I hung up on mom today

H1235 · June 2

I called mom to say hi and check in on her (she is in a nursing home). She started by telling me she has a list of things she wants from her house when I go there next. I let her rattle off the list of things she doesn’t need and made no comments about how ridiculous these items are. Thing’s quickly snowballed and she started complaining about me not taking her to her house. There are too many reasons to even get into here. She said she was sure my brother would take her, but he is afraid of making me mad. She complained that no one will even tell her why she can’t go to her house (I’ve learned my lesson there, she can not be reasoned with). Said I don’t let her make any decisions and have taken control of her entire life and it’s not right. A former roommate at the nursing home wanted to take her to lunch, the facility said she needed my permission. Since I don’t know this woman and mom is unsteady on her feet I said no. Mom asked a staff member why she couldn’t and they told her I had said no. She is pissed off. Again said I have no right to tell her what she can do. Six months before mom was diagnosed I started looking into independent living and foolishly included mom in the process. At diagnosis she was told she was not safe to live along, so that idea was out the window. Mom brought up that I was going to force her into independent living long before she had even seen the doctor. I made the mistake of pointing out that at that appointment the doctor said she was not safe to live alone. She said that wasn’t true. Said I had no right to control her life. There are things in her home that are private and none of my business. She was so angry. At this point I told her I loved her, but that I needed to hang up. She sarcastically says sure that’s the way to get out of explaining yourself. No one should ever have to go through this. I HATE DEMENTIA!!!

I am so thankful I have this outlet to vent.

SusanB-dil · June 2

You did what you had to.

If she continues to be severely angry, though, do tell her doc.

Agree. I HATE 'this'!!!! so. much. you vent. we understand.

Sunfish47 · June 2

I went thru similar with my mom. I think my moms behaviors and bad moods were the dementia and also exacerbated by her pain level (she endured the aches and pains of extreme arthritis in her late 80s, early 90s, that the pain meds only took the edge off for awhile). So I just tried to ignore her bad moods and nasty remarks. She was difficult.

pamu · June 2

It’s so hard. It sounds like you handled that awful situation very well. I’ve had to cut my visits short quite often. My mom is in the same boat as your mother. She wants to do all the things she did 20 years ago and is pissed that she is now in MC. She’s taken exit seeking to an extreme sport so even a visit upstairs to the library right now is off limits. Any thoughts of going anywhere or just going outside to the patio area is not allowed for the time being. The charge nurse was planning to have mom plant some flowers in the courtyard (she loves gardening) but she cannot right now because of her behaviors. She has no recollection when this happens so she can’t understand why we can’t take her out shopping or for an ice cream. My sister saw her for less than 10 minutes yesterday because she was very agitated and could not be redirected. I saw her today for about an hour and she was in a decent mood but she was telling outlandish stories and having delusions. Just when I start to feel guilty or second guess our “choices” for her, I’m quickly reminded about why she’s there. I’m glad you have this forum to vent…I don’t know what I’d do without it!

Quilting brings calm · June 2

You did what you had to for your own sanity. I wouldn’t call her for a few days either.

[Deleted User] · June 3

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H1235 · June 3

Thank you all for your kind words and understanding. I had planned to visit Friday, but I think I will hold off til Monday a give her a couple of days to cool down.

Victoriaredux · June 3

I just found this Teepa Snow podcast on communications, about 20 minutes , there is a transcript .

Covered recent topics that have appeared in this Forum- what an OT can do , when it is time to not live alone, visual triggers - like labels but mainly how to communicate.

https://adrc.wisc.edu/dementia-matters/caregiver-strategies-overcoming-communication-and-behavior-changes-due-dementia

easy23 · June 4

My DH is in a nursing home on hospice care. I visit almost every day. Eventually he starts talking about me getting him out of there to go to his apartment (which he doesn't have). The conversation devolves until I get to the point where I say I have to go to the bathroom and then I walk out and don't come back. I feel awful doing this, but it's what I have to do to survive. Hang in there! Your mother probably doesn't even remember your hanging up on her.

H1235 · June 4

https://alzconnected.org/discussion/comment/274030#Comment_274030

Mom has vascular dementia. Her memory is really not too bad. So unfortunately she remembers way too much. Sadly there are times I wish she could just forget. I wonder if it would be better if she didn’t remember who I was vs her remembering me and thinking I am mistreating her (it’s my fault all her freedoms have been taken away). Even when her memory is affected it that she has twisted past events in a way that makes me the villain. Dementia is cruel!

pamu · June 4

I received a text from my mom's nurse at MC yesterday telling me that she refused to meet with the psychiatrist and said she would go on a hunger strike until we take her out of there. She proceeded to eat her lunch (thankfully) but they are watching her closely. This morning the nurse said mom gave her a bag of clothes to throw away because I was "picking her up to leave today", told her she loved her and said she has to go get a dog (not sure where that idea came from other than the therapy dog visits to the MC). The psychiatrist seems to think that my sister and I trigger her exit seeking behavior - so we will cool off on our visits for a week. I hate not seeing her but I have daily contact with the nurse. I completely empathize with what you're going through.

jen ht · June 4

https://alzconnected.org/discussion/comment/273995#Comment_273995

I am thinking of you @H1235 I do hope you will feel able to hold off. I've found that my nervous system needs more recovery time after interactions like that. Hugs 💜 Jen

H1235 · June 19

The nursing home social worker called today and said mom is very depressed. I had hoped she was in a better mood if I wasn’t around to set her off. Thankfully they called to hear my explanation of things. Mom tells anyone that will listen that- I won’t take her to her house so she can decide where she wants things to go when she has passed, i won’t let her get things she actually needs from her house (hearing aids she doesn’t know how to use), she never gets out of the facility, she is angry I didn’t tell her my daughter had a stroke, when she moved in she brought her curling iron and a hairdryer nurses knew she had them but someone in charge just found out and said they were not allowed (I’m only surprised it took them so long), mom is very upset about this (at least this is not my fault), I won’t let her sew or bring her material to sew, I didn’t let someone I don’t know take her out of the building for lunch, and I won’t let her make any decisions for herself. The reality- I have been taking her to lunch almost once a week, she is a hoarder, it doesn’t matter how much stuff she has or I bring to her room in the nursing home she will always want more stuff, I have been trying to get rid of some stuff at her house with estate sale(she would go ballistic if she saw tables and things with prices), she wants to do things at her house she is not capable of (go up and down steps to basement and upstairs), her symptoms get worse when she is at her house because she is so overwhelmed, my daughters stroke was over a year ago I was barely holding it together and mom is a huge worrier(I thought it was best not to share with mom till I knew the outcome) she gave them the impression it had just happened, she is unsteady on her feet and needs to be pushed to use her cane when she goes out (I’m not sure if this fried of hers would insist she use her cane), she has extremely poor judgment, she doesn’t believe she belongs in a nursing home and thinks she would be just fine to live in her house. The social worker talked about trying to come up with a compromise between us. Like we are both rational people and she is trying to mediate. Grrr. But I do think they have a better understanding of things now. They had not considered increasing medication, I think because they figured they could just convince me how important it is for me to take her to her house and get her out of the facility more. After all mom tells a pretty compelling story. The social worker was going to talk with the counselor and the doctor to see if they could come up with any ideas and get back with me. On top of all of this I now feel like I need to inform my brother of what is happening (I avoid talking to him as much as possible). I’m pretty she he will blame me, that’s what he usually does. I think I need to do 2 doses of anxiety medication (doctor approved) til this is figured out. Have I mentioned how much I hate dementia!

Victoriaredux · June 19

Is this AL , MC or skilled nursing ? The social worker doesn't seem to understand dementia. If you are her active DPOA you call the shots . I'd start looking for a MC that understands the disease .

H1235 · June 19

I wish it was as simple as moving her to mc. Overall I believe the staff has very little understanding of dementia or hoarding either. Moms room could be absolutely packed with things from her house and she would still want more (this is what happened when she was in Al and my brother brought her whatever she wanted). Mom has no money and is on Medicaid. Even if I sold her very old and dilapidated house it would probably not pay for much more than a year of mc. Then I would be moving her to the nursing home anyway. Since all her stuff (hoard) is in her house that she had lived in for the past 60 years she would be very very upset if the house were sold. She would also demand that she needs to go through it to decide what to do with things (putting me right back to where I’m at now). My brother said he would tell her because keeping something like that from her would be wrong. I’m also trying to avoid too many moves. She started out at my brothers for a year (not a good situation), I moved her to Al where they told me they accepted Medicaid only to find they expect family to pay what Medicaid doesn’t cover (she was there one year), when her money was gone I moved her to the nursing home. We live in a rural area and nursing home choices are not good ( some were absolutely disgusting). As it is I chose a nursing home an hour away because it was the best I could find. There has been little to no communication from doctors. There is a patient portal, but it only shows nurses notes. I see nothing from doctors visits. I have asked about doctors notes, but I keep getting pushed off to someone else. No one seems to have an answer. This social worker said she would show me where to go on the site next time I come in. Maybe things will improve if I can get a better line of communication with her doctor,

pamu · June 19

Although it's good the staff is advocating for her, I completely understand the frustration. My mom's care team do their best. They did not change/increase her medications until a crisis happened (which stamped out the stigma to me that all nursing homes over drug their patients). In my opinion, if she was properly medicated she would not have had an episode. I was warned by the geriatric psychiatrist at the hospital that the nursing homes he works with are very hesitant to introduce/increase anti psychotics and only do so if there's a crisis. She was prescribed Seroquel at her last hospitalization and has since had the dose increased by the MC psychiatrist now that they have a better understanding of her needs. She has continual delusions but the staff sometimes have no idea that the stories she's telling them are false and quite frankly…completely nuts. I am in constant contact with the charge nurse by text and my visits - she then takes notes of my interactions with mom for the psychiatrist to review. That's all I can do…which I'd love to be able to take my mom out for lunch or for a walk outside by a nearby lake, but we can't because we fear it would end with her getting sent to the ER for not wanting to go back to the MC and having a meltdown. She has a history of this but she doesn't understand. She told me last week that she's mad that she's not allowed outside on her own…I told her that last time she tried to leave and ended up in the ER so the staff is being careful. She looked at me straight faced and said "You always think of the past". I'm probably a crappy daughter for saying this but there are times I wish she wasn't so mobile that we could do outings without worry of her eloping.

You know your mom best and if you bring her to her house make sure you have a plan in action in case things go south. Like your mom, mine talks about leaving every day so she can do things she can no longer do. It's so difficult to continually deflect the begging and complaining. If your brother is not involved in her day to day care and it's not an emergency there's probably no need to involve him in this if it's not going to help and cause you more stress. Hang in there…you're a good daughter!

Victoriaredux · June 19

If you are the DPOA and holder of the HCPOA you don't need to tell your brother since his approach isn't good for her stress level. And you have the right as HCPOA to get a copy of her medical file. The doctor's name should be on her Rx bottles, you can call their private practice office and request a call back.

Will Medicaid take the house when she passes to cover her nursing home bills? If so keeping it is a risk for you - that code enforcement demands repairs, a squatter moves in- where I am if a squatter is hurt they can sue - as if it's a hotel , old systems cause a fire or water damage.

Do you have building and especially the right liability coverage on it? If you don't want the contents or the house why not remove the issue from the table and sell all of it . It's not worth your energy , health or peace of mind babysitting a negative decaying asset .

Have an elder law attorney advise how to handle the proceeds to not mess up the medicaid coverage. Just think how great it would be to remove the albatross and "just" have to deal with overseeing your Mom's care.

pjasso · June 19

so sorry! I too have experienced similar with my mom. My mom lives in AL, not MC, but she is "not allowed" to leave the building without a family member. They legally can't stop her, but they would contact me. She has had temper tantrums when they have said she needs to stay but she has "abided" and never eloped. I asked the doctor to put into writing she is not to leave the building without family— both the AL and I have a copy, because she has asked "to show it to her in writing". When she blames me, I blame the doctor. She has accepted that now, but wow, it took some time.

I haven't had a "hang up" moment in awhile. If it starts to get heated, I say, "Oh, Mom, I have to go now" (someone is at the door or I have an appointment or . . . whatever". I try to say I'll call you later, Love you" and I have to hang up now.

But the emotions got me over and over for a long time. It took me a long time to finally get in my head this is the disease, not my mom. The trouble is, she has always had a temper, so it felt familiar.

Sigh ., . . grateful to this group.

H1235 · June 19

https://alzconnected.org/discussion/comment/275328#Comment_275328

I do have a dpoa, but still I have no control over what my brother tells mom, short of a restraining order which I am just not prepared to do and doubt I could get. I just talked with my brother and he seemed unconcerned. That’s way better that blaming me, so im taking it as a win. As far as the house, we have a ladybird deed. The house goes directly to my brother and i at her death (no Medicaid recovery). My brother and I are splitting utilities and we have special insurance because it’s unoccupied, but it is still a lot of work. If I were to sell it my brother would tell mom without hesitation, causing even more problems with mom. She lived in the house for 60 years. Her connection to the house is very very strong. I’m not keeping the house because of the inheritance(it is not even close to being worth the headache) I’m keeping it to try to avoid upsetting mom any more than she already is. I can’t even imagine how mad mom would be if my brother told her I had sold the house. The anger and depression she has now would be nothing compared to me selling her house. It’s an absolute nightmare.

Anonymousjpl123 · June 19

I will say that it sounds like you’re doing absolutely everything humanly possible to be sure she gets the best possible care in the nursing home. And that is truly - truly - what your mom needs.

I’m also glad your brother was reasonable. It does sound like social worker doesn’t understand dementia at all, but that being said, perhaps you can help educate her and at least get her to help your mom know that you are there, and caring, and hopefully she can just be a safe buffer. It does make me feel that you chose wisely because even a social worker that doesn’t understand dementia is way better than a facility that doesn’t show any care or engagement at all.

As for you? When my mom was in this phase, my visits happened when I was emotionally well enough to go: that was the policy. It saved my life. This is a marathon not a sprint and keeping yourself sane is as much for your mother as for you.

[Deleted User] · June 20

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H1235 · June 20

Thank you all for your support. As usual I can count on all of you to be there for me. Honestly thank you isn’t even enough. My kids are wrapped up in their own lives and even when I talk with my daughter telling her I am in tears and full of anxiety she just says I’m so sorry and then changes the subject to tell me about the boys getting new haircuts today. My husband listens, but doesn’t say much. Sometimes I can tell he is just sick of hearing about it. My brother is useless. You strangers put more effort in to helping me solve my problems with real well thought out advice and truly supporting me than my own family.

terei · June 20

Yes, your brother is useless. I would not tell him anything about what you are doing with her at all. He clearly has his own delusions/misconceptions about how to manage a PWD. It’s too bad you cant sell the house and get rid of that albatross on your back without your brother informing your mother and causing more conflict with her. From your descriptions, you are handling everything very well under very trying circumstances. It’s clear you are doing your best. Don’t let mom berate you, immediately say “oh someone’s at the door” and hang up, no response necessary from her.

I hung up on mom today

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