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We moved my mom to AL last week. I know it’s an adjustment but I fear we have made a mistake due to her deteriorating health and financial limitations.I don’t want to discount what my mom is feeling but it’s hard not to see discrepancies in how she is coping with her health conditions that are unresolvable pain, edema, depression, and anxiety. If we push her she manages but if left on her own she will barely do the basics of showering and making a cup of coffee. She is capable for the time being but she hasn’t the will. Last night we dined with her and she started vomiting in the dining room from hiatal hernia. There was no way she could run to the ladies room. This has really shaken me and now I’m fearful of leaving her alone to eat. This is heartbreaking.
One week in AL she has deteriorated so much I think she needs to be in a nursing home. She is non stop stressing how much pain she is in and how afraid she is of falling. Every health issue has escalated to a point that she will be in a wheelchair within a week or two.
We have been actively helping her to walk down to dinner but she always has the excuse of pain to avoid the dining room or activities. I know she is suffering on many levels and have no idea how to help improve this situation. She wants meals delivered and that is an extra $1000 a month!
She has just enough finances to stay in AL if she doesn’t need an aide to bring her to meals or need to move to memory care. At this rate it seems inevitable her care level is rapidly escalating and we are going to run short of funds.
How is this going to play out? What should I be doing that I’m not? Should I move her to a nursing home where she’ll just sit in bed for the rest of her life? She has no ability or motivation to help herself but I completely understand. She is dealing with way too much! She has Trygeminal Neuralgia and sick from Gabapentin, she had her legs stripped ages ago and her lymphedema is causing nerve damage in her feet, and because she can only eat soup she is carrying at least 25 pounds of water weight in each leg! She is malnourished because she only wants to eat ice cream, cake, pudding and soup; she refuses to drink protein drinks; she can’t manage a hearing aid which adds to her cognitive difficulties, and from the improper diet she has chronic inflammation causing body pain. It’s a vicious cycle of trying to help her and she unable to do what’s needed.
Is it wise to just let the money run out and then go to a nursing home or cut our losses and move her to a nursing home? My siblings and I can’t care for her due to dealing with Parkinson’s, stage 4 cancer and more cancer!
Thanks for reading though I fear I didn’t express clearly all that’s plaguing us.

I am surprised the AL even excepted her. Did they not evaluate her care? Your Mom needs more care than an AL can give her. She needs Longterm care. Find a nice facility that takes Medicaid and use her money to pay her care there. Yes, its more expensive but by paying privately, it will be easier to get her in and when the money is almost gone, you apply for Medicaid.
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Reply to JoAnn29
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AL is for ppl who only need limited help, like distributing their meds, doing household chores, laundry and so on.

IMO your mother needs mush much more care than that, a NH should be the option selected.

Start the wheels in motion for her benefit.

Sending support your way.
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Reply to MeDolly
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I watched both of my parents with differing medical conditions lose their will to be here any longer. Though it was so very hard for me, it was also understandable. When the issues keep piling up, as well as the losses of abilities and loved ones, why wouldn’t anyone lose their joy for life? And please know my mother spent four years in a nursing home, completely unable to do anything, yet she was gotten out of bed, dressed, and taken to activities daily. Nursing home doesn’t mean lying in bed unless the resident refuses all help. Assisted living doesn’t sound appropriate for your mom, if you don’t move her, I’d expect the staff to ask that she be moved at some point not too far off. You cannot fix her situation, as much as you’d like to, it’s simply the ravages of illness and age. Stop trying, and give yourself the gift of acceptance. Reassure her of your love, hold her hand, be her advocate, and care for yourself in all this. I wish you both peace
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Reply to Daughterof1930
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I am so grateful for the kind responses to my post. Each one has helped me to relax and know that this decision we made might not work out and it’s not a mistake but how things progress and it’s not easy to watch.
I need to learn about Medicaid and get prepared.
We are planning to speak with the nurse and doctor. I think my mom needs an assessment by her geriatric doctor to help us make these decisions.
I know it takes time to adjust but there seems to be more going on medically because she seems like she’s about to lose her mobility.

Thank you and bless you for taking the time to help.
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Reply to NJmrsTi
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You know, at some point, for many seniors, the will to go on DOES leave. They would rather be done with their vale of tears and rather be gone. Failure to thrive is very common to seniors, more common than people understand.

My own father lost his will to live, and that was in his early 90s with really no illness to speak of. He lost any will to eat as well. He said he was ready for the last long nap and he was exhausted with life, and that despite acknowledging he had had a wonderful life. There was no depression; this was simply how he felt. Some of our best talks were with him in bed and me sitting on the bed just chatting really honestly with him.

I don't know WHAT you can do at this point. When the funds do run out then your mom will be in the nursing home you mentioned on Medicaid. When finally your mom is allowed to pass I hope you will experience the relief I felt for my own parents, that their losses were over, that what was a torture to go through and a torment to witness was done with.

You can discuss all this with the doctor. I don't know he/she will have an answer. Medications can be tried; as to whether they will work or their side effects be worth it? That is another question.

I wish I had better news. I wish you all well.
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Reply to AlvaDeer
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PDLncga1 Oct 13, 2024
I agree. Will to leave comes to most patients. How do we as caregivers, with a lot of love for patients just allow the “will to die” to take over?

Shouldn’t I encourage eating? Even bringing in outside food? Hiding vitamins and other good stuff in food?
Shouldn't I make him get up? Try to walk?

I am aware of loosing the will to live. I just don’t know how to let it happen as a loving family member?
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She needs medical care in a nursing home. AL is for people who just need the minimal, safe place to live. They dispense medication. Take her to her PCP or a geriatric physician, yes they are out there. Have her evaluated and they will also do a cursory dementia check and adjust meds.
Tell her that you want to figure out what is going on and get her support for a "medical investigation" I told my mother I care about her, we need to find out what everyone can do to help. AND be aware that she may need time. Give her a timeline, a week is NOT long enough. And MEET with nurse on staff, and everyone else at the facility that is front line care. They are the experts, with caveat in there. By starting with the "Lets find out what is wrong" angle.
Be aware that guilt can contribute to making decisions based on the heart, realize that like caring for your own children, you are now the parent to your parent and that is a difficult road to travel.
Hang in there. and there is no right or wrong..just different ways of this road.
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Reply to dogwithav
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On the protein shake, nurses told us to freeze it and maybe mix it with some ice cream when my mom wouldn't drink them. That worked. She just ate it like it was ice cream.
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Reply to Charliana
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With the health issues and concerns you have listed you may want to consider having your mom assessed for palliative and/or hospice care.
It is difficult to accept that she may be transitioning to her next live step. However, having had my mom in palliative then transferred to hospice with progressive congestive heart failure and other related health issues was the best option for us.
Not only did these programs bring her peace of mind and well-being but these teams were available to the family to talk and answer questions and aid us as mom's condition became more diminished.
Palliative and hospice care isn't for the final week of one's life but rather is an aid beginning early enough to prepare all with the final transition.
Contact your mother's PCP or the speak with the director of nursing at her AL for more assistance on how to have your mom assessed.
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Reply to christinex2ri
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elisny Oct 12, 2024
I concur. Palliative care or hospice sounds necessary.

Her mom is clearly miserable and ready to pass on. Many people get to that stage. There is nothing wrong with it. Elders should be allowed to die when they are ready.
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It does sound as if your mother would be better cared for in a nursing home. She sounds very frail with a lot of care needs.

Don't feel that you are giving up, when you eventually make this decision. You have to ensure that her needs are met, and I doubt that AL can.

I wouldn't worry about your mum's poor diet - and that isn't causing fluid retention in her legs, as that's caused by poor circulation and no exercise. At least your mum is eating something.

Whatever you do, avoid paying out for your mum's care from your own pocket. One day you will need that money for yourself in your old age. Apply for every bit of help and funding you can, on your mum's behalf.
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Reply to MiaMoor
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NJmrs, I see that you updated your post a few days ago and that you were preparing to speak with administration and your mom’s doctor. I hope you were able to do that and to discuss other options.

I understand your concern as my DH’s family was in this same situation with his mother. When it was clear that she could not continue at home a beautiful facility with many services and activities was chosen for her by her well-meaning children and she was moved into a bright studio apartment. The poor woman refused to leave her room without one of her children escorting her. She would not use her call button. She would not set foot on the elevator to go downstairs to the dining room. She would not speak with other residents or the staff. She seemed petrified. It soon became obvious this situation was not going to work for her.

The children withdrew her from the facility and found a small, 5 resident, private care home for her. It was not bright or beautiful nor did it have social activities or on-site services but she was clean, well fed and kept appropriately medicated and comfortable until she passed.
Her health and mental state did deteriorate quickly after the move but who is to say it would not have happened anyway? She did seem less stressed and fearful in this cocoon-like setting and that counts for a lot.
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Reply to Peasuep
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