I'm am 18 years old and have been taking care of my 80 year old grandmother for about 2 months now. Her husband has been deceased for 14 years now. My grandmothers daughter (aka my mother), passed away in 2008 and her son (my "uncle") doesn't want to have anything to do with my grandmother or my family and is just waiting for her to die. My father and grandmother have never gotten along, so it isn't a choice for my dad to help me take charge. I am alone on my own with this situation I about about to speak about so any help is appreciated. Two years ago, my grandmother had a very bad leg infection that cause her to fall and had to be rushed to the ER. My father, my younger sister, and I have been left to take care of her dog on top of our own cat and dog, which wasn't a big ordeal for a few months. She was then transferred to a nursing home/rehab center for care while she got surgeries on her leg. She was then diagnosed with a cancerous brain tumor and had to go through tons of chemo. She beat the Cancer and the leg infection, and was then told she needed surgery for cataracts is her eyes (that hasn't happened yet). I did not know about any of these things, because my uncle did not keep my updated because he himself could careless about her and wasn't there to support her. After many calls and pleas for me to help her get out and back home, the nursing home finally was able to get her discharged and healthy enough after a year and a half. I drove her home, went grocery shopping, cleaned her house, cared for her until the home care nurses and aids were able to start visiting her a few times a week. She got weaker and weaker, was barely able to go to the bathroom alone, refused to eat food that she asked me to get for her, and couldn't make it to the phone in time when the aids called to let them know they were coming, so they didn't show up. Multiple times I let the home care know the door was unlocked and they were able to get in. She would always end up on the ground because she was too weak to walk, and I would always have to throw out my muscles trying to help her up (I don't want to admit it but I'm a frail, 110lb female and she weighs 175lb, and cannot lift her like that on my own). One fall last month I needed to call an ambulance, and they admitted her to the hospital. She was discharged and sent home and was fine, but things started to progressively get worse. She wasn't taking her medicine on her own, she wasn't washing herself, and refused help from the aids when the call but insisted I came over to do everything for her. I did when she needed it, but its honestly starting to wear me out a lot. Just this week, she fell again and called an ambulance, but apparently refused to go to the hospital when they came. I haven't heard from her all week, she usually calls me every day, so I decided to stop at her house. I found her on the floor, again, crying for me to help her up. I refused, propped her head up, and called an ambulance, and she was takes to the hospital. The house was a complete wreck, nothing like I had seen from her before, feces were covering the bathroom, and trails of it were on the floor from her crawling. She hasn't been taking her important medication, or antipsychotics. She is a threat to herself but refuses to go to a nursing home. She is not in the right state of mind, and says and does irrational things half of the time. I am afraid for her and her health. I don't want her to live the way she is living. It is also starting to kill me. I lost my job, I can't go back to college, I'm getting physically sick, I'm getting panic attacks, and I am developing extreme insomnia. I have issues of my own such as severe clinical depression and have been trying to battle it for 5 years and finally got to work with a psyciatrist last October. This situation is hindering my ability to get better mentally and is making me hurt mentally and physically. She is in the hospital right now and I believe this is the best chance for me to talk to someone there about this whole mess of a situation. I wish I would have never taken her out of the home. I cannot provide adequate care for her, and I feel bad about that. I want her to be well cared for 24hrs like she needs. I am basically her primary caregiver other than help from her aids/nurse/physical therapist that she sees a few times a week. I am alone, and have no advice from any one else. Any input would be highly appreciated. I'm just worried I wont be able to get her into a nursing home because she continuously screams about the "misery" at the last one and how she will never go back. That is the best option for her, she cannot care for herself even with the help of us, and she needs 24hr care. I need all of the help I can get.
Only thing I can think of is bringing a medical expert(s) and have him/her talk her into re-entering a NH; and/or making sure she gets 24/7 professional care in the comfort of her own home.
As far as the guilt, please read what I just wrote about AL. My mother is/has been absolutely adamant about not being in AL. When people are older they don't want to give up their independence or their homes or comfort zone. Physically and mentally Mom had to be somewhere safer, so we forced it. (but not until after 5 years of dealing with her needs and delaying for fear of feeling guilty and her not wanting to admit she needed help.) It appears at this point, she has made friends and adjusted (just as she did in independent living).
The money issue is tough, and you need expert advice to navigate the system depending on your grandmother's financial circumstances. Adult protective services should be able to help - keep after them, and don't accept no for an answer, try social services, and if all else fails - that is what your congressman or congresswoman is for. Yes - that is part of their responsibility - and their staff is trained to cut through the red tape for you (same goes for your state legislator) A Home for Mom is a good facility locator and they keep in touch well. You can get to them on line and they will phone your right back - its free.
Call your local area agency on aging and talk to them. I would also call the discharge folks at the hospital and tell them how grandma is being treated in rehab. If she ends up back in the hospital for the same condition, Medicare will not pay. It's in the interest of the hospital to get this sorted out.
A competent one would not suggest a person whose primary caregiver is 18 years old and can't stay full time with her, plus has already had multiple falls and is disoriented could go home without 24/7 supervision.
I don't think your chances of getting grandma to be reasonable and voluntarily agree not to try to go home again are all that good. She pretty obviously has dementia and/or delirium. There is not one single valid reason that she cannot have a mental status exam documented for her while in short-term subacute rehab and not one single valid reason that any physician would find her competent and able to return home on her own. If the social worker feels that making such a determination on her own is outside her scope of practice, so be it, but she could tell you where to turn and how to get there from here. Does she have a supervisor? Would the hospital SW potentially be of more help? Do you have a contact in Adult Protective Services or Medicaid office as suggested above?
So for the time being, treat your grandmother as though she were an innocent babe with no control over her own plans and save the discussion about her living needs for the professionals who are supposed to be taking care of her. If her social worker is being a wet rag, take it up with the staff at the hospital and get them to impress on the social worker that her client does not currently have the mental capacity to make decisions. Once that's established (it isn't necessarily permanent), the social worker can provide support and services for your grandmother without her consent, although she should continue to be consulted.
I am glad you are keeping your distance. You are doing a sterling job for your grandmother without getting walked all over. Brilliant stuff, well done.
I understand the frustration you must feel about the professionals not helping you. Three years ago I begged Mom's doctor to say she was not capable of living in Independent Living - she wouldn't do it, and wrote an Rx for Aricept (in 2 days Mom either took it all or threw it out - because it disappeared and she said she was finished with it) I had to beg to get her to diagnose her this fall, and then she threw out the Alzheimers without testing, just from a few questions she asked. The IL wouldn't renew her lease so we could finally move her to AL. She refuses help, shutting down about showers, a walker, etc so they leave her alone except for helping with hearing aids and making sure she gets 2 meals a day. She was writing paranoid little notes on every scrap of paper - and no one said a word about it. Between my sister and me, we have probably received 100 phone calls, half of which she says "I can't hear" and hangs up. Repeated calls to the AL, they say she is "fine", has a friend, goes to dinner, etc. They say they don't understand why we insisted on Mom getting an antidepressant. Hello - Mom has been depressed, paranoid and obsessive for years - then she started to get angry and a little physical. They think she is ok because they don't know her. As long as she doesn't wander, smell or go crazy, she is "normal". Maybe they are all like that in AL and it is normal?
One thing which could be what you are experiencing: people with dementia often can "fake it" and act normal around others. Mom has done that for years. She shows her true paranoid, confused, irrational self to her family and often takes it out on us. (She doesn't even remember calling me 5 times the other day.)Chances are your grandmother doesn't remember either. Each time is the first time she thinks.
Your grandmother may be doing a great job of fooling caregivers. I'm disappointed in caregivers because they do what they have to do, but they work in shifts and don't really "know" the person or bother to "know" them - you are right.
I'm not sure psychosis and neurosis are applicable terms for ALZ, dementia and cognitive loss. Best to check for clarity's sake and so you come across as bright as you are. I am in awe of your fortuitousness. Wherever you go to college should give you big scholarships. Warm regards, Pat
The thinking you hate her thing - my daughter would say "aw, poor li'l Granny!!!" She's not necessarily playing victim, she's probably struggling to work out what's changed. Send her a jolly card saying you're rushed off your feet but love her loads and you'll see her soon (((hugs))) - that kind of thing. You need to break that close association in her (and others') mind between loving your grandmother and being held wrongly and grotesquely responsible for her wellbeing.
I am writing to give moral support and to tell you not to feel guilty. I am a 70 yr old retired RN, who is responsible (from far away) for both my parents. My Dad is already placed in a facility due to his dementia getting so bad. He is 93. Mom is at home and now with caregivers and is 89. Her dementia is getting worse. Here are a few things that others have had to teach me...the RN who has been a caregiver all through my career...
1.Caregiving with a relative is NOT about giving them everything they want. It IS all about keeping them in a safe situation first of all.
2. When the person needing help is up and down at night; falls a lot; has problems with being incontinent; has dementia or is argumentative, violent or uncooperative....think about this....in a care facility, or a hospital, nursing home or such...the caregivers are 'on duty' for 8 hours or 12 hours. NO ONE does it for 24 hours/7 days a week with people who need that kind of assistance....so no family, without the skills and training even, should be expected to do it 24/7 in the home! You don't do this 'just because someone is family' Many caregivers who take on this 24/7 stuff end up dying long before their time, from the stress of it all.
3. It is MUCH better for your grandmother, and anyone else's family member in need, to have a loving family member come visit them, AS FAMILY....than to have them over stress, short tempered, too tired to even talk and potentially resentful of the responsibility.... and let STAFF do the physical care needed. Your grandmother is going to appreciate you coming to visit, and bringing a little treat or gift and just being able to sit and talk about her, and gather her family history while she is alive, to get her talk of her childhood and pleasant memories of her life.... that is a 'gift' you can give to her in lieu of just 'caring for her' at home, until all this crises happens again. Commiserate with her about how you agree it's tough getting old, but stick to the line of 'the doctor wants her to be where she is until she is stronger'....and 'put the blame elsewhere' while you are there as her friendly loving granddaughter....the bright spot in her day! Move towards, just being her friend.... That is the kind of 'care' she needs from you!! Your life needs to move forward. YOU are your grandmother's legacy....and if she could see and feel more clearly, she would want you to go about your life....your future and for you to BE her legacy too! I do hope this helps you! It took me a LONG time of dealing with a difficult Mom to come to this understanding myself......
Can you get an assessment lined up ready with her GP/PCP for when she's discharged, if the SW is still harping on the 'temporary' theme?
If you get more BS answers, then the next thing you say is "You're not listening."
Pause and repeat "You're not listening." Social workers pride themselves on listening skills so this should stop her cold from rambling on with more BS. You tell her firmly, "The discharge plan to send her home with me as her caregiver will not work. She cannot stay at home alone - we both know that, and I cannot and will not stay there 24 x7 with her." Rinse and repeat. Demand to talk with her supervisor. Demand to talk with the physician. If they try to blow you off, you tell them you will call the ombudsman and the office of long term care.
Is it possible the SW is inexperienced or dense enough not to realize that GM has dementia??? Otherwise, This. Makes. No. Sense.