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At breaking point...

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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.

Age Related Decline Care Decisions Skilled Nursing Facility

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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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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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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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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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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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Most people think as was recommended..calling APS..is a bad thing but they have given several families I know..in home care temporarily.

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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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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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Thank you so much. I'm so sorry about your husband. Sending lots of hugs your way too.

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I would call me Medicare, the Dept of Health, Dept of Aging in your area.

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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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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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The nursing home will help with setting up Medicaid once Medicare no longer will fund the cost. Don’t let him be discharged as it sounds like he can no longer care for himself. Is your grandma in need of a nursing home also?
if she has fallen or does fall she may need to leave her home also.
Do not be quilt tripped into taking them home as “ you promised need to put me in a home “ no one ever has that right to make you say such a promise

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Things got worse and he fell again while my mother was there right with him overnight (he is extremely tall and it takes two of us to keep him upright). She did manage to keep him from going down hard, but he was extremely confused and a became a little combative (which hasn't happened before). So, if he lets it happen, the hospital agrees he needs to be transferred to a nursing home for physical therapy because he simply can't stand or walk without two strong people to assist. We found a nicer place that does accept Medicaid and we have had experience with them before. Since we didn't realize we needed the POA before now (with all the newer mental confusion) it might be tricky getting him to go or even stay, but we're working on it. Both of them are caring and don't tend to guilt us at all. If anything, my grandmother is very aware of us being on hand 24/7 and we have to convince her that it's just what we do because we're family. The relationship there is a very good one. I just don't think either one of them are having an easy time realizing that this is where things are now. Which I understand. We'll get through it. It's good to be able to come here and get advice and just understanding (with the exception of one particular comment above which I am trying to breathe through and not take personally). I know everyone has something they're going through.

Oh and yes, my grandmother is also in need of care. There's a chance she could get by with assisted living, but I think not being with my grandfather is going to be really rough for her. Ideally we can get them together, but I know this is hard on them both. We're gonna make it though. Thank you for your kind comment.

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It does not sound like they are NH material unless you are trying to just ditch them so you can get back to your real life guilt free or such.

This is what you do, you suck it up as a life throws you curve balls and speed bumps. You stay with them till grandma is better and make sure grandpa doesn't have anything serious going on except for tripping over a carpet-maybe buy him new shoes, encourage use of wheelchairs and walkers-go to his doc with him. GET THEM ON MEDICAID which can and will provide inhome support.

If you cannot do that, you hire someone to stay with them. Give them a chance to heal from the fall. Give it a month, or two. If things STILL stay on the down hill slope you talk ASSISTED LIVING...not just waste can them into a *hithole nursing home because you are frustrated. Its all about speed bumps with elders. There are bad patches and then there is recovery. Do not block that road to recovery by being so NH trigger happy.

And PS I am sure they are getting a little income and so are you and your mother. x's that by 4, toss in MEDICAID and you CAN get in home care. Maybe not 24 hours a day but someone who could cook, clean, check in etc.

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I think she's saying she can't do it so I'm not thinking "suck it up" is very helpful.

They may "want" to stay home but it may not be feasible if no one is able to provide the level of care they need. At some point, it's not really their choice anymore.

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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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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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In no way, can they continue to live in their own home. Something must be remedied that they file for Medicaid to get into a Nursing Home and that may be the best option as their health needs are probably more than an Assisted Living could handle.

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Agreed. Things got worse and my grandfather ended up in the emergency room and has now been in the hospital (admitted) for 3 days with all the planning taking place to have him transferred to a Nursing Home. The problem we just ran into tonight is that he is now saying he just wants to go home. We don't have power of attorney so we're on the edge not knowing what will happen from one minute to the next. We will have to start the POA process because I can see this being an issue anytime he gets confused. This wasn't happening much before the hospital stay, but the change of his routine really brought it to light. We'll manage, but it's just really exhausting. Also, you are exactly correct: Assisted Living would not be nearly enough for my grandfather. I think my grandmother might be able to manage that, but we're way past that with my grandfather and now we're trying to figure out how we can somehow have them together. That's probably way down the road though. One day at a time right now.

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If they are still cognizant, why not get a life alert? Just push a button and it summons help. but they have to be really cognizant, that is "with it". Another option is assisted living facility. If they can manage their own bowels and bladder they are suitable for assisted living. if they require around-the-clock care it will have to be a nursing home.

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If your grandparents have medical insurance, the company usually can help with covering the cost or assist with recommending other resources for them. Of course, they'll have to want/accept the help. You must talk more in depth with them -- for all involved. I'm currently having similar issues. I was forced to take an early retirement payout and reduce my work hours to part time status to periodically monitor my parent. I plan to move her in with me; this is the most agreeable option for me.

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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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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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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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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.

(5)

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Seriously, do the best you can under whatever circumstances. If people really wanted to help they would, freedom of choice, works both ways. Conservation of energy and accumulation of energy also works both ways.
Find your middle ground and then, stand your ground. If you have good principles and have done your homework, then you know it is incumbent on the “stronger” to help the weak.
When I help or do something, it is all the way or I don’t start. No half measures. If it is your parents who gave you the best, then you give them the best. Under all and any circumstances. It is the same with trust & Faith, and also loving someone.

I’m actually feeling lucky a certain lady everybody wrote off happened to need help and I got to know her background story a little better.

The cycle of blame is what’s killing the planet. So, personally, I choose to end it with me.

I shall all love Persecuted of The Persecuted and Misunderstood of the Misunderstood because, it is both the right thing to do and also the perfect match. No judgement, will ever be able to justify such oppression and ignorance.

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*Perceptive* help is the best help. Often that does not mean hands-on-no-matter-what help in the name of sacrifice.

This can be true even when dealing with the most loving parents, who happen to need help far beyond what family can provide.

It is always true when dealing with former, or present, abusive parents.

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Ash: Get POA in place quickly. Good luck. God bless!

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That is our immediate concern. My grandfather was transferred to a rehabilitation facility 2 days ago, and while he is cooperating for the moment, he goes back and forth between understanding the situation and completely not knowing that he can't physically stand on his own (so he tries to get up) and also can't swallow without supervision. He just wants to be at home with my grandmother. She knows he can't safely be at home right now, but also seems to be having some mental problems part of the time with strange things (sometimes delusional, sometimes a little paranoid?). We need it for both of them. Thank you for the good thoughts.

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Ash: I will be praying for you. God can get you through what seems like very difficult circumstances.

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