At a Crisis Point in LOs care.

DotBern

 My mom is 83 dx with MD. She lives in her own home. Her only living sister has had dementia for a few years. They are very close. My aunt, age 79 moved into my mom’s home (at my mom’s insistence) almost a year ago as she could no longer live alone. Allowing this to happen was likely our first mistake. She is extremely dependent on my mom. My mom was able to care for her in the beginning, but her own decline began a couple months after my aunt’s arrival.

My cousin (a single guy) and I are only children. We put the necessary safety aids in place at her home and hired daily caregivers as I live an hour away (awaiting a new home to be completed closer to my mom). My cousin lives very close by and stops in 1-2x a day to check on things. I was driving up 2-3x per week, staying over one night, shopping, cooking, freezing meals, dr. appts etc.

My mom’s cognitive abilities continue to decline. She never accepted her DX last summer and is becoming more and more delusional. Doesn’t believe she lives in her home that she is merely visiting as only one example. I sold my mom’s car a few months ago. She is no longer able to fully recognize my aunt’s dementia. It’s wonderful they have each other to reminisce with but I’ve witnessed their conversations taking wrong turns and believe living together is now causing my mom’s dementia to increase more rapidly. They believe each other’s stories which are mostly made up and delusional. My mom has no alone time as my aunt is so attached. I see the weariness it causes my mom.

We are at a crisis point. I need advice. Sorry for this long-winded story. My husband and I moved in 3 weeks ago to care for them fulltime and to get a plan in place to take my mom to live with us or into AL and get my aunt into a NH. Our new home should be ready in another 3-4 weeks. My mom is resistant to make a change at all but mainly because of my aunt. My cousin does not communicate well and has been dealing with getting his mom on Medicaid for months to move her into a NH. Says he hits roadblocks etc. I’m not sure what to believe. I believe if my aunt is removed from the house, my mom will more easily agree to live with me or go into assisted living.

I have only 3-4 weeks before a decision/plan must be in place. I cannot let them be on their own anymore. I’d prefer not to take them both to my home as much as I wish I could, it would be too much. I think my cousin should take his mom to his apt. (although small) and let her live there until his mom’s Medicaid is approved and can move her into a NH. He has made it clear he does not want to take care of his mom, “he didn’t sign up for this” (like any of us have). I think I could get my mom to agree to make a move if her sister was out of sight but cared for, yet I’m not so sure how patient my cousin would be with his mom. I feel like I’m between a rock and a hard place. Thank you for any insight. I am seeing an elder care lawyer today; in case I need to get guardianship of my mom. I do have DPOA. 

[Deleted User]

The user and all related content has been deleted.

Ed1937

I'm sorry you are in such a hard spot. Your mother has anosognosia. If you don't know what that is, here's an article on it. https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm  

Taking care of two people with dementia will likely be too much for you. Your cousin needs to step up to either help with her care or have her placed in a memory care facility, if he can find one that takes Medicaid. If he can't find one, another long term facility will likely be in everyone's best interest. It sounds as if your mother is somewhere in middle stage dementia, while her sister is further progressed. Would it be possible for someone to take your mother to see her sister on a regular basis if she were in a long term environment? To me, that sounds like the best bet.

If your cousin has been trying to get Medicaid for his mother for several months, I'm guessing he did not see a CELA (certified elder law attorney). If you haven't seen one yet, it's past time to do that. It needs to be done while she can still make rational decisions. Failure to do that will surely be a big mistake. That should be on top of your to-do list.

If possible, use your mother's money to pay for all of her needs, including legal costs (ask the CELA about that). Do not use your own money unless necessary, but keep records of where the money went. This disease can leave you broke, and that's one reason you need a CELA. He/she will also check your DPOA to make sure you have all of your bases covered.

Victoria always gives excellent advice. Read her post again, and take heed.

DotBern

Victoria, 

Very sound advice! Thank you. I am seeing Elder Care Atty today. I have your questions listed among others. I'll give you an update soon. 

DotBern

DotBern

Ed1937,

Thank you. I so appreciate the suggestions and just hearing me out. My aunt does not have the means to pay for AL or MC. She would be in a state run nursing home unfortunately. She makes just a little too much money to get on Medicaid, so Medicaid will take what she has left and then they pay for the rest. I'm starting to wonder if my cousin has been skimming her funds and now has to let Medicaid know where they went. I have no idea but he drags his feet for some reason. 

Thank you, 

DotBern

Quilting brings calm

I agree with everyone else here.   You need to disentangle your mom from your aunt.  That’s not to say that they couldn’t be in the same facility at some point.  It’s possible that your mom wouldn’t feel responsible  for her sister if  they were in separate rooms ( or or halls) and  staff took care of your aunt. Plus she wouldn’t be alone with her and feed off her delusions.  That’s for a later discussion though. 

First you need to get your mom in a safe place and get your aunt out of her home.  Your mom’s home may need to be sold to pay for your mom’s care.  It will be easier to sell and less disruptive to either of them  if it’s empty. 

Second, your cousin needs to take responsibility for his mother.  That isn’t going to happen as long as she is in your mom’s home.  You may very well have to have the lawyer deal with this. Otherwise he’s just going to let you deal with things.  You will find that this attitude goes on with siblings too. Often one is left to deal with the parent while the rest go on living their lives. Does it mess with family relationships?  You bet it does- but your mom’s safety and care have to be your priority. 

The fact that your mom thinks she is visiting in her own home should help when it’s time to move her.  She’s less likely to object is she thinks she’s moving into her own place.   I’d suggest an MC from the beginning if she can afford it.  Otherwise you may just have to move her from your home to one shortly anyway.  A room in an MC can still be presented as her own place with a staff to take care of every need

Edited to add- just now say your posts about your aunt’s financial status.  That will make it more difficult for your cousin, but you can’t let it be your priority. Lay this all out for your lawyer- maybe he can help 

DotBern

UPDATE:

Thanks to all who responded. It feels so good to have this forum, a place to vent, ask questions and seek support. I wanted to give an update on seeing the lawyer. He says my cousin MUST get DPOA ASAP, he offered to come to the house and get this done. It will allow my cousin much more authority to get my aunt into a long term care situation. Fingers crossed my cousin will agree. He's been sick with a virus so I'm waiting for him to feel better to have this discussion. The lawyer also stated that it is NOT that difficult to get someone on Medicaid if they need to be in long term care. I was enlightened and believe there is more to the story than my cousin communicates.

Once my aunt is being cared for, my mom will not want to stay alone and will hopefully make a decision to go to AL/MC or my home. I would absolutely make sure she is able to visit with her sister often. I am very worried about bringing her to live with me full time and the care that will be involved for possibly years. There is a small part of me that hopes she'll choose AL/MC facility but it's highly unlikely. She's from the generation of you take care of your own, no matter what. As an only child, it won't be easy especially if she continues with the denial. I agree with those that believe she could have agnosia. 

Fingers crossed we get this all settled in the next 4 weeks and keep mom safe. Happy Holidays to all of you. Thank you. 

[Deleted User]

The user and all related content has been deleted.

DotBern

Hi Victoria, 

You are absolutely correct about my mom. She no longer has good judgement and thinks I'm upending her whole world. I do tend to be a helicopter daughter. I try to help with things I know she is confused about. I'm beginning to think (in the 3 weeks I've been living here full time) that when she is frustrated or confused about something, anything I say or do is met with resistance and anger. I believe she is frustrated with herself and her inabilities yet needs to blame me for them. I have NEVER been anything but kind and patient when it isn't always easy. She is currently NOT speaking to me and wishes I would hurry and leave the house. Last night refused to eat dinner with us and my aunt. "I'll eat when I decide I want to eat". UGH. It's not a good situation. She seems to have 2 good days and 1 bad day in a rotation. The neurologist put her on Olanzapine to help with mood swings but no guarantee he stated. It's only been about 5 days and I don't see a change yet. Fingers crossed. 

My cousin is stepping up and finally communicated. He asked to meet with lawyer and his mom to get DPOA. The lawyer has agreed. Medicaid application is underway. He is in process of getting her cash value life insurance policy transfer of ownership to the funeral home in town so that Medicaid doesn't take it. Hopefully in a week or two he'll have that all settled. He has medical records to a LTC facility and will meet with her PCP to get "order to commit" for his mom. I feel terrible that my aunt will be placed in LTC but I have to deal with my mom now and I know it's NOT going to be easy. I've decided that a memory  care unit may be the best solution for my mom and for my family as her mood swings are leaving us on edge and walking on eggshells. I would never abandon her and she can well afford to move into an AL/MC facility and not a LTC nursing home. I LOVE the suggestions you provided about the heat going out or the paint still fresh etc. These are good suggestions. I have a hard time with fiblets (I'm a direct, no nonsense kind of person) but am quickly realizing that fiblets are a must. 

Thank you for caring and sharing. I can't tell you how much I appreciate the input. 

MN Chickadee

Fiblets are the way to go. Expecting her to agree with anything will make you crazy, her reasoning abilities are gone. If you are moving her to your home, tell her it's for the holidays or the winter months. Tell her the sister is doing the same, staying with her son for the winter and you don't want her to be alone in the house, you want to spend special time together at your place. Maybe wait for a weather event or something, tell her to come stay with you for a storm and it just keeps getting extended. If she is going to a memory care facility I would say it's rehab, or something the doctor ordered for that sore hip or to get stronger or whatever. A few more days and you may be cleared to go home. Always a few more days. Rinse and repeat. The mantra around here is the best statement or response is the one that brings the most comfort. That's all you can do for your PWD, they will never come to understand why things need to happen. If my mother asked if she could go home soon I'd say sure maybe next week. If she asked where her dead relatives were I said they were traveling and would be back soon. Do not ask her to participate in decision making, do not wait for her approval it will never come. Just make things happen behind the scenes. 

And think long and hard about where you move her. Taking her into your home will be a life changing, marriage changing kind of move. Night wakings, wandering, total incontinence, needing help with bathing and personal care eyes on her literally 24/7 are pretty par for the course so make sure you understand what you are taking on and make a plan to hire help. If you decide a facility is the way to go, make sure it is not just AL. Standard AL is not equipped to deal with dementia. The staffing ratio is lower and the activities will be geared to cognitively normal people, a standard AL will not have the structure and supports in place for a PWD to thrive. Some AL are memory care specific. Licensing is different in each state. Your attorney may have a handle on what places would be a good fit. Your local chapter of the Alz Assoc likely has a list of all places for you to start calling as well. 

As I state here often, adult daycare can be a good stop gap when you need to buy some time and/or you need to be able to do things in the house (such as pack for a move) without the PWD home. It gets the person in a safe environment and allows the family to do what they need to do. 

You have accomplished a great deal already and clearly will do what is needed to keep her safe and cared for.  Your mom is lucky to have you. 

DotBern

Hi MN Chickadee, 

Thank you for your input and suggestions. As much as I'd like my mom to live with me, I've decided it is likely best for her to go to a facility with assisted living that moves into memory care. I agree not all places are best suited. I spent some time today setting up appts for next week to go and check out a few places. I'm working on how I can get her into a place without a battle. You gave some great suggestions. Fiblets are becoming more and more necessary. 

She is becoming so delusional it's hard to watch. As soon as I say something she doesn't want to hear, she wants me to leave the house. Blaming me for her living here. She never asked to live in this town or house. It's only for the summer she agreed to be here. Totally delusional. She has lived here in the suburbs for 7 years after selling rental property in the city 5 years ago. I tried to explain about her memory not allowing her to remember and I was told, "don't start on that memory crap again. I don't want to hear it." Continues to rant that she can't believe I would sell those properties right out from under her and move her here. It's hard to take when I had nothing to do with the sale of her properties five years earlier. She did not want my help back then and fell into the hands of an investor that swooned her into selling her properties. She was paid handsomely for the properties but has no comprehension of the amount of money she has. 

It's so hurtful to see the look of hate on her face when she's angry at me. I'm her only child and we had a good relationship. I don't recognize who she is anymore. I know from others and reading many books this isn't uncommon but boy, oh boy, is it tough to live through. 

Thank you for your insight and for taking the time to respond. I'm grateful. Fingers crossed, this will pass and all will be settled in the next month. 

DotBern

UPDATE: 

It's been a couple of months since I reached out for help here on the forum. Thank you all for the support and helpful advice. In the past two months, much has been accomplished with more to come. My mom was moved into a MC facility, new to the area and has exceptional activities and dining and a roomy studio apt. I was able to get her set up and moved her in. My LO (mom) was not happy with me but was thrilled with the attention she was given when she arrived. After a week, my mom settled in and began speaking with me again. She is engaged, making new friends and is considered high functioning. I have peace of mind knowing she is cared for, her medications are given to her daily and she loves their food and the activities she engages in daily. She calls and tells me, "I haven't been home all day, I've been out since breakfast with my friends enjoying myself." I am so pleased. 

Of course, she believes she will only be there for the winter months and it is NOT HOME but will do for now. Her sister was moved to a state run nursing home and they visit with each other weekly. My aunt is doing OK. My cousin and I have found a better facility for her and are waiting on a bed to open to move her. All in all, I am pleased to have my mom happy, healthy and enjoying life once again. I can't say enough about the facility she is in. My husband and I were able to move into our new home with less stress. 

I am in the process of cleaning out my mom's home and having a hard time with it. I feel almost as if I'm violating my mom for some reason. Trying to decide what to keep in storage and what to discard or give away. I will be selling the house to a cousin who my mom always told she would sell it to. I think my mom still thinks she has another home in the "city" that she will be going to in the better weather. I say nothing for now and hope she will eventually "forget" that she wants to "go home" and will accept her new residence permanently. We are blessed to be able to afford private pay for mom.

Any advice on keeping her sentimental things, keeping her focused on staying at the new facility are welcome. She does have many pictures and favorite things at her studio apt. I just can't clutter it up with too much. I still find she moves things around constantly with no rhyme or reason. It's amazing how the mind works or should say doesn't work! She has asked to "stop by her house a couple of times" but I always find a way to avoid the stop. I think taking her to her old home while her things are being dismantled would be a huge mistake so I am avoiding it at all costs. My thought is when it's empty of her personal things, I can take her there if necessary. 

Thank you for all the insight and support this forum offers. It's been a great lifeline. 

M1

That's generally great news Dot.  But I would caution against taking too many sentimentally valuable things to MC--things disappear and get traded around frequently, there are some residents who cannot recognize personal property and will just take what they want in the moment.  The staff at our facility call them "shoppers."

The sentimental value is now for you and not likely for your mom any more.   I never expected that my partner would forget our farm and our animals (things with tremendous emotional heft), but she has--and I don't bring them up or show pictures, because it would just upset her.  But enjoy your own memories, for sure.

[Deleted User]

The user and all related content has been deleted.

DotBern

Hi M1, 

I agree about not bringing anything valuable. So far her things haven't disappeared as she is in a private room but I totally understand about shoppers. My aunt is in a nursing home and most of her things have disappeared unfortunately. 

You are right about the memories being mine and no longer hers. It still hurts but I'm beginning to understand exactly what you mean. I don't think I will ever take her back to her home regardless of it being empty or not. I think it could cause a meltdown. So I avoid the subject at all costs. She was reassessed this week since her arrival a month ago and the nurse shared with me that mom has not declined any further since arriving and continues to be a pleasant resident, well liked and appears very happy being involved in the day to day activities. I was delighted to hear this. She will be assessed in another 6 months and we'll take it from there. 

Thanks for responding to my post. All the best to you. 

DotBern

Hi Victoria, 

Nice to see you read my update. 

I agree and decided I will NOT take mom back to the house regardless of it being empty of personal items. I think it would be too confusing for her. 

I love the idea of taking pictures of some of the sentimental items. Great suggestion! I can't possibly take all she has nor do I want to. I'll take some things of course but most will be donated or distributed among the family. 

Thanks for responding to my post Victoria.