Impossible Mom

reeniem

Hello. I've been dealing with my mom for a few years now and am becoming desensitized and hopeless. I'll try and stick to the main details otherwise this will be a book. Background on mom: she'll be 87 in August. She had Lupus for years in the 70s and 80s but went into remission somewhere around the end of the 80's. Back then they didn't know anything about Lupus and gave her all the wrong drugs leading to her almost death and a bit of temporary crazyness. Because of this, she has never taken drugs of any type since remission and does not believe in Drs. Can't really blame her for that. She prides herself in being 86 and not taking even an asprin. That was need to know for the following reasons and some these reasons are also why I call her impossible. Also keep in mind she has never been officailly diagnosed because she hasn't seen a Dr. (except for bloodwork every year) in 40 years or so. I have self diagnosed by talking to the Alzheimers Ass ……. A LOT…… and telling them what's going on as well as reading about it and learning the symptoms. AA told me by the sound of it she's somewhere past the middle part of the middle stage. Add to this severe depression. She cries allllll the time. We are not allowed to talk about depression or dementia AT ALL! INSTANT FIGHT. I haven't gone there in years. Ask her, she's perfectly fine, I'm just against her. Absolutely NO Drs! for anything! She picks her face (although she says she doesn't) so she has a rash. Won't let me take her to a dermatologist……"They won't know what it is" she says. She has bad feet, they always hurt, can walk very little, limiting me to things I can try to get her to do, but she won't let me take her to a podiatrist or a special shoe store. " I did that already and it didn't help" ……no she didn't. She never wants to do anything but always complains that she is bored and lonely. I tell her I'm picking her up and she suddenly has diarhea…..every time. I give her a ton of magazines I spend a fortune on (I've stopped now) " I can't read them, it gives me a migrane".

Watch a movie with her all she does is talk about how stupid it is or how aweful a persons dress is, talks negative crap through the whole move until my teeth are clenched. There is literally NOTHING she doesn't have a reason to not do or not like. She used to live in as assisted living which she hated and was breaking the bank so I moved her a year ago into a beautiful 55 plus community. She liked it for a month and since complains about all the old people dying and all the ambulances that are always there, totally untrue, she still thinks shes at the assisted living. BTW she does well on her own still. She doesn't cook (I do) so we have no worries about the stove being left on. I also have cameras in there that she has forgotten about thank GOD so I can keep tabs on her. Unfortunalty these cameras are my source of I wish I didn't know info ie crying all day. I'm sure I'm forgetting all kids of other things but you get the jist. I'ts like she thinks she HAS to be unhappy, disagreable and miserable. SHE REFUSES TO DO ANYTHING TO HELP HERSELF OR LET ME HELP HER!!!! I'ts only my sister and I here to help her. She has a sister she talks to a few times a week but she lives far away and the rest of the family has written her off because "she's difficult". They are idiots, never liked them anyway. One last must know and I'ts a big one…… I am her enemy. I know she loves me, it's the disease. I've learned they often turn on the one closest to them and thats me. We used to be best friends. Now……..she's mean to me and I can do nothing right. She talks crap to my sister and my aunt about what a bitch I am and makes things up, says I did aweful things I did not do. Full on crazy stories and tells them so a person could almost believe them! Calls me names, if I try and help her with anything even something small ie her thermostat she keeps messing up and is either freezing or sweating I'm "a know it all". "Don't touch that thermostat this is my effing house". Her lease is up in October and she doesn't want to live there anymore. I'm "a bitch, you have that huge house and you won't let me live there". We lived together for 12 years and at the start of her dementia 4 years ago ( I didn't know that then) we weren't getting along so she wanted to move out. Thats where the assisted living came in. I am fighting stage 4 cancer and CAN NOT have the 24 hour stress. If I thought it would make things better she would be here now but nothing is going to make her happy so I opt to at least being able to have breathing space. Ok everyone….. I know that was a lot. I promise I'm not a long winded person usually but If anyone out there is dealing with anything similar and can send supportive information that long story was necessary. I Thank anyone who took the time to read it and am grateful for any helpful input. Btw…..I'm not going back to proof read for typos, I'm already exhausted from just writing this!

SDianeL

so sorry you are going through this with your Mom and fighting cancer too. First please learn all you can about dementia. Your Mom can no longer reason. Her reasoner is broken. She can’t make decisions anymore. It’s the disease, not her. She has agnosia (sp?) which means the inability to realize she has dementia. Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Do you have DPOA and HIPPA documents? If not you can’t make decisions on her behalf. Even with POAs you may not be able to force her to do anything. I would speak to an Elder Care Attorney for options. I would contact her doctor and explain the situation and see if they could get her in to the office. Make up a fib if you gave to. Some have used the fib that Medicare requires it. A diagnosis won’t help you however. There is no cure and other than anti psychotic medications for anxiety and depression there is nothing that can be done. An attorney may be your only option to get court ordered guardianship. Medicare doesn’t pay for memory care. Medicaid does but there are financial qualifications and those vary by state. Your Mom should no longer be left alone. She could be a victim of scammers, she could start a fire and wouldn't know what to do in an emergency or she could wander off. With dementia new behaviors can come at any time. Come here to this forum often for info and support. 💜

H1235

Welcome. The anosognosia is a much bigger problem them most people (who have never dealt with a person with dementia)realize. Not only does she not recognize her symptoms or limitations she is going to be insulted and mad that you would even suggest there is a problem. There will be no way to convince her. It’s time for work arounds or fibs. I know this may sound wrong, but come up with a story that will convince her to do what you need her to do. Do you have DPOA? If not you’re going to need guardianship. I’m not sure you can do much with out one of these. If you have guardianship or DPOA, I would decide what is best for her (assisted living, memory care, nursing home) and make it happen. She is not able to make rational well informed decisions and in my opinion should not be consulted. We want our loved ones to be safe and happy. Unfortunately with dementia we often have to settle for safe. From what you have said I don’t think she is going to be happy. It’s hard to accept (I know from experience). Some medication might help a bit, but assisted living is not going to force her to do anything (including seeing a doctor or taking medication she really needs). Maybe it’s time to consider memory care or a certified nursing facility. These places would probably be better at getting her the doctors care and medication she needs. She will hate it, but with proper medication she may be more calm and at ease overall. Medication does not have to turn someone into a zombie. You must also consider your limitations. Mentally and physically you can only do so much. I hope you can find a solution that works. I have attached a staging tool that might be helpful. It does give some information regarding care at each stage.

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

reeniem

https://alzconnected.org/discussion/comment/241736#Comment_241736

https://alzconnected.org/discussion/comment/241736#Comment_241736

Hello and thank you. No, I do not have DPOA or HIPPA. She fights me on everything, literally. She won't give me either and also will not let me help her sign up for Medicaid (she has Medicare), she says I'm trying to steal the last of her independence and if I bring it up again she'll never speak to me again. Someone said to call and see if Medicaid would work with me to sign her up without her, with the circumstances being as they are, but my hopes are not high for that. I have not made that call yet. I'm not even sure how Medicaid would be beneficial, I haven't researched it yet. I think they help with medical and nursing homes that Medicare doesn't??? She doesn't have any money and neither do I or my sister so if she moves she will unfortunately be coming back to live with me. My sister is immature and is not capable of handling mom regularly, I have to cheerlead her along every day already. I've never in my 63 years of life, not had a clue what to do until now……… and I have been through a lot. Btw….. we've been lying through our teeth for years now, figured that out a long time ago, anything to keep the peace. Another question…..my sister and I are killing ourselves trying to not let her get lonely. She says " I don't want to die alone" "I miss morning coffee with someone" "I miss goodnight hugs"……it really tears my heart apart. We go over as much as possible and I try and get her to my house for the day a couple times a week for dinner ( she was supposed to come today but of course the diarrhea I mentioned before occurred so we're off) but it's a lot for my sister and I. I really don't even know what my question is…….I guess I'm wondering if it's even necessary for us to kill ourselves trying at this point. Btw…….I have been in remission from my stage 4 colon cancer for over two years. I TRULEY believe GOD is giving me a reprieve because I'm the only one that can take care of my mom.

reeniem

HI. Is this site like Facebook where you will see all posts that occur from me or others if you have commented? Probably a stupid question, most likely is, but I ask because I want you to see my response to SDianeL, it's exactly what I would have said to you. The format of this site is new to me so want to make sure it's a mutual conversation with all involved going forward. I'm not that savvy….lol. Also, I couldn't open your link…..?

harshedbuzz

@reeniem Hi and welcome. I'm sorry you need to be here but glad you found this place. What you are living at the moment is not sustainable.

Your situation is a difficult one but it's not all that unusual. Since your mom is not cooperating in her care nor allowing you any input, you may need to file for either guardianship or conservatorship depending on your state. While this is more time consuming and expensive than a POA/DPOA, it's more doable in this situation.

My aunt and a friend were forced into this process having gotten guardianship in 3 different states. Some commonalities— in each case the judge did award guardianship on an emergency and then permanent basis. In each case, the PWD was ordered to undergo some testing around capacity and a physical to rule out other conditions that might be treatable. Costs were assigned to the PWD once the determination to award guardianship was made. For my aunt, other interested parties (siblings and nieces/nephew) were asked if the opposed the guardianship— we did not. In the other a friend and his brother worked together to get guardianship of their dad. In this case, dad was very like your mom in terms of difficult to help and also had considerable cognitive reserve which made him appear more with it to strangers. Dad, in this case, even hired his own lawyer to fight the petition but did not prevail.

It's likely that mom will be angered by this move, but her safety comes first. In the context of your fragile health and your sister's immaturity, it makes sense for you to be proactive by placing her via guardianship while you can. She's likely to be unhappy or even angered by this as she probably has anosognosia and can't appreciate the ways or degree to which she is impaired.

My own dad was livid when we moved him local to me and again when he needed to go to a MCF, but in a few weeks he'd settled in and was much calmer. There is no reason you couldn't visit there anytime you wanted once she's acclimated to the new place. There a risk she may still be unhappy, but her safety is more important.

HB

Quilting brings calm

@reeniem We all see every discussion heading. Once we click on a discussion heading, we see every comment in the order they were added. That means that you might think you are replying to a specific comment, but what you are actually doing is adding a comment at the bottom. So you might see three ‘ thank you’ comments because the poster thought they would show up under the comment they were replying to. It all works and we are all informal here. We aren’t as quick to respond as Facebook, but we also don’t have arguments like Facebook does.

There is a messaging capability but it’s separate from the discussions. Messaging only goes to whom you specify. Not everyone uses it.

H1235

https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

I tried it again maybe this time it will work better. If she meets the requirements (financial and physical need) Medicaid should cover a nursing home. A local commission on aging might be able to help with resources, information and just get you the phone numbers you need. I would not even consider bringing her to live with you. Without medication it would be way to much. It’s hard to imagine our loved one needing nursing home care especially when issues are more mental than physical. I would file for guardianship NOW! You can only do so much and trying to make her happy is probably not something you’re going to be able to do. In fact, her safety mental and physical should be the number one priority.

reeniem

Link opened. mom is stage 4. This just got very real and very terrifying with no money/medicaid to set her up to be cared for properly. If you knew me you'd know I don't overwhelm easily but thats where I'm at in this moment…..overwhelmed, terrified and mourning my mom. I have to take a time out, stop crying, regroup and get with GOD. He and you all are all I have right now so thank you for all your input…..whether I like it or not, I appreciate it. I will be back tomorrow.

reeniem

Hi Everyone. Feel better today. Process the reality and came back strong. Thank you again for all your valuable input. I'm going to start moving forward and making a plan which makes me feel a little more in control. I'm also going to join an in person group, I think that is a must. I'm sure I'll be back with more questions!! 😊