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My mom is 57 years old and her colon burst last December, she went septic. She had a colostomy bag for 6 months. She has been on dialysis since January and has been in a nursing home. She will have to remain on dialysis for the rest of her life. She was starting to do better until she had her surgery to put her bowels back together a couple months ago. It's been downhill since then and the doctors can't figure out why, her labs are normal (for her). She wants to sleep 24/7, she is extremely difficult to wake up. She is completely incontinent now. She refuses dialysis or comes off her dialysis early almost every session. She has been in and out of the hospital 3 times just since her most recent surgery to reattach everything. I feel like she is spiraling and is miserable every single day, especially since Covid means I can barely visit her. Her nurses and doctors and I keep asking her if she wants to give up, each time she FIRMLY states she wants to live. She always has an excuse as to why she can't do this or that- she had to come off dialysis early yesterday because she was anxious (she is given xanax before every session in order to aid with this). Last week, she refused a session because she wanted to eat first (she took an hour to eat one cheese sandwich). She has been evaluated by psych and they say she is just depressed. She fully understands what happens when she misses dialysis, yet she still misses it and insists she wants to live. I am not sure what to do. POA would be a battle because she has clear days where she is fine! As of now, she is still her own POA. The nursing home staff says she is hospice appropriate, but she refuses to even talk to anyone with hospice. How in the world do I handle a situation like this???

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Confused, it's been a while since you wrote. How is your Mom doing at present? Thinking of you.
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Reply to AlvaDeer
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Yes she’s depressed and she won’t be able to make any decisions or do anything until that is resolved.
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Reply to Donwin
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Confused 96 suggestion maybe you need to sit down with mother alone and asked her what she really wants out of life. And listen to her since she is calling the shots and she is coherent maybe she will listen to what you might have to say. Then you love so mother let me talk there’s a group here from Hospice Care & Palliative Care . Let her know that nowadays hospice has changed completely it’s not just for the dead or the people that’s getting ready to die they are there to help her. There’s extra attention that the regular nurses can’t give at that time they come and visit her and talk to her 2 to 3 times out the week they are sister with whatever she may need. She probably is taking hospice is a death call, so that’s why she’s not excepting to speak to anybody from hospice. If mother can still re-read as hospice to give you a pamphlet of their up-to-date services and let mother read this might assist you & her A great deal since she qualifies for this assistance. My mother had this Care since November 11, 2019 until passing August 20,2020 . I truly appreciate their services.
I 🤔 think she needs convincing, let’s try it see how this can assist you.
Do you have any POA Medical , or does mother still in-charge of her own decisions. Mother is miss attention and this might be her way of receiving it .
possible she requires activities, new reading books, word search . Does nursing home have arts craft, bingo, ect . To assist. Converse with Social Worker they are full of suggestions and assistance with anything . They are your go between. What you need to do is pull back your visitation for a week . Don’t go every other day try one day out week .
Let her breath , you will be the one whom feeling bad . Pull yourself by bootstraps.
you will see the change . If you need to know how she During just call the unit .
it might take couple of weeks . One visit week. Then third week twice week not back to back . Suggestions only .
i found out it works .
Is the Phyco. Saying she’s depress from what ,have they conversed with here. Don’t let them prescribe any anti-drugs to her. They need to find why depress , once medication on hard to stop. Medication alter brain chemistry and causes another problem .
She refusing treatment because???
Have they informed her its to help her.
you might need to converse with an Elder Law , you not even an advocate for her.
She is calling her Medical Condition situation, how did she get in Nursing Home to begin with. PCD stayed she couldn’t live alone anymore,it took two Official Medical Doctors to approve her in Medically Unstable, need Professional Medical .
Long as she incharge of her decision, and Deny treatment , they can’t force her, they tell her it’s t help her , yet she’s continue to tell them no, they try encourage her, yet she doesn’t what to do it . They just record it in her records denied treatment today . You can’t even ask to see Medical Records because she making all her decisions.
You need to try let go for that week one day visitation only .Don’t argue with her telling her what to do, you will see the difference. Stay calm , speak calm a whole different change . It’s her decision, it might not be yours see the change .
God Bless
Respectfully
Brown Sugar signing off
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Reply to Brownsugar1956
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"They always want you to go with hospice or palliative care. My Mom would be dead right now several times if I did what they recommended.
I fought for her, and I have her at home with care.
If you don’t want to lose your Mom at such a young age, you need to fight and advocate for her."

THIS IS BY FAR THE VERY BEST RESPONSE I HAVE READ. YOU NAILED IT.
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haileybug Sep 6, 2020
Sorry. Meant reply to C1john.
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Your Mom is not going to get the mental health it sounds like she needs in a nursing home.
She is depressed and who wouldn’t be? I’m 60 and I can’t imagine. Depressed people aren’t logical. I can’t believe they aren’t addressing the depression. I would think she would fight for her life if she wasn’t depressed. To me, that needs to be addressed first which means therapy.
They always want you to go with hospice or palliative care. My Mom would be dead right now several times if I did what they recommended.
I fought for her, and I have her at home with care.
If you don’t want to lose your Mom at such a young age, you need to fight and advocate for her.
Can you get her to her primary physician who knows her? Or call them and tell them what’s going on?
It gets tricky when they are in a nursing home because they have their own house doctor etc. but I can assure you they won’t fight for her.
And with her being depressed, it’s going to be up to her family to fight for her until she can get her fight back.
Maybe that isn’t possible. Obviously, I don’t know her but you do. If you could get her home with care, that would be best. But that’s takes money and time. That also might not be possible for you. I just hate for you to lose your Mom at such a young age.
Its really terrible that they just release people from the hospital to a nursing home without treating the whole patient.
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Reply to C1john
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Age 57 is very young for your mother to be wanting to die, or to be acting against her own health interests. Is her age on your post correct ?– or is 57 your own age, not hers? As well as depression, the refusal to comply with difficult health regimes is sometimes linked to other issues – alcohol or drug dependence, even smoking, that the person doesn’t want to have controlled. If you have done your best and it is true that she will not behave in her own best interests, you may just need to accept the situation.
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Reply to MargaretMcKen
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I would think that she refuses to talk to anyone about hospice because she thinks it means she will die soon. At 57, she's probably not ready to give up yet, but she sure isn't getting the treatment she needs medically, due to her stubbornness and non-cooperation.

"Just depressed" is a pretty significant comment from the psych staff; did they have any suggestions? As a person who was clinically depressed at one time in my life, I am well aware that anti-depressant pills can be very helpful, but talk therapy is needed as well. There is no magic pill that will "cure" a person's depression. The right medication can, however, lift one's spirits enough so that they might be willing and able to talk about what's happening in their life and to work towards some solutions. Perhaps you could meet with the psych staff for some guidance here.

You posted your question hoping to find a way to handle this. Sometimes gratitude and acceptance is the best we can do. You can be grateful that you had (hopefully) many good years with a loving mom, and that she's in a place where she's getting good care. You can try to accept that this is how she wants things to be, even if it goes against her recovery. It seems that she wants the treatments she wants and nothing else; perhaps she wants to sleep so much of the time to escape her reality. In her situation, I'd want to sleep too.

It is so hard to watch someone go downhill, mostly because of her own actions. We all wish you the very best as you go through this very sad situation with your mom. Be sure to take care of yourself in the meantime, and this means "Don't feel guilty!" You're certainly doing the best you can.
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My mom was older when she acted similarly. She broke her back, became incontinent, wore a catheter, was wheelchair bound and had tons of pain. She’d refuse food, repeatedly became dehydrated and lost lots of weight weakening her. I was sympathetic with no improvement, got angry and said I didn’t intend to hang around and watch her die day by day. This didn’t help either; we both were hurt and frustrated. My mom was opting out in the only way she could. She was a Christian and didn’t believe in suicide. She’d do only enough to exist, but became bedridden which caused pressure sores, too. Mom told me there’s a point where the indignities one endures, the constant pain and daily struggles are simply too much to bear. My family believes that we return to full light after we leave this world. Mom ate and drank but did so quickly which ultimately caused aspiration pneumonia. She passed 4 days later, but she left this world on her terms with dignity and surrounded by family and love. Before she died she thanked us for being supportive and not fighting her every step of the way. I now believe there is a point where a person should be able to choose how to go forward or not. Your dilemma is so difficult, my heart goes out to you.
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Reply to DadsGurl
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Imho, her specialists need to continue to review her health STAT.
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Reply to Llamalover47
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You are in a very difficult position. You want to help your mother and you want her to do her best, but since she is competent, there isn't a whole lot you can do. Be as supportive as you can with her.

Our mother has dementia and has been in MC for over 3.5 years now. She just had what is likely a TIA yesterday. She refused transport to the hospital, so they called me. I told them to take her for testing IF they can get her to agree (even with dementia, they can't take her if she refuses!), but no hospitalization. I also said I would like to talk about this with YB, which I did and he agreed. In mom's case, she just turned 97, has little or no hearing, was being treated for Mac Deg (I cancelled the next appt in Oct and future ones - too much for her now!), refusing to stand/walk without major assistance for months now, and high BP (long time, takes meds.) At this point, I see no benefit to testing and do not think she would do well being in a hospital. Could they give her meds to try to ward off future TIAs or a stroke? Sure, but to what purpose?

I fully expected something like this to happen long before now. She is overweight, med records show enlarged heart (not recent!) and with high BP and no activity (her choice - they've tried to keep her active!), it would happen sooner or later. Last real visits, she was living about 40+ years ago. Other than reading (over and over) and esp sales flyers, she has little to no life at this point. It would, in some way, be a blessing if she could go in her sleep!

Your mother isn't nearly as old, but if she continues to refuse some or all treatments, it is her choice. There isn't a lot you can do other than be supportive. Working with staff, perhaps they could get her evaluated better to fine tune the medication(s) for depression and anxiety. Not all meds work with all people. If what she is taking isn't helping, something else might work better. Otherwise, sympathies to you. Do not feel like you are failing her and certainly don't hang on to any guilt. These are her decisions.
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Reply to disgustedtoo
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This poor soul's heart is broken and her body is broken. She has all the signs of deep depression where she wants her final peace but she doesn't want to admit that to you or scare you or upset you so she tells you she wants to live. But in reality, she does not want to live. This woman will not get better and it is hell to live like this. Love her and support her but don't force her to live if she does not want to. And why talk with her about Hospice - get a Power of Attorney and set it up and move her there.
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disgustedtoo Sep 5, 2020
You can't just "get" a POA.

A POA must be GRANTED by the person, and given what we have been told, it doesn't sound like this woman would grant anything.

Since the mother is still competent, guardianship is out of the question as well. The courts won't likely grant that when someone is considered competent.
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Instead of focusing on how "long" mom wants to live, try asking her about what she would like her life to look and feel like. It may be that all her medical issues, COVID precautions, and having to stay in a facility.... is about having too much to cope with. That would explain the depression. Additionally, living on dialysis is really difficult. The patient (my reference since I am an RN) always feels bad: either drained of energy after dialysis, or irritable as toxins accumulate, or off with all the restrictions to their diet, or off because they can't do all the things they used to do. Focus on what she CAN do and WANTS to do. If dialysis and food/fluid restrictions are not what she wants anymore, then hospice would be a better route and allow her to live whatever time she has with more control and pleasure.
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Beatty Sep 6, 2020
"Focus on what she CAN do and WANTS to do".

Your reply is refreshing. Like opening a door into a totally different place, into a garden instead of grey walls.

Quality of life over quantity is something really worthwhile to think about.
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A POA doesn’t give you control over your mother as long as she is competent to make informed decisions. It comes into play when she is unconscious or deemed medically unfit.

My mother had a fall and hip replacement and was out of commission for several weeks. She paid all the bills and finances for my parents after Dad's stroke. It took us a week to find out where she had hid her checkbook!

After that I convinced them to appoint a POA so someone else had access to to pay bills. It doesn't have to be a family member. An attorney or accountant can be appointed.

Also, a Medical POA is needed to make medical decisions, make sure you discuss your mom's wishes, write it down, and send copies to all relatives who might feel they have a right to n opinion on the topic.
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Destiny54 Sep 5, 2020
A financial POA does in fact allow the person designated to make financial decisions on someone's behalf even if they're not unconscious or medically unfit. It's best to have an elder law attorney to assist with using the correct form.
And, the POA needs to be signed BEFORE someone is unconscious or unfit. Otherwise it's too late and a guardianship will be needed and guardianship are expensive and difficult to obtain.
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Maybe start with a conversation about how difficult it was to wake her up and let her know that you could make decisions for her if they simply couldn't get her awake. Tell her that someone who doesn't know her will be making the decision if she doesn't sign the papers.

If you cannot get the forms signed and she continues to decline care, let her know that her medical care might end up being totally out of your hands should she not be able to tell them what she wants.

"just depressed" seems to simplify her situation. She is depressed. Have they given her any meds to help with the depression. Have you had anyone else in the family ask her about how she wants her health handled? Maybe it's just hard for her to have the discussion with you.
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Your mom sounds very depressed. It would be good to get a psychiatrist involved and hopefully find the right medication to help with depression. Don't be discouraged if the first med doesn't work - often it is trial and error to find the right med.

In the meantime, for your peace of mind realize that you can lead a horse to water but you cannot make her drink - you can drown her trying, but you cannot make her drink! Your mom has to make decisions for herself, and frustrating as it may be for you, you have to accept that you cannot force her to make the same (right) decisions you would make. When you ask her if she wants to live, she may just be giving the answer she thinks is the right one, or she may be answering honestly but not know how to dig her way out of depression. Either way, you can only do the best you can and accept that she is making poor decisions, but they are hers.

Is there anything that will help her want to keep living? For my mother her will to live comes in sharing time with her great grandsons. Maybe if you can find something that sparks her, she will take better care of herself. However, if she is very depressed even that may not work.

Know that you are doing the best you can, and maybe talk to someone yourself so that you have support in accepting what is happening. Hospice and/or palliative care often offer help to family members
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Reply to anrean
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It's her life so sge can do as she pleases.

But pills aren't going to fix her depression.

She will be depressed and probably will die within 6 months in a Care Center if she can't have family visit. Prayers.

The best scenario would be for her to live with you and having her dialis done in your home.
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Shane1124 Sep 6, 2020
Pills won’t “fix” her depression but in my opinion at this juncture antidepressants should be at least tried.
There have been great strides in producing better antidepressants providing more options than were in the past.
These medications do work imo. No doubt this poor woman’s entire life changed in 10 months. I would probably be depressed as well.

But with time may come acceptance of her own health conditions and she may improve. Every option should be explored.

If mom refuses that’s her prerogative.
Daughter please don’t feel guilty about it either; you are doing the best that you can under the circumstances.

It’s up to mom to make decisions with her health but I would support her and discuss her care with her physicians & at least try an antidepressant.

For the daughter to take her home and provide dialysis is way too much for the daughter. We’re talking needles, blood and infectious waste in the daughters home. I don’t even think at this point mother is stable on dialysis & needs staff supervision. It wouldn’t be safe to dialyze her at home. Someone needs to be present the entire dialysis treatment.

It will take a huge commitment by the daughter to assume the responsibility of putting her mom on dialysis, monitoring her throughout and then taking her off the machine. It would quickly cause CG burnout. It is not for everyone and takes months of training. Daughter should not take on that responsibility.
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This sounds so difficult. All the best to you! Try to convince and help her get her paperwork in order so that she designates a POA for medical and financial affairs, has a living will that states her medical directives, a will, etc. Some banks have their own POA forms. Things will be much more difficult without a POA if she becomes incapacitated, which can happen if she is refusing dialysis. Would she talk to a therapist or religious counselor about her depression and anxieties? Has the psychiatrist prescribed medications to help her depression? Some therapists and religious counselors might come to her bedside for sessions if she can't go to them.
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My husband did not have the other physical problems that your mother does, but he also did not go to all of his sessions of dialysis. There were times that he only went once a week and sometimes missed two weeks. There were times, his body hurt too badly to sit in the chair for 4 hours and not be able to move. Or his bowels were acting up and he couldn't get unhooked quickly enough to make it to the bathroom. Or it was snowing, or he just didn't feel like it. But he was still making water, so it was not as critical, although it really was. He ended up on dialysis after heart surgery and two months in ICU.

This also meant that he was let go from work after a year. He was on dialysis for 5 years. He was very depressed and on medication, although no one ever changed or updated it. He had plans to stop dialysis this past January after we reached our 50th anniversary, but he passed away in November from unrelated issues. But when asked by palliative care, he wanted to live until our anniversary but did not want to continue dialysis. So it's a mixed bag of emotions.

One thing that stood out in your comments is that your mother gets her Xanax right before dialysis. My husband was always told not to take his meds, all 8 of his morning ones, prior to dialysis as they would be cleaned out during the procedure. His dialysis started at 6 a.m. so that might have been the reason also. Up until the last 6 months of his life, I was still working and he took himself to dialysis and I know that I was not always, if seldom, given all or the correct information.


Although we had talked to hospice 3 years prior and because the kidneys did not cause his death, I don't remember what exactly we discussed, but it may be that dialysis is not given once one is placed on hospice. My husband always wanted me to tell him when it was time to stop and I always told him that it was not my decision. I didn't have to live with the severe pain of his arthritis, crushed discs, inability to walk very far (he would not use the scooter), and the isolation of not working. But I supported whatever decision he would make.

When he was hospitalized with intestinal hemorrhaging, I did make the decision that he would have no surgery. Luckily he had the same doctor at the hospital who had treated him through the aftermath of the heart surgery and agreed with me. We had talked enough for me to know that he wanted no surgeries. My husband also made a Durable DNR over 4 years ago.

I empathize with you and understand how unsettling and stressful this can be. My husband's timeline and bucket list kept changing over the course of several years and I eventually decided that I couldn't do anything about it and we would face the end when he finally made a decision. In the end, I made the decision.

I know that this was lengthy and probably of no help to you, but it has helped me. I wish you peace and a strong heart. It is a tough decision for your mother to make, especially being so young.
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Tenacity Sep 6, 2020
You never know how sharing your story might help another person.

I see some similarities in our respective experiences with our husbands. Especially the part about the bucket list. We still have things we'd like to do, but I know deep down that we never will. The hardest part is that my husband will never get to see his brother again who lives abroad.

So, thank you for sharing. It really touched my heart.
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What a horrible situation for you and your mom. So many serious health issues in a short time and she is young. Who would not be depressed? I agree with the suggestion below about getting a psych eval. Is there anything to entertain her while on dialysis? From what I have heard its a difficult treatment. She absolutely needs a living will. She probably needs something for depression and anxiety.
I have to wonder if she is giving up but is afraid to say. Is a therapist available for her to talk with?
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Reply to InFamilyService
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I agree...she probably wants to live, but she will have to make the decisions on her own, unless you get her to sign a living will..
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my dad does this to me...but he says he wants to die, then he changes his mind! He's not in a nursing home and is still driving! He can fall asleep sitting up and he does this a lot. If she's in a home, maybe you can talk to a patient advocate.
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Has the psychiatrist told YOU that she is “just depressed”? Have you asked the medical specialist if there are specific medications that might be tried to balance out her mood?

My mother would sleep as long as 24-30 HOURS when given a very small dose of Xanax. Have you asked for a trial of some other medication?

The Covid complication is TERRIBLE. Could you get in touch with whoever handles her psychiatric medication by phone?
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Why is she 57 in a nursing home? What am I missing? Just asking.

That in itself is enough to be depressing for her. js
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haileybug Sep 5, 2020
No, I am not responding to myself. This is on my heart and has me thinking a lot. Blessings to your mom.

Being in a Nursing Home at such a young age and dialysis on top of it can be very depressing for her. A lot of people don't understand the severity of it.

Have you ever heard how bad "stress" is to your health? It is a silent killer.

Just curious if she really has to be in a nursing home? If not, it could be a start in helping her if she could go elsewhere. No harm meant here .

You and your mom are thought of.
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"They say that it is just depression." JUST depression? Depression is debilitating. She needs some treatment for it. Xanax here and there won't do it. After I had a kidney removed following 3 long surgeries, turned out it was the anesthetic that caused a reactive depression. Worst, blackest time of my life. Your poor Mom needs some care and a lot of understanding. She's been through a lot! All the best to you too, because living with someone who has depression is also very difficult.
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haileybug Sep 5, 2020
Exactly … Depression will wear a person down. It is awful.
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Maybe try Prozac. It helped my 71 year old brother. Xanax may not be right for her. Also compliment her when you can. Often they have very poor self esteem.
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InFamilyService Sep 5, 2020
Prozac can be very good and effective for depression. My daughter took it short term for an extreme case of post partum depression. Worked wonders.
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Xanax is kind of a "downer" drug. It could be contributing to the depression; however if she has both depression and anxiety, it is difficult to assess as she is between the devil and the deep blue sea.
This depression, and all of this, would not be abnormal. What did the psyc crew suggest to address the depression?
She is making her own decisions and it does sound as though every effort is being made to suggest things that might help. Other than to wish you good luck I can't imagine a way out of this spiral. She has been through so much.
Mom will have to make her own decisions now; you will have to allow her to do so.
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Confused96 Sep 2, 2020
She gets a very low dose of the Xanax, and she only gets it on her dialysis days right before she goes. As far as the depression, they just try to keep her talking and encourage her to try to call family more. Instead she just wants to sleep. :( They don't want to put her on too much medication as dialysis already is not pulling off as much toxins as they would like to see.
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You did what you could, It's up to her now.
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Isthisrealyreal Sep 2, 2020
Exactly
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