Breaking Point

notequipped · April 19

My Mom (78) was diagnosed with Alzheimer’s MCI about 2 years ago via Blood test, MMSE, MOCA. I don’t recall anything other than normal aging from the brain MRI at that time. She has not yet had a neuro psych evaluation. I was not terribly impressed with the neurologist that we saw. My Dad passed away in late February. Apparently, my Dad couldn’t find the kitchen in their very small house the week before he went into the hospital. It kills me that I didn’t realize that she was so bad that she wouldn’t recognize that for the emergency that it was (she took him by the hand to the kitchen. Did tell us after he was in the hospital). His cause of death was hypoxia. He called me very confused the following week after she left to go to the gym. She said he was fine when she left. My Mom has been staying with us since he was hospitalized. I didn’t realize how far gone she was. She is very social and yes’ her way through many conversations. I have not let her drive or stay in her home by herself. She doesn’t reliably know what year it is, has no grasp of her finances, how to get money, etc. She believes that she is perfectly fine to live alone, drive, etc. i had a SAGE test that I let her take (her mother had dementia, and a cousin on her father’s side died from complications of dementia - I’m worried about myself, too). She spent about 40 minutes on it before giving up. She scored a 6. I work from home. She enjoys going to the gym and I have altered my schedule to drive her several days a week (it’s 40 minutes away). I have found someone to drive her 2 additional days. She is making me crazy. I can’t take it. It’s like having a very mobile toddler. I’m constantly on edge. She sorts through papers (there is still a lot of paperwork from my Dad’s passing), constantly wants to mess with dishes, the trash (I’ve given up on even trying to keep trash and recycling separate), her pills, laundry. She still had a phone and an iPad. She can’t maneuver around on the internet in her own but is obsessed with checking the obituaries and email. Needs help with both tasks 2-3 times a day. She commandeers the TV and nothing is good enough. I almost lost it when she asked me if I could get up earlier on my day off so she could go to the early class at the gym (mornings are not my forte). There is zero appreciation for anything. Her personality is very different. I’m tired of being on high alert. I’m an only child. Every decision is on me. She will not willingly go to assisted living - she thinks she’s fine. Ironically, she was more concerned about not thinking right early on before she was diagnosed. On the DBAT, I would say she’s a solid 4, not quite a full 5 though she does check some of the boxes. I need help I can’t relax in my own house. She needs to be in long term care. I’m close to getting a handle on their finances (ridiculous number of financial institutions and accounts - no idea why). I have narrowed down AL facilities to 3. I don’t think it would be helpful to take her to see them. I’m good with whatever lie I need to tell to get her there. How do facilities determine if AL or MC is appropriate? She has an appt with her pcp in 2 weeks. Not sure if I should just wait for the appt with her pcp or try to get in with a different neuro (her primary started her on meds and ordered all testing. Neuro only did the MOCA.). She takes donepezil. There is also a local attorney that offers a flat fee for a will, dpoa, hipaa waivers, advanced health care directive and living will. The current situation is unsustainable. Any and all suggestions welcome and appreciated. One of my cousins sounds like she thinks she should be able to live at home drive, etc That just seems wrong to me. I need an intervention or something. Does it sound like I’m grasping at straws or moving in the right direction?

H1235 · April 19

Welcome. There is just so much to do, learn and just figure out in the beginning. People with dementia often have anosognosia. This is an inability to recognize their symptoms or limitations. There is nothing you will be able to tell her to convince her of these symptoms. Don’t even try! It will turn into an argument and the number one rule with dementia is never argue. Trying to convince her she needs to go to a facility may not go well. We told (not ask) mom and she was so angry and mad. She ended up accepting that she really had no other choice and went willingly, but it could have been really ugly. You are not out of line in considering a lie to get her there. You know her best. Maybe tell her you and your husband are going on vacation and she needs to stay there for a few weeks. Another common symptom is lack of empathy. My mom is incredibly demanding and as much as I do for her, it is never good enough. I’m not sure how much you have looked into facilities, but there can be a waiting list. Before mom went to Al they came to the house and evaluated her to make sure they could provide the appropriate level of care. They also base cost on the level of care needed. You may want to find an Al that has a mc attached or associated with it to make a move down the road easier. As far as the cousin, try not to give them a second thought. As you learned it is incredibly hard to really understand a person with dementias limitations and needs unless you spend days at a time with them. People with dementia can showtime. They are able to keep it together and appear as if nothing is wrong for short periods of time. I think the anosognosia makes mom come across with such confidence she is very convincing. Someone needs a DPOA as soon as possible! The lawyer has to believe she understands what she is signing, so don’t put this off. I don’t think you could get her into a facility without it. Trying to convince her of the urgent need for this will probably not go well. I would suggest you present it to her as just something she should do now that she is getting older. Do not do a spring DPOA (a doctor is needed to activate it). A living will, will and medical poa are also important. You may also want to talk with a lawyer about finances. Will she need Medicaid, what does it cover in you state, will qualifying be a problem? The lawyer assured mom the DPOA did not take any of her power away, it just gave me the ability to make decisions also (true). I had to take the credit card away and stop bringing her to the bank. This did not go well. I will attach a few resources. I hope something here was helpful.

Anosognosia and Dementia - AgingCare.com.pdf

https://www.consumerfinance.gov/consumer-tools/managing-someone-elses-money/

https://iona.org/therapeutic-fibs-ok/

https://www.medicaidplanningassistance.org/medicaid-eligibility-income-chart/

terei · April 19

It sounds like you know what to do. Get her to the attorney ‘I need to finish estate paperwork for myself and we are having done what you need at the same time’. You have found an appropriate facility. Work with them to synchronize moving her. They will visit her and assess what services are appropriate. While they are interviewing her, sit behind her so you can nod yes or no to the questions they ask. I would suggest that if it is assisted living that they also have MC available since she will need that eventually.

I agree that she does not need to visit herself. Invent a business trip you have to go on and that she has to stay at this ‘hotel/therapy’ place until you get back in a few weeks. At that point, ‘the doctor insists you stay until you have ‘gotten better. Sorry, I know it’s a pain, but I cannot overrule the doctor’. Etc etc etc. You can do it!

Ignore input from relatives. They have no idea what she is like 24/7. If they are insistent, invite them to have her stay with them for a week and then you might be interested in their opinion.

SDianeL · April 19

welcome. Sorry you are going through this with your Mom. Your Mom has Anosognosia which is a symptom of neurological damage (like dementia) where a person is genuinely unaware that they have a medical or cognitive condition. It is a physiological, brain-based lack of insight—not voluntary denial—often causing patients to refuse treatment because they truly believe they are fine. No need to discuss moving her to a facility. I would find a Memory Care facility, not AL. She needs a secure locked memory care facility with 24/7 care which AL’s do not offer. Under no circumstances should she live alone or be driving. You are doing the right thing to make sure she is well cared for. The facility will assist in getting her there. I took my DH to lunch and the Social Worker suggested I just leave him and they would get him settled in. They may recommend you don’t visit for a couple weeks so she can settle in. I am attaching a tool to help you determine the Stage she’s in. Come here often for info and support. https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

notequipped · April 19

https://alzconnected.org/discussion/comment/270667#Comment_270667

Thank you. I was already thinking about the vacation plan. I had no idea that they came to the house to do an assessment. I narrowed it down to the 3 based on locations, amenities and reviews. All of them have MC units. I’ve not contacted any of them yet so no idea what the actual costs may be but I don’t think that she will need Medicaid. I guess there’s always the possibility that she could outlive what she has though. I had never heard of the spring DPOA before. Thanks for the heads up on that. I feel so bad that I literally snapped today. I want her to be safe and happy. And I don’t want to be so stressed out by her that I’m angry and resentful. I haven’t really been able to mourn the loss of my Dad and I feel like I’ve been thrown into this situation.

notequipped · April 19

https://alzconnected.org/discussion/comment/270668#Comment_270668

Thank you for the encouragement. I think much of my difficulty with this comes from feeling like I’m doing this (AL/MC) to her. I'm not. I’m doing it for her to keep her safe and provide her with more social interaction than we can provide here. I was thinking the same thing about relatives. Even a weekend would provide a very different perspective. And give me a much needed break, too.

notequipped · April 19

https://alzconnected.org/discussion/comment/270669#Comment_270669

Thank you.

H1235 · April 19

https://alzconnected.org/discussion/comment/270677#Comment_270677

I would be cautious about her staying with relatives. My mom lived with my brother for a while after she was diagnosed. He was completely oblivious to her needs. She had fallen 6 times in 3 months, but he didn’t understand why I was concerned that she as taking showers in the house alone while he was working. He was fine with her frying bacon until she almost burned the house down. He would set a can of soup on the counter on his way out the door for work. He held her debit card, but let her buy anything she wanted (tie died sneakers, black lace push up bra, anti-aging cream….) If they don’t understand her limitations, will they keep her safe?

pamu · April 20

You may want to have her see a geriatric psychiatrist. My mom's neurologist and PCP were of no help at all managing her symptoms after her diagnosis. Her GP helps manage her medications for her behavior and anxiety issues. Sending you well wishes on your AL/MC search. My mom's MC is not esthetically beautiful at all (it's very clean) but the staff has been extremely supportive to her and to us. She's had very difficult days and they have gone well over beyond to help. We were lucky because my mom was released to this MC from the hospital (Medicaid). We've been told by doctors and people that this is one of the better MC's despite not looking like a high end hotel. Just keep that in mind when considering a place. See if you can speak with a member of the care staff/nurses.

psg712 · April 24

Yes, you are doing right for your mom and for you. I echo the comments about the AL/MC. Activities are important while your mom can still participate, but cleanliness, healthy food, longevity of staff and dementia-informed care are more important than glittery decor. Don't be lured by slick brochures and sales pitches. Ask if you can sit in on an activity or lunch. Pop in on the weekend when the administrative folks are less likely to be there … hang out in a common area and observe.

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