Undiagnosed Gram - In need of 24hr care & I need to get back to my life

supermomwife

I love my gram more than anything!! However, I’m facing a difficult situation where she can no longer be left alone but I also need to get back to my life which is 1hr away. I have a business I run with my husband, two teens, and two huskies. I cannot be gone long. I live 1hr away as does my father. He will have POA once invoked but is not yet.
I was gone at her house for a week and half up to this holiday weekend. Friday, I packed her up and brought her to my house for the weekend. Figured we would try our consideration of moving her into my house. Plus, I had to come home to take of things only I can do. My dad is not capable of caring for her at all. He wanted to bring her to the hospital until a facility was able to take her in.
I’m heading back to her house with her tomorrow due to doctors visits in home and trying to setup 24hr in home care. She also does not want to be at my house. I don’t blame her and quite frankly I don’t have the ability to care for her here. I feel so guilty! At the end of this week, I have to come permanently and get back to business. I have no choice. I don’t have any other solution on my end. I don’t even actually have a bedroom to spare. My daughter can’t sleep on the couch for a long time. She sleeps terribly there and she’s only 16 so sleep is very crucial! We tried alternating beds but we cannot do that forever. We all need adequate sleep. I’m at my wits end. I’ve asked the workers making visits to her home for help. I explained the importance of me going home. They give me a list of in home providers and most of them take forever to setup or staffing isn’t available. My understanding is it is not reliable. Assisted living would most likely require her to go into memory care. Not sure whether right away or once she is actually diagnosed. She is currently not diagnosed. My understandlng on that is, the waiting time is forever in New England and then I have heard stories about the transition is not pretty. I feel awful but I have to live my life too.

Her coming back to my home after this week is not an option. Also, I think it won’t be easy to get her to come back as she doesn’t want to be here. It is way too much for her here and she can’t even shower because it is so unfamiliar to her. Nothing is really ideal other than having my daughter’s bedroom on the main floor that is next to the bathroom. However, it is close to the front door. I’m not putting locks in the doors to lockus in every night. That would be impossible with teens coming and going. My kids have jobs and school and are fully busy all the time just as we are. We don’t have time to even bring her out with us when we need to leave. She moves incredibly slow. I can’t exactly bring her on a contracting job with me to paint the exterior of a three story home.
Alzheimer’s Association devised a plan where they wanted me to really give this weekend a go and then have her stay with me until she can get into a facility. That ship clearly sailed this weekend. I feel so stuck and isolated. This is like my worst nightmare ever. I love my gram dearly as I do all of my family but, at the end of my rope. This week is it. Not sure how to get this all to come together so I can leave without her at the end of the week.

Victoriaredux

@supermomwife

I'm glad you found this board, many folks have walked this path before will offer you ideas, help & understanding.

First : No guilt- you didn't cause your Grandmother's health situation, and you didn't drop the ball as it seems your Father may have - as the DPOA to be he could have researched places near him , many have wait lists, gotten the Doctor's letter(s) if that is what triggers the DPOA to be active.

Is he managing her finances? If not who is?

As DPOA it would make sense to have your Grandmother be near him -one hour his way versus in her town or one hour near you. Has he thought of how he will coordinate her medical appointments, any future ER visits etc.? Most patients get sent alone to the ER from AL/MC which can be confusing and upsetting. Does he have any interest in actually handling her care,even when placed?

If his attitude is the AL/MC will handle all that , they don't- in which case he can explore hiring a professional case manager or even appointing a professional conservator to be paid by her funds to oversee her care. Then you and your family can visit as family members and not just do crisis visits.

Most folks say "yes" to being a DPOA thinking it is like being an executor but there are the care needs of a dependent adult that need to be coordinated and the time frame can be years.

The hospital isn't a holding zone for a bed in AL/MC , medicare rules bounce folks out to skilled nursing or home that don't need medical treatment versus care giving oversight . You can discuss options with her Doctor , maybe they can offer ideas to get some coverage.

Suggest you and your Dad discuss where it makes sense for your Grandmother to live and then start calling for available beds, the home will do their own evaluation for AL/MC. A case manager may be a good hire at this point to help sort the facilities or get a home health agency to staff quicker- since they are an ongoing client of the agencies vs one family. The first few days to weeks of staffing at home can be rocky until you get a steady crew- so someone would need to be around evaluating how things are going, secure valuables etc.

If your Father hasn't already consulted with an elder law attorney already about how best to fund AL/MC, how medicaid coverage in the state your Grandmother will be living in works etc. now would be a good time to consider that. The attorney will also probably have a list of case managers, prof conservators, maybe even home health agencies they've had experience with that they can recommend.

I'm sure others will also offer you ideas and support. Your Grandmother is fortunate to have a loving granddaughter to help her through this. Careful on the ladders!

supermomwife

https://alzconnected.org/discussion/comment/273139#Comment_273139

Thank you for your thoughtful insight. We have looked into the closest facility to him. My concern is the wait time. I have been taxiing her around to groceries and drs apts. He has been handling her finances for the past 6 months. Future ER visits and doctors apts he would want me to handle as I’m already aware of more than he is with her. I can see working out with him where we alternate them between each other. He has no clue what he is dealing when it comes to POA. He doesn’t even know he’s supposed to contact the attorney at this point. Honestly, I have been so concerned with her safety and where she is staying so I can go home, that I never gave it a thought.

H1235

Some facilities will take people for a temporary stay. If family needed a break for a week or two for vacation. So maybe you could make a temporary arrangement like this until a room is available at your preferred facility. 24/7 in home care is going to be a lot of work to set up. Then what do you do if someone is a no show. While your dad is the DPOA it’s sounds like you are going to end up doing a lot of the work. I would want her to move closer to you. I don’t think you need a diagnosis to place her. You said the DPOA needs to be activated. Have you seen it and read it or is this your dads interpretation? It’s my understanding that only a spring form DPOA would need to be activated. To activate it I believe you would need a letter signed by two doctors stating she is not capable of making decisions for herself. I’m not sure a specific diagnosis with all the testing would be required for that. If she is far enough along that should be clear with basic questions. It’s definitely important to see a lawyer. You may find it convenient to use the mc doctor. This will cut down on doctors appointments. I agree you should not feel guilty. It sounds like you are working very hard to take care of your family and your gram. We have our limits. Her local commission on aging may be able to give you some suggestions. I hope you can find a solution.

notequipped

@Victoriaredux

How does one go about hiring a case manager? I don’t think that I’ve seen that referenced here before.

Victoriaredux

https://alzconnected.org/discussion/comment/273145#Comment_273145

Here is a non-profit assoc website that explains about the field :

https://www.aginglifecare.org/

A social worker at a AL/MC or hospital can probably also offer leads on case managers they have worked with.

Maru

There is no point in assigning guilt here, esp. on yourself. Have you tried her local city Social Services? Your need is pretty immediate and if you have not options they may be able to help and might be more immediate than dealing with an agency online. You have no legal footing here but it seems that you are the responsible one, not your dad. That means that you need the DPOA and that needs to be signed by grammy while she is still capable of signing. I don't think you want the State to get involved and assign some stranger to be her legal guardian. The one who will be making all the decisions needs to get an attorney pronto. Sorry that you find yourself in this mess.

H1235

https://alzconnected.org/discussion/comment/273159#Comment_273159

Just tacking on to this a bit. If your dad is older, it could be that your gram out lives him or he could develop dementia. You just never know. At the very least it would be good if you were listed as a secondary.

supermomwife

All valid thoughts and points here. Very helpful. The POA and all other docs are setup with an attorney already written up. We have property and health. I only have a copy of the property and will. I don't have a copy of the health one but, have seen it and made him copies. It's all in a massive estate binder. Unfortunately, I don't think it would be very easy getting me added. I'm entertaining the temporary stay. I just hope theirs good people for her to talk to and good food. haha (Trying to find a positive here).

After speaking with my dad today, we are going to complete this final meeting with an in-home care agency we have been using for day visits. If they can't get us adequate 24/7 care this week and confirm by tomorrow during the meeting; My Dad is going to work with the local facilities to try to get her in there. I will mention that he ask them about immediate temporary stay.

It so sad, here I sit with her on her couch and she is SO happy to be home with her pet and this is house set up perfectly! :'( My daughter has two years left, I can't even move us all down here. My kids are established to get their beginning life affairs together at our home not here at her house.

As for Social Services. She has in home health care coming frequently. They have provided as many resources as possible, they were supposed to schedule a "social worker" visit to better assist but, I have yet to hear anymore since that convo. That was last wed or thur. Gosh, I can't even keep my days organized at this point.

My father developing dementia is making me more and more nervous as he is becoming more and more forgetful. Visited him today and he struggled to remember several things. It also could be because he is stressed and worried about all of this. I also worry I'm overthinking it too. It's like one of those things that you have to be careful you don't become a hypochondriac! Yeesh!

There are so many pieces to this puzzle. I know we will get through all of this, it's just that we are in the thick of it now and getting down to the wire. It's truly nail biting.

Thank you to all for just being here and thinking this through with me. The community and support resources for these diseases is PHENOMENAL!

Victoriaredux

Sounds like your Grandmother had a complete estate plan drawn up, asking the attorney to do a consult on it with you and your Dad could be a good way to get filled in and discuss what flexibility is in it if an update isn't possible. Also, to discuss current medicaid institutional coverage options- it's not just a low income program . Varies by state and every person's finances are different.

Our estate atty gave us a memory stick with all the forms to make it easier to transmit to insurance companies, hospitals etc. Photocopy/fax is a pain . Some folks put the main docs - healthcare proxy/DPOA on their phones to always be ready.

You're right -you are in the Alice in Wonderland cards all up in the air stage . It will calm down as you work out your family's best plan.

H1235

I found that lawyers set the competency bar pretty low for making legal decisions. She may not be willing to make changes if you bring up her symptoms and needs, but if you talk to her about your dad getting older and the need for a backup (in case something were to happen to him) she might go along with it. Of course this is just one more thing to do, but it could save you a lot of work if something were to happen to your dad.

JPJardinel

This is such an impossible spot to be in, and the guilt you're describing makes complete sense even though it shouldn't have to fall on you this hard. What really stands out reading this is how many directions you're being pulled at once, a business, two teenagers, an unconfirmed diagnosis, a father who can't take this on, and a grandmother who herself doesn't want to be uprooted from her own home. The weekend trial sounds like it gave you real, concrete information rather than just guilt, since it confirmed she's not adaptable to an unfamiliar space and that your house genuinely doesn't have the room to make this sustainable, even temporarily. The bit about your daughter not sleeping well on the couch is such an important detail too, since it's easy for everyone's needs to get treated as optional except the person who's struggling most, and at 16 her sleep matters just as much as anyone else's in the house. I also think it says a lot that you're not willing to install locks just to make an unworkable living situation work, since that's not really a solution, it's a band aid that creates a different kind of risk for everyone, including her. It sounds like the realistic path forward involves leaning harder into in home care or accelerating whatever placement option exists, even with the frustrating wait times, rather than trying to force a version of this that already proved unworkable over the holiday weekend. You're not failing her by needing boundaries, you're just facing a situation that genuinely doesn't have a clean answer right now.

I also got my references here:

https://hopebridge.care/caregiver-boundaries-and-guilt-why-youre-allowed-to-have-both/

https://en.wikipedia.org/wiki/Caregiver_burden

https://www.psychologytoday.com/us/blog/brain-boost/202502/what-is-caregiver-guilt

CantonCaregiver

You shouldn't feel guilty. You clearly love your grandmother and have done everything you can for her. Sometimes one person just can't provide the level of care someone needs, especially when you have your own family, business, and responsibilities.

It sounds like she may need more support than you can give at home, and that's okay to admit. Getting help or looking into a care facility isn't giving up on her—it's making sure she's safe.

Be kind to yourself. You're doing the best you can in a really hard situation.