know - leaving your aunt not one shred better off than if you had done nothing at all to help her.

Well said. Go on ur outing. Like I said, tell granddaughter she needs to find someone to be with ur Aunt. You have obligated yourself. You will need to be clear on what u r willing to do and what u aren't. That u need time for yourself.

Every situation is different. Just because someone had a difficult or horrible experience taking care of someone doesn't mean everyone else will. Seek help. I took leave from my job when my mother, who suffers from dementia, could no longer be left alone. I had no other option at the time. Quickly though I applied for home health care through DHHR. I was put on a waiting list. 6 months later funds became available and now I have a home health care professional who takes care of my mother while I'm at work.
It was a struggle at times but overall it was a rewarding experience. I'm proud that I stepped up and provided care and safety for my mother in her desperate time of need. I grew so much closer to her during those months. Sure I had to put my own professional life on hold for awhile but this is my mother. So it was my turn to be there for her in her time of need. I knew it wouldn't be a permanent situation. I knew I'd be able to go back to work eventually. I moved her in with me and I continue to provide her care when I'm not at work. And she'll stay with me until we need end of life hospice care. I've had to make sacrifices because she lives with me. Plenty of them. It would be no different if I had a new baby. Your life changes. You work with it.
Seek help from DHHR. If you're disability doesn't allow you mobility you might not be able to care for your aunt, not even for a short period of time. Don't do it out of guilt. You're not obligated to take on the role of caregiver if you don't have the capability. You know your particular situation. But make sure you get counseling.
I wish you all the best!

I'm a caregiver for my mother and father...I adore my mother, who is in her last stages of dementia....I have no life...I live to care for them, and will have to do this until they die. Wow...I can't imagine giving up my life for anyone else in the family...I have no children. As almost everyone has posted....don't do it!

I'm very sorry to hear about Aunty and for the anguish many replying to you feel. There is so much we don't know about your situation, and I we should not be telling you what to do based on our situations vs. yours. One of the things that kept me going to care for my parents was personally experiencing what many rehabs are like and knowing that many people recover more at home but make slow progress or worsen in facilities where PT is limited, the environment is loud, and patients are restricted from trying to do anything themselves. Further, I know people with disabilities who are excellent, capable caregivers. It depends on your your situation. Your question was how to deal with the stress. First is to breathe. Breathe again. Assess your strengths and how long she might need what kind of care for and how her rehab will continue (in home, outpatient). Have that conversation with the Discharge Planner. Assuming the goal is for her to walk again safely. Planning, gathering resources, having confidence, and having empathy will help you immensely. My parents took care of my grandparents when I was an adolescent, and much of it fell to me. They weren't very nice and even less with dementia; it was hard. But it was how my Mom was raised, the right thing to do all around, and there weren't many options financially. Taking care of my parents was also hard, but they had always put us kids first, and were so scared to become so disabled at a young age. Caregiving is noble work, whether you're paid or not. You can make a huge difference in someone's life. You might be surprised how many people from your church help. But talk to your family. Really talk with them. They might not be expecting you to do it all or realize you're so stressed and may be able to relieve some of it. Thinking about the good parts and how you'd want to be loved/cared for in your recovery instead of focusing on the bad parts (your mindset) can do a lot to relieve stress too. Then breathe again.

Ok I am in the same boat, though not looking after an aunt. We did, however, try to look after my aunt when she was in the nursing home.
We ran into a situation where her family, who lived many miles away, did not give us any financial help to buy her things she needed, and any request were meant with disbelief and procrastinating. It was very disgusting because I felt that they had family problems and we were caught in the middle.
So first of all, you need everything in writing as to which person(s) will be giving financial aid for looking after her - and paying you, for sure - and who will be responsible for medical decisions, and legal problems that will pop up.
Don't get stuck with responsibility but no power.
You WILL need help. I am planning to pay someone to help me because it is absolutely trashing my health. I just got told off by one of my doctors on Thursday about putting everyone ahead of myself.
Get care workers to come in, get respite, sign her up for Hospice ( you don't have to be dying, just have chronic illnesses ) and get a geriatric social worker to pay a visit.
Bottom line is: If THEY will not give YOU the POA, then walk away and let her family deal with it!
My aunt's granddaughter had POA and she was a real jerk to deal with.

I lost my mom's caregiver this year, and he was my beloved brother. He got worse day by day, he got picked on, they blamed him for everything, He lived with her for nearly twenty years so we expected him to do whatever, without asking him if he could handle it? Other people made the schedules he should live by... what they should eat, when they should eat it, where they will eat it, and who she would eat with, and that was before breakfast. I think the caregiver's are the most incredible human beings, one third of them die before the person they are taking care of die. Bless the caregivers who care for our parents this Mother's Day. They have the most thankless job, but they are our backbone to decently!

Hey GospelGirl - This is a very thorny issue and enters into legal terrain. You mentioned that Aunty's granddaughter has POA? Do you know anything about Medicare benefits and copays after the 21 - 100 day intervals? Is this why your granddaughter wanted Aunty released? How did you get sanctioned with the responsibility of caring for Aunty while the granddaughter has the authority for making decisions on how you will carry out those duties under the POA? Is this a Medical POA or a Financial POA? Will you be compensated for your duties from the estate? You didn't mention if Aunty has any other medical conditions that need to be monitored and/or medications that need to be administered and coordinated. You didn't indicate the extent of your disability, but I was disabled too and can tell you; you are headed for a nervous breakdown. Aunty will need a 'toilet riser' as a minimum - a bedside commode would be better and staying at the granddaughter's place (she's younger than you?) would be optimum. Aunty's hip will heal and hopefully she made good recoveries from the stroke(s). This is just the beginning of an even longer and more stressful journey. What you do now will set the stage for the next few years of your life. I hate to sound callous, but you need to do some very careful planning that may even entail seeing an attorney. If you plan on going ahead with this :/ ask Aunty's doctor for Home Health Aide, DME & Physical Therapy 'orders' so at least you can get some assistance under her Medicare benefits. Even then - you are going to have to be available to schedule and coordinate all these 'benefits' while you grocery shop, prepare and serve the meals, clean house, yard work... remember - the rest of the world will not stop for Aunty; only you.

Gospgrl, so what did you decide to do? Auntie was to be released two days ago now.

And another thought that just occurred to me her insurance may not pay for her rehab stay if she leaves against medical advice.

Happy Mother's Day. To those who have passed let us remember the love. To those who are caring, I hope someone will care for you today. Know that you are all in my heart. Hugs!

Gospelgirl - I'm new to this forum & just saw your disability details in your earlier post. Please rethink what you are about to undertake. It's not safe for either of you. You haven't even really started this undertaking and you're already talking about cancelling doctor's appts.? If someone can't stay with her while you do something as simple as keep a doctor's appt - you have no support system going into this. POA needs to be transferred to you or 'granddaughter' needs to step up with a 'compensation contract' whereby you are financially compensated for the care you will be providing 'aunty'.

Won't pay if against Dr.orders....I was going to say something like that but wasn't sure if it was still true. Need to check that out.

Well, I think tomorrow is your big changing day. Do not worry, you are educated now and you know what is best for you and your aunt! We are not here to judge you, only support you. Bless your heart no matter what you decide. Bless the hearts of the people who helped you be educated. Bless Auntie's heart too, we all love and care about our elders, or this special group would not be here for you. We love feedback, please let us know how it goes... Go Go GospelGirl!!!!

Update:.Auntie is back home now, but my cousin (POA) has brought up the assisted living topic, and Auntie has at least agreed to think about it. She was so upset and anxious to get out of the NH as soon as possible. It's only been a few days, and the only problem I had was on Sunday when I went to church and it ran over a bit longer than usual because of some Mother's Day festivities we had. I
called to check on her and she asked me to come home becauseshe didn't want to be by herself. I had to call a ride(I normally ride with another member , who wasn't ready to leave yet).Auntie was upset when I tried to explain it. Now I am trying to figure out how to work out this week's issue: a major Women's Day program that has both morning and evening (10:00 and 3:00 services). This is our traditional event. I am going to ask her how she would like me to handle it.

Do not give her an option. Tell POA that you need an agency caregiver or she could come an stay with your aunt while you go to the program. Auntie will not be cooperative, most likely.

Thanks, gladimhere. ..POA's son (the 11-year-old that I spoke of in another post) may possibly be able to spend the weekend with us.He is very mature and has been identified as intellectually gifted.Should I trust him to watch her while I'm gone? He really thinks that he can handle the job for a few hours.

Eleven is pretty young to be handed such a responsibility, even if he is gifted. If she still is mentally competent then she would be in charge, and all he would need to do is keep her company, right?

If your Auntie can afford it, some assisted livings are wonderful, and you should start checking them out! My mother's facility was beautiful. She ate in a fancy dining room and ordered off a menu or could have room service. They had a coffee bar in the morning that turned into a happy hour bar around 4:00 and had live entertainment daily with appetizers before dinner. She had a living room, bedroom, kitchenette and bathroom, daily housecleaning, laundry and she had her own furnishings. She had floor to ceiling windows and looked out at two sidewalk cafe bakeries. My mom went from laying around all day to sitting up and caring about the way she looks again. The support I received from the nurses, doctors and staff was incredible. Best thing to ever happen during the time of crisis for me! It takes research and planning though. They are professionals trained to care for people like your aunt and my mom. Good luck!!! Thanks for the update!

gospelgirl223...don't run home because she doesn't want to be alone...sounds like she's mentally competent...you are enabling her to control your life. yes, let anyone sit with her if she wants company...or you will be losing your life!! please keep posting...

Gospl, I think 11 is a bit young for the responsibility. Does your aunt know who he is all of the time? It may be a good solution but would probably have someone with him the first few times. How is he going to handle tasks as you?

I have left him with her before, but only for quick things like a trip to the store or short personal errands. Prior to the broken hip, he would stay with us after school or on weekends; in fact, she/we have been his babysitter since he was born.

(Oops. ..posted too fast). He watches his 16- month-old brother a lot for his parents,and that's what gave me the idea that he may be able to handle this job.I will see if his mom can stay with him if she doesn't have to work. I brought up the idea of an agency caregiver, but Aunty didn't like that too well.

I agree 11is too young for someone to help with care of the elderly. Especially a boy. Think he is too young to watch a 16 month old.

A broken hip in the elderly is very serious. She should have PT OT at home. If so, take adantage of the aide they should provide. At this point, what ur Aunt wants is mute. Its what u need to help her.

I am wondering where you live that anyone would think its OK to leave a 16 month old in the care of an 11 year old. The minimum age to babysit here is 12, and I personally think that is too young unless there are many fail safes in place. Children's Aid would not be happy with this...

cwillie has a good point. This is from a county website:
"Maryland Child Protective Services Procedures (SSA95-13) define an "unattended child" as: A child under eight left alone or in the care of a person who is not reliable or who is under 13.
A child aged eight through 12 left alone for longer than brief periods without support systems which should include phone numbers of parents, other family members or neighbors, information about personal safety, and what to do in an emergency. Children in this age group may not be left to care for children under the age of eight.
A child 12 or over who is left alone for long hours or overnight or with responsibilities beyond capabilities or where there is some special risk factor such as mental retardation or physical handicap that would indicate that the child may be in jeopardy."
In short, an eleven year old cannot babysit at all.

I brought my mother to live with me after my father passed and she was with me for a little over 9 years. We were never close but I love my mother and she was very upset over the care my father received in the nursing home before his passing and made me promise I woulnd't place her in a home. The worse promise I have ever made!!! She was healthy but had severe arthritis and was in chronic pain....she never did anything for herself...always depended on dad to tell her what to do and when to do it, so when she came to live with me I was the one to do it all and our roles reversed. I became the parent and she the child. As the years went on, I became bitter...I hated myself for feeling the way that I did, but I lost all of my independence. I lost all of my friends...they only ask so many times for you to join them and you have to decline because no one to watch mom...long story short, she was failing on a gradual incline for several years, but last year it became a different story. She started declining in a serious way. Her memory became nil and she became argumentative. I had to quit work in October to care for her. I moved mom 300 miles to my home and all of my siblings were where mom used to live so I was basically on my own. Never once in the 9 years did any of them (4) offer to give me a break so I could take a vacation or just get away for a week end or so. The first of this year it was terrible. I was on call with her 24/7 and getting maybe 2 hrs of sleep a night. She was bedridden by this time and I have back issues, a neck fusion with a titanium plate in my neck but she was falling and I had to lift her or call 911 more times than I care to remember. She was back in adult diapers and still had enough of her memory at times to feel ashamed of having me take care of this side of things. I was on the phone as much as possible trying to find agencies to help me....someone, anyone....I bought a baby monitor so I could be sure to hear her in the night time. I was killing myself. It was all about mom. That was ok....after all I made a promise to her, right? The last 3 wks I found some in home help and then she spent 6 days in the hospital and 6 days in an adult care home before passing. Please, re-think this if you are considering it. Line up agencies BEFORE you need them....line up help from family and friends, because you are going to need to get away, even if for only the day. I look back and know that my mom would have received better care from skillled nursing staff than I offered....I gave her the love they couldn't but I probably didn't do her any favors by trying to do this myself. I definitely hurt myself. I have aged 20 years and I am riddled with guilt...I should have done something different for her sake, but I didn't. My health is shot. I didn't eat, sleep, think right. I was exhausted in a way I have never experienced and I am quite sure I will never recover from this fully. I don't know how people do it if they are married. I see other friends who try to care for their aging parents and it can totally destroy the strongest of marriages. My only advice is to think it thru fully. I am glad I did this in one way but on the other hand I am sorry that I didn't do it differently. God Bless all of you who have to make this decision and bless each one of you who are selflessly helping your parents. I know the cost...ask yourself if you are willing to pay the price. Would I do it again, probably....but I would have agencies and help lined up in advance and this time I would make myself a priority.