About 8 months ago my 87 yr old grandma suffered a broken femur due to a fall. After surgery she was put in a rehab center for 6 months. We were told to make some type of arrangements before the 6 months passed. She had such limited mobility and no further improvement in therapy so they said she could not stay longer. They said she either needed to be put in a nursing home or go home with 24 hour care. Grandma said no way to the nursing home and i dont blame her. Since gramdma still has somewhat decent amount in savings, medicare would not cover any kind of 24/7 services. My family and i had decision to make. We looked at prices of caregivers and there would be no way she could afford them. Shed maybe make it 6 months and then be forced to give her house up to a nursing home. She doesnt want that. I decided to step up. I am 30 with no children or other major responsibilities. So she gets released little over 2 months ago. Comes home and i move in to her house so i am there 24/7. Grandma is hard to get along with and can be mean but i still want to do everything i can. She needs help toileting, washing, changing, meals prepared and brought to her. Medicare covered for home visits twice a week physical therapy,occupational therapy and a nurse for 9 weeks so far. The physical therapist would give grandma "homework". She wanted her to get up and walk several times a day. Which is fine but she needs me to assist with a gait belt. Everytime i urged my grandma to walk she would get angry with me and say "ill do it later!" I was only able to get her to do it about twice a day after plenty of arguing. I told this to the physical therapist and she was mad. My grandma then blamed me saying when she wants to walk, i am downstairs. I do stay downstairs in downtime only because her television is so loud. And asking to turn it down is a whole other argument! I tell her if she wants or needs anything while im downstairs she can call my phone and she DOES. She calls if she wants me to put a blanket on her, if she wants lights turned up or down, if she needs to pee, anything and everything she's asked. But never ever has she called and said she needed help with walking therapy and when i suggested it she declined with anger. So she tells this girl that shes alone and i stay downstairs and wont help. I did admit that i do go down there for peace becsuse of the blaring tv and to catch up on some lost sleep since grandma doesnt go to bed til 11 pm and wakes at 4am for bathroom, insulin, and even wants breakfast at that time! So some nights are really hard if im not able to fall right asleep. Which a lot of times im not. Im up with anxiety and worry from this situation. The PT tells my grandma that if i am away from her and cant help her walk and cant do what she needs, then maybe she should get a new 24 hour caregiver! I said how? And do you have any phone #s of these agencies then? She said she will have the home nurse give me info. So the following week the home nurse confronts me asking if im quitting and why do i want the #s. I said "no i was just frustrated and a bit offended that the PT would give such an opinion when she is only in the house with grandma 30 mins at most" i told the nurse how i try to catch up on some sleep and that whenever grandma needs me she can call me. I said i am feeling sick from lack of sleep and if i get sick who will care for her?The nurse tells me "ha! No one gets sleep nowadays! Youre not even that old. You cant be very sickly. You seem more concerned with your wants/needs than hers. A true caregiver would be sitting next to her the entire day!" I told her ive tried that but the tv is too loud that it hurts. And im only downstairs til about 9 am then after that im in the next room from her. And also that grandma eats by my preparing and bringing food right to her about 4 times before i even think of eating once in the day! This nurse says she wants her care extended another 6-9 weeks eventhough all other therapy has not been extended. And on top of this criticism i thought before this incident that this nurse had been rather lazy and her visits were turning into gossip and tea time. But never would i have said or accused her of that! She gets up to leave and says "ill go ahead and extend my service. Ill see you beginning of next week. Oh honey! I hope you dont think youre being judged!" I totally know i am. So just wondering should i let anyone from her agency know of this? Or would that open up new doors of accusation? It is going to be reall uncomfortable now to see her knowing she thinks this of me.
If you call the agency and request a new nurse ask them what the nurse is specifically expected to do.
If some one suggests a new caregiver ask them sweetly to arrange that and some one to pay for the services. How are you managing to live by the way if you can't go to work?
It is so frustrating when you get uncalled for accusations.
Re: the therapist, if she thinks most of her patients are doing half of what she asks them, she is out of her mind. She is working with a tired, stubborn population and she should assume that what they do during her visits is all the physical therapy they get. (Not that you shouldn't keep pushing your grandma -- that is great. But your grandma is a "free agent" and neither you nor the therapist can make her do anything.)
You are 30 years old, and should be working at your own career, living life as a young person should. Why is everyone okay with your being the 24/7 caregiver? How long is this expected to continue for you?
Get a written caregivers agreement and get paid and when the money is gone, sell the house and let Medicaid and provide 24/7 care.
You say that Grandma doesn't want to sell the house and go into a nursing home but at the first opportunity she has, she throws you under the bus. I could not stay loyal to that. If Grandma wants you to give up your life and care for her, she needs to appreciate what you are doing.
You gave up your life for your grandmother, if she's doesn't want to do what she's supposed to then she's needs to go into an AL. Period.
Nicole
It might be worth it to think about what Mom2mom said just to protect you and your grandma in case she does need to apply for Medicaid for long term care. There are books on caregiving that might have advice on on that. But many families are in the same boat: loved one has "too much" for social services but not enough for around the clock care. We did similar to what you are doing; there is no way my grandparents could have afforded to pay us.
It sounds like you and your mom are taking really good care of your grandma. If you need a little more in the short term, sometimes the county will offer a few hours a week of visiting aides who can help bathe, feed, or do light housekeeping for your grandma. The income limits are not as stringent as for Medicaid; it is through the county's Dept. of Aging. Your grandma may qualify (even with live-in help.)
I'd check on ways to monitor grandmother from downstairs. How would she get out in case of fire or emergency if you are downstairs? Does she have cognitive decline? What if she can't use the phone to get in touch with you? This lady (therapist or nurse) may have had the wrong approach, but, I'd consider her concerns for safety reasons that could effect your grandmother.
But your mother is still accepting that you are the free 24/7 caregiver, which just isn't fair to you AT ALL. It's as your mother is more concerned that HER mother's wish to not be in a facility takes precedence over you, her own daughter.
It's quite possible that you can get her care paid for through a government program. You mentioned medicare but it's medicaid that pays for long term care, not medicare. As for her having too many assets to qualify for medicaid, there are a variety of ways to spend down those assets until you meet the medicaid requirements. So go talk to a lawyer. It may cost a few hundred dollars, but it can save your grandmother 10's-100's of thousands depending on how long she needs long term care.
With a nursing home, Grandmother would be cared for by many people... doctor, nurse, aides, housekeeping, chef, waitstaff, maintenance, etc. and they all get to go home after their shift, and return the next day all refreshed. Abbey, you are doing the work of all these people, and these people get paid, plus benefits.
Abbey, my Mom lived to be 98, could you picture yourself taking care of Grandmother for another 5 to 10 years? And then next caregiving for your Mom? Sadly 40% of caregivers die leaving behind the love one they were caring, as this mission is extremely physically and emotionally exhausting. Other relatives expect waaaaay too much of one person.
Time for you and your Mom to sit down and map out the future. Medicaid will pay for Grandmother's care, but only if she is moved to a nursing home which is more cost effective for Medicaid then sending out caregivers to the house. Plus Grandmother would get immediate attention if there was a health issue.
As for the nurse/aide not coming into the room because the patient needed to go to the bathroom... one needs to realize that the nurse/aides could have been tending to several emergencies.