In over my head...

BHF1763

Hello!  I am very new to the site and new to being a caregiver.

My sister is coming to visit in 2 weeks to visit several AL and MC facilities in the area. Unfortunately my mom is willing to relocate one day and the next it's an absolute "no/you're forcing me" meltdown.   Is there a way to help your LO make the transition without a guardianship? We have a POA but I understand that isn't the same for making these types of decisions.

I may have to hire inhome help so i can get a break for my mental health. But there is only a fold out couch, so I'm not sure overnight is an option.

Backstory:

I became a caregiver for my mom on December 1st when my dad passed away unexpectedly. I had a little help in December while family was in town for the funeral, and when my sister took her to her home for the week between Christmas and New Years.  But truly it's been me at her home sleeping on the couch. I am currently working remotely so I've been able to stay here. My DH though cannot since there is not place for him to sleep and my mom has said she does not want him here overnight. My home does not work for her since there is not a room on the first floor for her. My DH comes to visit during the weekend, but when he leaves  (or any visitor does) mom becomes short tempered while trying to figure out what changed or why they left.

My parents hid my mom's full diagnosis. They told us that she has dementia, but not what kind and I can't get a straight answer from her doctor. We have good days, but I have seen a lack of short term memory, anger, aggressive behaviors, wandering at night, accusing, hiding things, paranoia, false memories, delusions, and, as she puts it, "legs not working" with great tremors and she has even fallen during the night. I'm working to get her into her neurologist asap since they stopped going due to covid. With the verbal and emotional abuses I've encountered,  I can only imagine what my sweet dad went thru and my heart breaks.  

Thank you for any thoughts on getting proper care and support for my LO!

LicketyGlitz

Hey BHF,

This is a common problem for a lot of us dementia households, placing someone who is not agreeable to the idea from one day to the next.

The legal and medical issues cleared up would be a big help to you. Is your mom still legally competent to make her own living arrangements? Would an A/L or MC refuse to take her at her current level of cognitive ability?

Her doctor should be able to provide you with a letter stating her current cognitive level, and if her doctor is uncooperative see if the neurologist will. And if her doctor continues to be uncooperative, get a new one. I totally understand a doctor wanting to protect their patient but at some point in dementia it becomes a huge problem if the doctor will not work with you the person who has to make these decisions.

If neither of them feel your mom is there yet, then you could try an elder law attorney - that would be my next guess as I never had to go through this. Hopefully someone with similar experience will have a better answer for you.

As for the facilities themselves, MCs often work with the families to bring a new resident in in the most comfortable way possible. COVID makes it harder to integrate your mom over time, but def ask the MC folks for suggestions, they're professionals at this!

My sister and I took over my mom's care after my dad died, so I know where you're coming from! I would also recommend a visit to a geriatric psych doctor for some medication help with her behaviors. My mom's geri psych doc ended up being the most important person on her care team - always helping us with meds that could give mom some relief from depression, aggression, rage, without knocking her out, and in turn gave us some relief too!

Good luck to your family! This is a tough journey, REALLY TOUGH, but not without its rewards.

MimiMinder

Welcome to the group. I don't want to sound unkind or blunt, but it would seem that your mother is beyond the services of AL. I recently moved my mother from an AL facility with (theoretically) 'dementia trained' personnel into an actual MC facility. Oh my gosh - what a tremendous improvement in her care and quality of life.  

I totally agree with LicketyGlitz that an evaluation my a geriatric behavior specialist would be well advised. My mother's specialist was able to look at her medication cocktail and see what changes would be most beneficial. Truly a game changer.

Getting in some help sounds ideal - whether for daytime or overnight. You can't manage 24/7 without going a bit bonkers. Eveyone talks about self-care for the caregiver, and while you think you don't have time for it, you need to make time! If you burn out, things turn dicey quite quickly.

Having a supportive spouse is very helpful. I know I thank mine frequently for being a partner on this often unpleasant dementia journey.

Please do take care!

SusanB-dil

Hi BHF - welcome to 'here'...

Sorry for the loss of your dad.

If your mom is not accepting this information, you might want to just stop bringing it up. And yes, you do need to watch your own health and wellbeing.  In the meantime, do research the care facilities in your area. You may have to exclude her from the final decisions. It sounds like she is not willing to accept diagnosis, (see 'anosognosia' - not denial, but not seeing any problem) and trying to explain it to her will only leave you both frustrated and probably just get her angry. 

i agree with LicketyG that if current doctor is not willing to work with you, find another.  A neurologist would probably prescribe an anti-anxiety med (MIL has seroquel) that will help with the outbursts and short-temper.  i also agree that it sounds like she is past AL.

towhee

If you hire someone for an 8 -12 hour overnight shift they are not really supposed to sleep. If you have a couple of chairs they can switch between that should be ok, not good but ok.

I hope you get that appt with the neurologist, do you have an HPOA?