Late middle stage dementia

Al2024

I need some advice about my GF of 13years. My GF's dementia has been getting worse over the last 6 years. We live in Florida. She is at the point that she didn't recognize me when I drove up to her in my golf cart. She also didn't recognize my son last month. She has left at least 1 pot burning on the stove. She has gotten lost at least once golf cart driving from my home to hers. She has a 10 min forgetfulness time. I've been doing her income tax for 4 years because she can't do anything complicated. She had a small accident that totaled her car so she no longer drives. Her son has come down from Maine and is staying with her. I asked him to call me to discuss her. He said OK, but never called me back. Due to the cold and her having been sick we haven't seen each other for a week. I'm in my 80s and can no longer handle taking care of her. (I have medical issues) Also, get stressed out by her forgetfulness and condition. Also, I get stressed out by her forgetfulness and condition. I have a plan and would like your advice on it and any other suggestions you might have. My plan is to call her and lovingly tell her that she and her son have to sell house and go into an ALF. And we can no longer have a relationship until she does that and moves to an ALF either here or in Maine. We'll stop calling and seeing each other. I have not wanted to hurt her, but doing this will hurt her because I'm the only friend she has here. For a week I haven't been sleeping well and at times I get very sad. Thanks for any responses to my plan.

easy23

Sorry to hear of your dilemma. Who has your girlfriend’s power of attorney? That would be the decision-maker. I would try to talk to her son again. Your plan is good except I wouldn’t break up with her. She won’t remember. Just let her move to memory care.

SDianeL

Welcome. So sorry about your GF. It's a heartbreaking disease. We understand how you feel. I would try to talk to the son again. You can read some of the posts here to him or tell him to call the Alzheimer's toll free number 800-272-3900 for resources in Florida or Maine. She needs a Memory Care facility not an ALF. An ALF is not locked & secure and does not have 24/7 care she needs. She needs Memory Care which is a locked facility so she can't wander and is staffed 24/7 by caregivers experienced caring for dementia patients. Her son should decide whether to move her to Maine near him. It would be better if she moved to Maine to be near family to oversee her care. It's extremely difficult to manage care from a distance. Another issues is cost. Medicare does not pay for long term care. Medicaid does but she would have to qualify. Her son needs to meet with an Elder Care Attorney to find out what his options are for MC in Florida or Maine. Each state administers it's own Medicaid and the rules vary by state. Tell her son it's urgent that you speak with him about her long term care. Tell him to come to this online community for answers and support. Your GF's safety depends on having 24/7 care asap.

H1235

Since the son is probably the decision maker, I’m not sure telling him what he needs to do is the right approach. I have attached a staging tool. I would suggest filling this out by checking off the symptoms you are seeing and giving it to him. I would express your very grave concern that she is not able to care for herself and live alone. If he refuses to listen or will not even talk with you, you might need to consider adult protective services. So sorry you are going through this.

DBAT.pdf

Al2024

https://alzconnected.org/discussion/comment/265352#Comment_265352

Thank you for telling me about Adult protective services.

Al2024

Thank you for the Assessment Tool. I texted him and he hasn't called - yet? I don't think he's very bright.

Al2024

You're right. She does need to go into Memory Care, now that you told me. But I have to take it slowly. When I mention ALF she gets very defensive and says there's nothing wrong with her. I guess she forgets what she forgot.

H1235

https://alzconnected.org/discussion/comment/265355#Comment_265355

I have another link for you. Most people with dementia have anosognosia. This is the inability to recognize her symptoms or limitations. Discussing these issues with her will probably not go well. Trying to get a loved one to understand they need more care will generally not work. Some even become uncharacteristically angry. To the point that the person with the DPOA needs to just make the decision regarding care and living arrangements and make it happen without consulting and usually not even telling the person with dementia until the day of the move.

Anosognosia and Dementia - AgingCare.com.pdf

Al2024

https://alzconnected.org/discussion/comment/265364#Comment_265364

WoW!! Anosognosia?? OMG!! More? Her son who's here actually stole $66000 from her in 2021 . I told her then, but she didn't want to hear it, so I don't say anything now.I need to get away from all this.

trottingalong

https://alzconnected.org/discussion/comment/265368#Comment_265368

I would just stay away. You have attempted to contact the son twice and he hasn’t responded. For your own health it’s best to walk away. She’s at the point of not recognizing or remembering people and the responsibility lands on her family. If you find that he has left and she’s alone, I would call adult protective services.

M5M

Trottingalong is right……someone needs to step up, but you have no legal authority and need to protect your own health. You have done your best in reaching out to the son, but he has shown his true colors because he doesn't respond and just incidentally stole $66,000 from his mother a few years back. At least in my state (not Fla nor Maine) there is a process where you can make an anonymous referral to a local judge —the one who hears adult protective cases—and if your referral letter is documented well, it should be taken seriously, there can be a guardianship hearing and the person placed in care with a court appointed guardian. You likely need to talk with Adult Protective Services, or an attorney to learn the procedure in Florida. You need to think about and document the many situations you have mentioned here, and whatever more that you know about. You could also decide to leave one last message for the son that you will need to report her situation to Adult Protective Services, so he can't say "he didn't know she was in such a bad state".

Sunfish47

I live in FL also and we have a lot of 55+ homeowners communities here. Sounds like you are in such a community. I would, in addition to calling Adult Protective Services, also notify the on-site community manager about her condition. She is a danger (leaving pot boiling on the stove) not only to herself but to the larger community. The community manager will get involved to coordinate with Adult Protective Services to get her into a safe living situation. This is a common occurrence in 55+ communities.

Al2024

Thank you all for your help. I have separated from her for 3+ weeks now - I haven't seen her, but she still calls ad texts me. I pretend everything's fine but give her an excuse for not allowing her to visit or exercising together. I called Florida Adult Protective Services and submitted a possible neglect report. A woman came out and talked to both of them. The APS worker told them she could not buy a car after I told them that was what they were doing. Her son came down here in Jan and left today leaving her without a car, plus he hates me for some reason, so he won't talk to me. APS says that they don't have a medical paper saying she's incapable of living by herself, so they won't do anything for her. She only has a golf cart and can't get to her doctor because she can't remember the way. (since I have no legal rights, the doctor won't talk to me) She's on antibiotics for a face rash but probably will forget to take them. I'm 86 years old and have pulled back from seeing her because I worry about her and can't sleep and feel the stress and anxiety. Plus I feel guilty for not helping her. Any suggestions?

harshedbuzz

@Al2024

Ugh. What an ugly situation.

I can't speak to what your next steps are to be OK with prioritizing your own wellbeing, but I do agree with @Sunfish47 that FL is generally fairly proactive about intervening with at-risk elders.

Since the son has left the area and you have no standing to provide meaningful assistance, she's likely to hit the wall fairly quickly in which case the local police and/or APS could be called again to do another well check.

HB

Al2024

Thanks HB. I did call Alz.org and they recommended I call her doctor and.\, if they will listen to me tell them to make an appointment and get her to see the doctor.

Al2024

I am very disappointed in the support - or lack of support - by the APS worker who went there to interview her and her son. The APS worker intimated to them that the mother actually did not have dementia. The APS worker let her purchase and drive a car and the son left thinking everything was fine and that I was exaggerating the problem. But she developed shingles 3 weeks before he left and went back to Maine. Although he took her to see a doc, he left while his mother was sick with shingles. He didn't tell me and she didn't remember going to the doctor's and being told she had shingles or what meds she had to take. It took me 2 days to convince her to go to the doctor because I had no idea what it was. She ended up in the hospital with extreme agitation and didn't know where she was, so they are keeping her sedated. When the son called to talk to his mother I learned that he knew she had shingles and all the rest.

In additional to all this, the APS worker told him that I said that he stole $66,000 from his mother in 2021, which I did in the original report. Of course he denied it and tried to cuss me out. I was told that the APS worker would keep me anonymous.

Would it do any good to call the Alz Assoc and report all this? I'm sure they are short staffed and probably will blow me off.

Al2024

I called them after I read this again and I was right. They gave me excuses until I interrupted and told them I just wanted their person to get more training. No apologies, so I guess they are blowing me off.

M5M

I think you should consider calling Adult Protective and file a complaint that "anonymity was not provided." APS has put you in an awkward position that likely sours any hope of interaction with the son. In my state, reporting elder abuse is guaranteed anonymity, and you certainly didn't get it this time!.

I also like the comment above about contacting the Community Manager to alert her of the situation.

Your have been diligent in your attempts to help. This situation is so stressful for you, and you need to be commended for looking out for her, especially with all the difficulties.

You could also write a letter to her primary care doctor, again outlining the dangers to the GF, and requesting that the doctor refer her to the court system for protection. That is a way the medical community can make referrals to protect a patient.

Al2024

Thanks for your response. Her shingles got so bad she had to be hospitalized and her son flew back down. I haven't seen her since he arrived and I don't intend to ever contact her again. This is a good way to end this. I understand that they will sell her house here and move her back to Maine. I hope they will do right by her. The only good thing is that no matter what happens she won't remember.