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My grandparents started physically declining very quickly a few weeks ago. They live in their own apartment and have always been very independent. It started with a fall for my grandmother. She is in constant pain, will not listen or follow the direction of doctors, and now between the pain and extremely limited calorie intake, she just isn't thinking clearly. I think the stress of all of that affected my grandfather and now he is holding back important medical information about himself (which led to being rushed to a medical procedure) and he is falling as well. My mother and I have been with them nonstop for several days. Neither one can be left alone or even alone together.


Unfortunately, I also have several chronic conditions which the stress and physical needs are making worse and I'm at my breaking point. I know my mother is too. I know it is a process and not even a quick one to get them into a nursing home, but I don't think I'm going to even make it through a few more days like this before I am completely useless. I already feel horrible that I have limitations. It has been mentioned, but not discussed because my grandfather wants to continue staying in their apartment. They don't have the funds to have someone there caring for them and we don't either. What do you do when there isn't one specific crisis (like a fall), but you need help quickly? Any advice would be appreciated. I love them so much and this is so hard.

I am so sorry that you are suddenly inundated with this overwhelming responsibility. It takes a while to put together a support system and even then it’s not easy. You have gotten some good advice on contacting your local agency on aging for help. A few other (off the top of my head) suggestions of quick help that could buy you time to put together a longer term plan:

1) make contact with their primary physician. Maybe that doctor can prescribe Home Health Services. My mom’s physician did that and we had an RN coming out 1 or 2 times a week. She assessed the home for safety and changes to make to improve safety. She also monitored her vital signs and communicated with her doctor (and me). We also were able to get Physical Therapy and Occupational Therapy visits at home that helped her be more capable and safe. They also became resources to give my mom a reality check. These services are generally limited in time / amount of visits although they can be “renewed “. They could however help you and your mother quickly.

2) meals on wheels could be of assistance. Or a service that delivers food pre-cut with easy instructions (I used homechef.com) that makes food preparation easier

3)I put together a WhatsApp and FB message group of relatives giving status. Many responded and I was able to ask for help from some of them. Sometimes it was just that they came for a visit but a couple were willing to step up for more coverage to give me some respite. If nothing else it made me feel less alone and when I read some of the messages to my mother it made her feel remembered and loved.

4) my mother has an hmo plan for her Medicare coverage. I contacted them and found a “case worker/ advocate “ that I was able to talk to. He is currently looking into mobile physician options within her plan for my mom. I don’t know where you live but in Los Angeles there are a number of mobile physician groups that take MediCare.

Are there any other relatives that can help you even short term?

Nothing prepared me for caregiving and it’s gone through many phases each requiring different solutions. It is exhausting. People will say to me “don’t forget to take care of yourself “. I know that they mean well but that just makes me want to scream because- Duh, I would really like to take care of my myself but who is going to take this rock off my back so that I can still down and rest?? But it is true. There are ways to do it within time and money constraints. One of the most helpful self care things that I did was to incorporate a short morning meditation before getting out of bed. Other things that helped me: Stopping to Breathe slowly and deeply when the anxiety starts to wash over me, drinking lots of water, going to bed earlier than normal, and eating well to bolster my own reserves. And a therapist for myself.

I know that there was more that I did at this stage of her care and will add as I think of them. In the meantime - hugs!
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Ash1984 Mar 9, 2019
Thank you for all your advice. My grandfather has now been admitted to the hospital and they are planning on keeping him the necessary 3 days before releasing him to a nursing facility. Oh man, you are right about the exhaustion. It's almost impossible to fully do what I need to take care of myself, but I'm trying. I have a meditation app on my phone that I use and I've put it on my mother's phone too. Now we'll be visiting my grandfather at the hospital and staying overnight with my grandmother, but the biggest worry of him getting hurt is taken care of for now. And I do need to be sure to be getting enough water.
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Call your local Area Agency on Aging. Ask then to do a needs assessment. If the situation is dire, call either 911 or Adukt Protective Services.
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NeedHelpWithMom Mar 14, 2019
Thanks for that info, Barb. I have been thinking about having my mom assessed. Her neurologist and primary care doctor say that she has no signs of cognitive decline. I get concerned about that because I know dementia can be an issue for Parkinson's patients.

I have been caring for her for so long and really should place her in assisted living if she is well enough for that. Knowing that the Area Agency on Aging can give me specific advice is helpful to me. So nice to chat with people who have gone through this and share their wisdom.
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Read the Medicare Jimmo Settlement .. this will explain your inpatient vs observation rights before skilled care will pay.
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Ash1984 Mar 11, 2019
Yes! I found this while my grandfather was in the emergency room 3 nights ago. He was finally admitted under observation, but then switched to inpatient (thank goodness). I found out about it by looking through this site. It was very helpful.
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I truly feel your worry and pain, though my awful journey with my husband ended in November. This breaking point you are facing will take it's serious toll. Have you tried contacting the primary care doctor and talking to him/her about bringing a Social worker into the mix? Or possibly looking online for a resource group that can help you? I was very lucky to have found one in my area and could not have survived these last year's without them. None of this will be easy, I know. My husband resisted every effort too, and that hurt a lot, but your love is strong. Look under dementia care and elder help resources. Every fall, every hospitalization increases the severity and downhill spiral of their lives. They are not able to see their situationally, but you may find that their health plan offers a lot if home health help and these folks really know how to talk to them to make them safe. Sending lots of hugs. 🐻🐻🐻
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Ash1984 Mar 11, 2019
Thank you so much. I'm so sorry about your husband. Sending lots of hugs your way too.
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Ash; You and mom and grandma have to stand firm that you CANNOT safely care for him at home.

At some point, you have to balance the wishes of the elder with the realities of the care available in the home.

Check out the I'm so Disheartened and Angry thread on this board and discover the 2 year journey of a daughter in law and her attempts to get her MIL the care she NEEDED.

Sometimes you need to just stand up and say "no, I can't do this anymore" and mean it.
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Ash1984 Mar 11, 2019
I will definitely check that thread out. Thank you so much.
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Ash, now that your grandpa has been in the hospital and a nursing home is discussed, make sure the social worker and discharge planner know he cannot go home because your grandma cannot take care of him. Don't give them the impression that you will take care of them. Make sure they know that they live alone, and grandma may be heading to assisted living. You don’t need POA to tell them that. It will be helpful to have soon, however.
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Ash1984 Mar 11, 2019
I will definitely tell them that. I'm taking screenshots of any suggestions that I may need to refer to quickly since I know it will be stressful. This is definitely one of them. Thank you.
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Be honest and very clear with the doctor, the social worker at the hospital and the social worker at the nursing home. You must make it clear that you and your mom cannot provide care. Make it clear that they are being discharged back to a home with just the two of them. This discharge will likely be deemed unsafe and the social worker will have to find a placement for one or both.
Please ignore anyone telling you to "suck it up". (On this website, let's keep it positive, let's keep it kind!). Real people have jobs, spouses, kids, health problems of their own. We do what we can. If you don't take care of yourself, you can't take care of anyone else.
Medical people will go the easy route and assume you can be a 24hr nurse. I once went to pick someone up at an ER. The nurse tried to give me instructions for caring for the person for the next few days. I said, hey, I'm just the Uber driver and now I'm leaving. I told the patient---I'll fix it with Uber, no charge.
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Ash1984 Mar 14, 2019
Thank you. I decided not to waste my energy responding to that one and I appreciate the support. My grandfather is now in a rehabilitation unit at a nursing home 5 minutes from us so we are there constantly and he just transferred there from the hospital late yesterday. We are also spending nights with my grandmother because she has physical limitations. So while we are exhausted at this point, we will do everything we need to in order to make sure they are ok. Again, thank you for your kindness.
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If their income is limited..they may qualify for Ihss through social services. If either were in the military..they could qualify for in home care. Angela
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Hi I care for my mom 24/7 I know the feeling. She got sick in July was bedridden with high bld pressure, UTI, eye infections which now caused her blindness. I called her Dr fur home care but wasn't very helpful until my cousin told me to call Visiting Nurses and visiting physicians. I did, then calked moms Dr back told them to send referral to VNA. So had them temporarily for a month with aides, social worker etc. Medicare pays for it. You should call Medicaid for them too. The social worker should help you if she's good. It was alot of work on my part with VNA/GPS but helpful. Good luck.
PS I'm trying to find good meditation or prayer to start my morn, any suggestions
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Ash1984 Mar 11, 2019
Do you have a smartphone? If you do, there is a free App called Insight Timer that has thousands of different meditations, guided breathing, calming music, everything. I use it and just put it on both of my parent's phones too. If you don't have a smartphone let me know and I can find something else to recommend to you. I was a librarian before my health problems kicked in and can usually find something. Plus I find calming things like the meditations helpful too. Also, thank you for the advice.
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Without knowing your grandparents' finances or even the state you live in, it is hard to give specific advice. However, they may qualify for help in the home through Medicaid or other community services. My parents were low income and when they were going through something like what you are describing, I was able to apply them for Medicaid. Doing that made the long-term care application a few months later easier for dad, and allowed my mother, who lived at their home some help there. The in-home care doesn't require one to be as poor as Medicaid demands. Other possibilities are meals on wheels which also doubles as a well check and programs such as fuel assistance and food stamps that can free up money for private in-home care. If your grandmother or grandfather is a veteran, they may qualify for reimbursement of some medical expenses like supplemental insurance premiums, the cost of adding railings and other adaptive things; again, that frees up a little money for private-in home care. Your family needs to assess their needs and what programs they might qualify for. Your grandparent's needs are something that can change from day to day and each grandparent may need different things. Try to balance the needs of each without sacrificing one for the other. In other words, protect and encourage the independence and quality of life of your grandfather. I just read that your granddad is in hospital. They are keeping him for three days so that he will qualify for rehab. Give him a chance in rehab to see how fit and well he becomes. He may be able to discharge in much better shape. If so apply him to a community in-home program, like Frail Elder Waiver that can provide adult day care programs or in-home personal care and help with light housekeeping. If he qualifies for a program like that, it often helps when and if he requires a nursing home. If grandmother needs long-term care and grandfather stays in the apartment, that's what you do. Medicaid Long Term Care allows the community spouse a certain number of assets and income so they can pay for home expenses. Just make sure that if it ends up this way, that granddad can get to the nursing home regularly to see her (ie. council on aging vans, taxi, and rides from family and friends.) My journey with mom and dad started in earnest in 2014. It was my dad who required nursing home care first, while mom lived at home for another 2 1/2 years. She received help from a community program until a fractured hip and other medical issues required nursing home care for a year. There was a point where they were in the same facility (he in long term nursing and she in rehab) and it was so much easier to see them at the same time! But they had to qualify for nursing home care and often, they weren't on the same timeline. Good luck with everything. Hope this helps.
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Ash1984 Mar 11, 2019
Thanks for the advice. I think this could be something that might help with my grandmother if she would let someone in. Things have turned more serious with my grandfather and he needs to be in a nursing home. Fingers crossed that he actually lets the hospital transfer him tomorrow. Things just went down really fast. We are in TN and they make just enough through his retirement and SS to live on, so Medicaid will definitely kick in for him if/when he goes. We'll definitely have to look into the home care help for my grandmother if she's on her own now. This 24/7 constant activity and care on our part isn't sustainable mentally or physically.
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