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15 years ago, my mom had a massive stroke at 60yrs old leaving her paralyzed on one side. After 9 months in rehab, she went home where my father has cared for her. An aide came in about 2 days a week. Fast-forward to 2024...she had another stroke in June, went to rehab and the plan was for her to go back home and my dad would care for her. After 3 days at home, my dad realized he could no longer do it. She's incontinent and can no longer help move herself in the bed, etc. My dad is 78 and she needs to have two people move her to change her, change sheets, bathe, etc. All of us decided it was best to move her to a SNF. However, 2 months into this my mom continues to cry, state she's signing herself out, says she was forced to go there, and states she wants to die. She doesn't want to wake up, and even stated that maybe she'd roll out of bed, hit her head and be dead. She said she will refuse going to the hospital due to any infection, dehydration, etc. She is on 2 types of meds for anxiety and depression, but we feel she needs a psych evaluation. The nursing home's communication is terrible, we've had issues with aides, called the police against one for abuse, etc. We don't know what to do anymore. They gave her a dose of Ativan, but said it can't be used for long-term. There are no other options locally to move her with "better care". All she wants is to go home, but my dad can't care for her anymore. Her needs are too high. We all feel terrible. We don't have the funds for private pay. I still work full-time and have a special needs child myself. Thoughts? Suggestions?? We feel is 100% depressed. This stroke was in the frontal lobe where all decision making occurs, emotions, etc. She used to be the MOST positive person and always felt someone else was worst off than her....that "mom" is now gone. :(

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They all say that. Just ignore it. Her situation cannot be changed, and there is nothing anyone can do aside from experimenting with different meds or finding a different facility.

If she’s a candidate for hospice ( in the facility NOT in the home!) consider that.
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cover9339 Sep 22, 2024
Lady in the facility would say that when the aides did not go to her room immediately. She was something else.
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I'm so sorry anyone has to go through this, just remember the mom you new and not the demented mom you have now. I'm also a very positive person, and would hate to put my family though this. So I'm wondering what do you think your mom would want? With that being said, I'm wondering if they have evaluated your mom for hospice, or if you asked them too.

All that really can be done is to try different meds to find one that helps.

Sending thoughts,👃, and best wishes.
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Beachlover74 Sep 22, 2024
Hospice? When you say evaluate her for that, could you explain? Thank you....
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Why would this be necessarily depression?
Would you want to continue to live in these circumstances?
Personally I would not. I feel that her feelings should be understood and respected. I would tell her "Mom I am so sorry. We understand you no longer wish to live. But this is not currently an option. We have to do the best we can. We know this hurts you, and it hurts us, as well".

While an anti-depressant try may help a bit, I feel your mother's feelings are rational and are being expressed. Your negating her honest feelings may be making her feel more and more despairing and desperate. This is a dreadful dreadful sentence to have to serve at the end of life, losing EVERYTHING you every had, everything you ever were. Here feelings are, imho, justified. I would have long ago done VSED (voluntarily stopping eating and drinking), and would have included my family in that decision.

I think it is time to get an MD to order a psychological or psychiatric consult and time to try and anti depressant. I have little hope that it will help, but I cannot think of anything else you can do now but allow your mother to mourn the fact she no longer has a life, but is forced to live this one.
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Beachlover74 Sep 22, 2024
Yes, I agree 1000%! I have told her that I respect how she feels and that I, personally, can't understand how she feels. I'm not in her situation. I cried last night as we were on the phone. It makes me so angry she's in this situation and sad that this is where she will take her last breath. It's awful. I guess I suggested depression because of the situation. She says she hates the way she feels. Thank you for your response. My dad and I said that a psych evaluation was needed, too.
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What can hospice do? I'd appreciate additional information....thanks!
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AlvaDeer Sep 22, 2024
I myself don't think Hospice appropriate here. She hasn't been given an end of life diagnosis in which her death is expected within six months.l
I WOULD go to palliative care.
That means that you are not treating toward "cure" and that you understand there is little now to "treat". It means you would not do things like have tube feedings go. You would not attempt to prolong her life. You would opt for comfort care. You recognize that she is not going to "get better" and that comfort and quality of life in so far as possible is now the goal.

You can easily find explanations of Hospice care, Palliative care online.
So sorry your Mom is suffering so. This is hard for her to bear, and for you and your father also.
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Hospice will do a few things. They will allow mom to be medicated for anxiety as needed, w/o worrying about addiction and all that nonsense, because she'll be having end of life care. At this stage of life, oftentimes the only thing that will help IS medication to keep a person comfortable and not stressed out, crying and miserable all the time. No more measures will be taken to prolong moms life, like trips to the ER where everyone waits around for a minimum of 4 hours of poking and prodding for no useful outcome. Hospice provides a hospital bed, supplies, meds, a CNA to bathe mom 2x a week, an RN to see her once a week, a chaplain and a social worker who all talk to her about her wishes. Medicare pays fully for hospice which is another layer of care for her. She'd need to be evaluated to qualify. Her doctor can write an order for a hospice evaluation at any time. A reevaluation is done every 6 months if mom is still alive to see if she still qualifies.

Having had a second stroke, mom may indeed qualify for hospice because strokes often lead to more strokes. It doesn't hurt to ask.

Good luck to you.
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Your mom has every right to be not only depressed but down right pissed off as well. You may need to talk to her doctors not only about a psych evaluation, but perhaps changing or adding to her antidepressants.
I would just continue to try and be upbeat when you all visit and call her and make sure that someone is visiting her on a regular basis to be able to keep an eye on her care there.
If your mom is truly that miserable then I do hope and pray that the Good Lord will take her Home sooner than later.
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I'm so sorry about how your mom feels. She reminds me of a lady at the facility who was somewhat similar. She would mention about dying, and yelling help with crying when she didn't get what she wanted when she wanted it.

She was/is similar in her moving as well. She had therapy to at least stand and/or walk, but she did nothing, so they discharged her from there (she was given 2 chances).

Eventually, she got her wish to leave, cried while waiting for them to take her to the other facility. didn't like it, wanted to come back, and was denied.

I can hear her now, yelling help,, crying and banging on her bedside table.
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Mom is depressed , angry and grieving . These are all a given with a debilitating stroke . With time and meds her mood may improve to a degree. However , it may not and you can’t fix that .

You are grieving as well .
When you visit , If allowed bring her foods she likes , that is safe according to her swallowing abilities, ask speech pathologist . Bring her flowers , offer to read to her , music she may want to listen to . If her mood improves , offer to bring photo albums she can look at .
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Very tough moments in life. My Dad was far too much for my Mum. We've had to place him in Residential Care. He isn't coping that well. We make a point of listening. But are quite firm about the amount of help he needs, and Mums right to not be a full time nurse with broken sleep and her own frailty.
I've asked for meds to be changed to help Dad's tears. Dr has done this.
Dad will bring what little talking he can do, back to himself. I am working at saying "we are talking about whatever, and not you for the moment.
I find bringing in flowers or an apricot crumble slice, seems to help. If I dress up a bit it helps me too.
Best wishes, but this last bit is really tough.
It's just awful.
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Moondancer Sep 30, 2024
Hugs to you. It is awful and one day at a time is about all that works and deep breaths also!
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It is natural for someone who is so unwell to talk about their own death. Wanting death to be quick and merciful is what we all want, and is very normal. Being there and reassuring her that it is will help with acceptance.

A good distraction is to begin conversations about what kind of legacy she wants to leave. Help her plan for what will happen after. She needs this.

A good book on it is Nothing to Fear: Demistifying Death by Julie McFadden.

Some good conversations can be started on what special things she wants you or others to have, to know, to remember.

Hope this helps!!
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I'm surprised the nursing home hasn't already suggested Hospice to you. My MIL has been in a nursing home for the past eight weeks and they approached us last week about bringing in Hospice. She was approved two days later. I was always under the impression you could only qualify if you were expected to die within six months, but that is not the case. The patient is reassessed every six months. It is true that she will no longer be able to go to the doctor or hospital for any emergency related to her "approval condition" which for my MIL is afib. If she were to get pneumonia (which is not associated with afib) she could go to the hospital, if needed, for treatment. You can discontinue Hospice at any time should your loved one want/need to go to the doctor or hospital and sign back up with Hospice afterward, without a waiting period. She can still receive PT/OT/ST if she wants it. An RN will come in once a week to check her status, a CNA will come in twice a week to bathe her (and that's in addition to the three baths the nursing home CNA's give her) and help her with anything else she may need, a social worker and chaplain will also visit her. We were also able to request a psychologist/counselor come in to help my MIL with her depression and anxiety. All of this is in addition to the care she is already receiving at the nursing home. If a situation should arise where my MIL becomes ill, gets hurt, etc, the nursing home will call Hospice to come in to treat her no matter what time of day or night it is. It was surprising and comforting when they told us the doctor overseeing her care was an internal doctor my husband was already seeing. Also, no medication is off-limit as it is with just the nursing home care team. I'm not implying they will drug/sedate her, but if she should need something stronger than an extra-strength Tylenol she will be able to get it. She is receiving more and better care than before. I would definitely look into Hospice as you can change Hospice providers or discontinue the service altogether, at any time if you are not happy with them. Do your research on the Hospice providers in your area - ask the nursing home who they are currently working with (it is usually more than one), and ask relatives, friends, etc for recommendations. Best wishes from another beach (and boat) lover.
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This is so sad to read. I hope that your mom finds peace soon. It is frightening and depressing for someone who had vitality and health one moment and the next moment find themselves dependent on others for care. With any illness, there are stages that a person will go through. Your mother is at a depressed state. Wanting to die is usually what they want when a person feels there is no quality of life left. Hospice is usually called in at this point.

It is hard on family to watch a loved one suffer.

My prayers and thoughts are with you.
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