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.
Your Mom sounds too sick to be able to live at any time on her own. She needs 24 x 7 care and a facility is best able to do that. Maybe she can move to a smaller facility where the staff to patient ratio is a lot higher.
When my Mom went to MC, she was walking with a walker. They preferred to have her in a wheelchair since she was a fall risk and they couldn't be there all the time when she wanted to go from one place to another. In addition, it was easier (and faster) to move her from one place to another. After awhile, I didn't fight it anymore.
However, I did make her exercise nightly. She had a exercycle (the one with foot peals) which helped keep the edema at bay. (Toward the end, I do believe the Aleve that she was getting for her pain, was also the reason why she was retaining water in her legs) We also walked up and down the hallway. I would put up obstacles like a step up and step down, just to make the exercise a little harder.
So it is clear to me that she needs to be in managed care. It also sounds like you are not happy with the care they are giving her.
So, please investigate other MC facilities. Maybe you will find one that is more suitable for your Mom, and maybe all the rest are worse.
Unless you investigate, you won't really know all your options.
P.S. Don't bring her back into your home. The ugliness of dementia caregiving, is much worse in reality than it is on paper, especially the last 2 months.
She needs 24/7 care. It sounds like you are expecting her to do things for herself that she cannot do any longer.
Do what you need to do. If she cannot afford where she is now, make adjustments. Does the facility offer another level of care?
While we are certainly in different situations, I was prescribed Gabapentin ... and after reading the side effects, I couldn't toss it fast enough.
While she will not be happy in any situation - and may continue to deteriorate health wise, you need to do what she can afford and what you can manage.
And yes, she will be depressed. With time, she may adjust - or she may not. You cannot control her behavior. Just support her where she is, knowing you are doing the absolute best you can for her.
Be easy on yourself. You do the best you can in the moment. You make decisions that you BELIEVE are the BEST for your loved one. Then you find out and make adjustments. [I went through this when my friend-companion PLEADED WITH ME for weeks "I want to go home" ... between his VA psychiatrist (for years), the nursing home MD, and me (POA decider), we let him go home - after being in a nursing home for a year (the best in the county).
I was told that he could walk to the bathroom with assistance... otherwise, I would not have agreed to let him go home.
As soon as we got him home, he couldn't stand up at all and was bedridden. After spending (wasting lots of $ he couldn't afford - on too many hours of caregivers - which weren't even enough hours), he was back in another nursing home after two weeks. I had NEVER been so tired as I was during those two weeks - coming over 1-2 x a day ... doing meds, training new caregivers ... and that is after managing all his care for the prior 4-6 years. But, we all felt it was the humane thing to do - we tried. It just didn't work out.
Gena / Touch Matters
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.
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.
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.
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.
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.
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.
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.
That doesn’t have to happen in a nursing home. They want residents to be active as much as they are able.
It is not uncommon for a person to not like where they now live. Could you give your Mom more time to adjust to her new surroundings? Your Mom needs to get use to the new floorplan, the new faces of Staff and other residents, new sounds, new smells, new food, etc.
Could Mom's bedroom be set up like her previous one? We did that with my Dad and he appreciated it as whenever he would awake at night, he didn't become frighten thinking he was in a strange place. Give your Mom a couple months to adjust, even if it means paying more for her meals to be brought to her. Some don't like the noise and chatter of community dining rooms.
Have you even tasted bottled protein drinks? Read the ingredients, it's like drinking liquid plastic. When was the last time your Mom had a routine blood work, to see where she is lacking in vitamins due to her diet? As we age, we need Vitamin D (only if we are low in that vitamin).
If Hospice isn't possible, I would look into Long Term Care facilities that accepts Medicaid. It is much easier to admit as self pay then transition to Medicaid. During the application process your mom will be a Medicaid pending patient and can take 45 days to months depending on the States backlog. The assets and income will need to be assessed before the application can be submitted. That is best done with the help of an attorney that specializes in elder care and Medicaid Long Term Care process in the state the application is submitted.
Good luck and I wish peace for your family and mother. It is a difficult journey.
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.
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?