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Hello All:


My Mom went into a hospice facility yesterday, under Active Care, for congestive heart failure and dementia. I had called her doc the day before to let him know of her current health challenges and me feeling like I'm going to collapse taking care of her. (She has lived with my husband and me for 13 years. She developed the dementia with hallucinations a year ago.)


She is now begging me to get her out of there. I know I no longer have the energy and stamina to wait on her all day and not sleep when the hallucinations start at night.


Am I wrong to reconsider and bring her back home again and ask the memory doc to sedate her enough to be more manageable. It's the guilt setting back in because she doesn't like the food, the bed is hard, etc. I am finding it difficult to leave her in hospice while I try to get healthy and well again. What's better for her, being a zombie on meds and coming back to me or torturing her with an environment that is making her so unhappy?


I do feel I need to have a healthy life again but I am struggling with making it at her expense. She is 92 1/2. I am 64.

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If sedating her so she will become more manageable, that can be ordered at the hospice facility. Keep her there. She may 'graduate' out of hospice with good care and improvement. So allow her to have this extra care, and re-assess this at a later time, maybe 6 months from now.
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If she's on hospice they shouldn't be "torturing" her... its all about treating her pain and keeping her comfortable.

Do not bring her back home, just tell her she can come back when she gets better. No, that will never happen, but telling someone with dementia the truth will get you nowhere.

13 is a long time. You've more than done your duty.
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It is so hard to take care of someone 24 hours and it affects your health. You need to take care of yourself in order to look out for her.Perhaps she can be with you at least friday and saturday since most elderly would love to spend there days at home. we will be praying for you and your family.
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MAYDAY Jun 2020
you cannot do that with older people with dementia. they will not understand, thinking that they are going home, not just for a weekend, but forever. It's difficult now, for us, to put ourselves in their shoes. Me, I had to just rip her out of her home and place her. No wonder I feel guilty. still feeling guilty. it is such a hard subject matter to wrap my brain around. there is no right solution. JUST DO NOT FEEL GUILTY... that's all i can say. i found her the house she was supposed to live in. then i ripped her out of her home that she adored and loved with her animals. I witnessed one by one, her pets die. one vacine related? seems like it. one gotold, too weak. the oldest one, " mom h=i have to find him before I leave, he's outside somewhere. got him,called hubby to bring a box :( He drove this cat in his truck until the vets opened up the next working day. it's not fun or a good feeling. guilt just rips at me every time i visit.. i tell her i am so sorry..
my other brother and i are the only ones left of our immediate family..and I had to call him 7 times before he decided he should see her before she passes. Then again, it;s my fault for not telling someone directly,,, HAY YOU.. MOM IS NOT GOING TO LAST THE WEEKEND.. YOU THINK YOU CAN COME DOWN FOR A DAY AND SAY GOODBYE? How do you honestly say that to your mom's first child? I was the baby...

Sorry: i was just told 3 hours ago I go off on tangents that mean nothing to anyone.... so here I go. do not take mom out of a memory care or nursing care for just a jot for the day for her to glance at her home she used to live in. It is mean and cruel, unless you honestly are going to move her back in with caretakers, hospice, palliative care, and you , and the rest of anybody you may know,, I almost did that. My brother living at that time, said no,it would be too much.. Here he dies before here with early onset dementia. WOW.. Take it from my beautiful brother... He was a hero more than most know... that's another story for another time. So many parts ofhis life, he really did save people. He was never afraid//// !!! WEll, never around me. He as always happy to see happy people... that as one of assets. I was told by my older sibling I have symptoms like my younger brother, somE brain may be messed up up... YOU, he was happy. If I get to that point of being happy... then I will be OKAY :)

YUP ;;; SAVE YOURSELF;;;DO NOT ALLOW MOM TO VISIT HER OLD PLACE UNLESS YOU ARE PREPARED FOR IT.. anguish and all.
I had a cousin took his mom, and placed her. she thought it was same home...


Thaink about it and ask very close relatives what they think.
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JUST: DO NOT FEEL GUILTY... it lasts way too long and very hard to release that.

I am down that road, and it's been a couple years now since mom passed, and I still revisit that part of my brain. I always feel guilty.. I could have done something better or different, but now, does it really matter?... :(

NO GUILT.. you are doing the best you can
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I’m sure you have had a long talk with yourself when you decided to send her out.
my mother is also 93 years old. She exhibits dementia, takes no medication except multivitamins, and Melatonin for sleep. She toilets herself but need personal care assistance in bathing and reminding her to eat and drink.

I’m also reminding myself to draw lines when time comes. I’m on my 70’s, so I can guess what you must be feeling.
I hope you ask yourself who would take care of you and your mom if you bring back your mom. God Bless.
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Do NOT take her back!!!!!! Unless you want to die before her? You made right decision. Don’t blow it & make Biggest mistake of your life & take her back home!!!
Hugs 🤗
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First of all, let me say how very sorry I am that you are going through this. I was in a very similar situation last summer with my dad. The only difference was he had been in a skilled nursing home for a little over four years. However, prior to that, I was taking care of both of my parents in their home while also maintaining my home and taking care of my husband, who has been diagnosed with Fronto-Temporal dementia in 2012. My dad never wanted to go into a nursing home but had no other alternative when he kept accidentally injuring himself at home and not letting anyone know he was injured. He developed a severe infection which turned into sepsis, was admitted into the hospital and I had him transferred to the nursing home for rehab a week later. My family and I then made arrangements with my parent's elder care attorney to keep him permanently at the home after he completed his rehab. He was not happy and was, for the most part, always trying his best to get back home. He particularly blamed me. We ended up in court as the nursing home wanted to discharge him as he was 'his own person' passing all the 15 questions that he was in his right mind therefore my POA were not in effect. I had to obtain a court order to have my dad deemed incapable of making medical decisions in order for my POA to be inacted. This was done with my dad getting a neuropsychological exam which determined he had dementia. Then the nursing home would have to legally acknowledge me as my dad's POA and dad could not be discharged. All this took nine months during which the attorney notified the nursing home that they had to keep my dad there until the legal process was over. My dad was livid and became increasingly angry towards me making it more difficult for me to visit. In August of 2019, my dad was placed on hospice in the nursing home. I had the option, as his POA, of transferring him to a hospice facility but I chose to keep him at the nursing home and use their hospice as dad knew those caregivers. I managed to visit him just a few times during his last year to minimize the stress on both of us. I also took my mom to visit over the course of dad's stay at the nursing home since she was afraid of my dad the last few years. My dad passed away September of 2019 at the age of 96. There were many times over his four year stay and during hospice that I felt bad for my dad and the whole situation which is totally normal. But I did my best which was to keep my dad safe and protected. Dementia makes the person not see what is happening and so it is up to those of us who do see what's going on to make those hard decisions. I am not saying it's easy to make those decisions because it's definitely not! We have to give ourselves permission to make those decisions for our loved ones in their best interest, as well as, our own and so we can live with those decisions and move forward in our lives. If you don't keep beating yourself up, the guilt will eat you up and you won't be able to move on in your own life. You are doing the right thing for the right reasons. Please give yourself a break, take care of yourself so you can be there for the rest of your family. I wish you well in this journey.
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Ladybug518 Jun 2020
Thank you so much for writing. I’m sorry you had to go through all that.
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For others, the trick is to start talking about going to a new place well before the move is made when it becomes obvious this is in the person's best interest. Maybe even a visit is called for. After my sister-in-law had a minor stroke and was the in loco person for my mother and I lived on the other coast, my mother decided living alone was not in her best interest and asked me to find a place for her, which we did. When we got to the retirement home/al/nursing home, I went to the Social Worker with concerns for my mother. The Social Worker said not to worry, that "daughter's have the right to their lives too." This profound statement still resonates with me. Always consult with the social worker at the facility -- they have been there many times and can take an objective view.
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Ladybug:. You CANNOT nor SHOULD NOT bring her back home. Thirteen years is monumental caregiving. She is there for a reason at the hospice facility.
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MAYDAY Jun 2020
lady bug, listin to the llama.. she is right. It would be cruel and unjust. "teasing her in a sense.... SHE WILL BE ACTUALLY FINE IN THIS FACLITY. IT NEEDS TO BE HER. LET HER FEE;L IT WAS HER IDEA. bring music, dance, her favorite food, make aparty out of it.HAVE FUN WITH IT.... DANCE DANCE DANCE !!!! What would havppen if you can get 3 men and 3 women to join you , dance with her and roommmates. turn up the music, bring IN n Out milks shakes with Ensure mixed in it,....git workers out, bring out the joy and fun!!!

decoriate her room pretty. host parties inher room.. Peope who can only use arms will have fun too....maybe ballooons... all that maters :: VISIT
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You did the best thing for her. Don’t second guess yourself. After years of caring for my mother - I developed cancer and some auto-immune diseases from the stress of caretaking. It was solely my responsibility to help and entertain my mother 7 days a week and the stress finally got to me about 5 yrs into my caretaking. She is 94 yrs old now, and still in her home, but I had to draw up boundaries while I did chemo and immuno-therapy. I had to stop my daily caring for her and hired someone to do things around the house and a volunteer from hospice visits her once a week. (Hospice had been a big help up until corona). When she gets worse with her chf, I will make the decision to send her to our lovely hospice facility to live out her days with wonderful care. You made a great decision. Give it time. It’s new for you both. She’s with good care now, which is what she needs.
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I had to do the same type of thing just recently. Between my mom's health and my health I just wasn't able to take care of her like I had in the past. She is 94 and I am 69. Yes she still wants to come home but I know that the best care for her is there at the assisted living facility. The best I try to do is to talk to her everyday at the same time and also encourage her as much as possible. I talked about the others that are there with her that she is meeting. Try to get her talking about things that have happened to her in the past. A lot of times I just feel she want someone to talk to. Often I give her scripture verses and pray with her. That seems to be very helpful. She will always be wanting to come home but I know that it is just not feasible, especially at this time when it is hard to get help on a extended basis. please don't take on the guilt. You have gone far and above what many others would be willing to do. God bless you!
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It takes time for every dementia patient to get used to a new environment. Almost every dementia patient gets to a point where it is hard to have them at home - unless you have helpers 24/7 round the clock. My father-in-law got his days and nights mixed up and my mother-in-law's health suffered as she tried to care for him all by herself.

Don't feel guilty. If you could manage her behaviors at home, you wouldn't have put her into hospice - correct?
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Ladybug518 Jun 2020
You are so right!! I could not manage anymore and I was desperate for help. Thank you for your observations. Spot on.
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I told my mom that she had to stay in NH until she got better. I also told her that her room (at my house where she lived) was still the same, nothing has been changed or moved. It’s always there for her. I didn’t throw anything out. (All true). This has been going on for 1 1/2 years.

It allows her to think that she has options.
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You can have a mattress topper delivered to her to help with bed issue. If she was accepted into hospice I would think they felt she belonged there. I am your age. My mother is in AL under quarantine which I feel bad about especially as my grandchildren are making an annual visit. I will do what I can to have her visit them virtually. The reality is I can't change the rules of a pandemic. You need to care for yourself. Aging can be very sad but there is only so much we can do at times. Obviously having your mother in your home understandably became overwhelming. I think you need to accept this new reality. You have certainly done a great deal for a very long time and I imagine your mother had complaints in your home. I suppose as best you can explain that this must be the new reality since there is indeed a pandemic.
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I think that you need to take care of yourself. It boils down to can you safely care for her and meet her needs while balancing your own! I'm not certain that her physician would be willing to sedate her to the degree you desire. Do you think it is in her best interest to l8ve out her final days unaware? What you are seeing is that she is going through a period of adjustment and she may need some time for things to settle down. Additionally, moving her back and forth will just aggravate her dementia. Stay the course. Take care of you so you can be more present for her. Remind yourself that you did your best and now it is time for the hospice staff to help you both. Maybe you'd want to speak with the hospice social worker or chaplain for additional support.
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the most important thing to deal with is that you must take care of yourself - You can't help others if you don't. Second, remember that Hospice is really not a place, but rather a service to help those who have a prognosis of 6 months or less [altho this can and frequently is adjustable, depending on the particular case. You can talk with the various Hospice staff -nurse, Social Worker, Chaplin, Doctor and usually can have a volunteer as well. They can help you see that you are doing what you can for your mother and need not feel guilty because you need to address your own situation, They can also help any questions that you have. The primary focus of Hospice is to make sure that your mother has as little pain as possible. Most people adjust to their new moving situation in time - but also remember that change is hard for most people and the older they are the more difficult it is to adapt. TAKE CARE OF YOURSELF AND YOUR FAMILY FIRST. You certainly seem to be doing what you can for your mother. Maybe see a counselor or talk with your church rep [i you have one],
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Since your mother has only been in the hospice facility for one day, I suggest you attempt to get her to agree to giving it a try. I also suggest that you be lovingly honest with her about your own need to regain your health. My mother, suffering from congestive heart failure also, spent the last 4 months of her life in a hospice care facility. While it was, indeed, an especially beautiful facility, she told me prior to her death that when she first came to the facility, she thought that it would be a sad place, but, during her stay, she came to see it as a wonderful, good place. In my mother's case, the facility kept residents occupied with visits from church choirs, hand massage therapists, therapy dogs, a harpist, regular volunteer visits, the cookie lady every afternoon around 4:00pm, etc. A local hair stylist donated his day every Wednesday and would style the hair of those who wished to and were capable of having their hair styled. Some days when I came to visit Mom after work, she would say how busy she had been all day and that she didn't know where the time had gone. If you mother's facility offers some activities, she may, with time, grow to like it better, and enjoy all of the attention she is receiving. My mother actually "blossomed" in the hospice facility because the socialization surpassed what we could provide at home. Just some thoughts from my experience. Best of luck to you!
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Your mother likely won’t be happy if you bring her home. I mean think about it.....what was she like before she went in to a hospice facility? I am sure she had a plethora of complaints. I am you ran yourself in to the ground trying to keep her happy right? Why do you think there will be an improvement if you bring her home? If you were on the brink of collapse before, you will collapse if you bring her home. Do you know how much work is involved even if she is zombied out? Someone has to administer meds, turn her every 2 hours if not more, change her depends and the bedding regularly.
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You are in a tough spot. Can you try a different hospice? What ever you do will be right. Good luck.
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You already have spelled out your needs. That is primary.
All the complaints from your mother is normal...there is no place like home. The Dr. has to adjust meds to "I do not care" and not make her a zomby. If she has or wants God's help there is the chaplain. I know God deals with anxiety as in my practice as a volunteer chaplain I have seen Him Work. Anxiety can come with what she is dying from. Meds work on that. God Works on Spiritual anxiety. God also works on your anxiety if you want, or you can take something that will take off the "edge". It is great you have a "connect" with your mother. You will not lose what you and your mother had as long as you live. You will "adjust" to the "now" and when she is gone you adjust. Your grief or loss also lasts for your life time and Hospice has that service for you now and when she is gone.
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Dear Ladybug,
So many people have been and will be in your position. For some elders it takes a little time to adjust. Fortunately for me my mother chose to be in a facility. She had the companionship of others her age and status. She had some days of regret, but overall she had some days of improvement and happiness. The staff were caring and she was able to have "her space". So often I have seen others ask to go "home" but found out it was not the earthly home but the eternal one. May you and your husband be blessed with your time together.
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Dear Ladybug,
I applaud your selflessness and dedication to your mother. Having her in a hospice facility where she's well taken care of is a gift to her, as now she can get the advanced care she needs, whether she realizes it or not.
Once the staff gets your mom stabilized, I would encourage you and your husband to take a few days away to re-connect. After 34 years of children and caregiving, you two deserve a getaway (even if it's a weekend nearby) and it could do wonders for your mental health and your relationship.
You are, and will continue to be, a blessing to your mom by having her in a safe, caring environment. All the best to you.
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Ladybug518 Jun 2020
What a beautiful response to my situation! I will remember that I have been a blessing to her, as she has been to me. Thank you.
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I am so sorry ladybug that youre having problems.

it’s a reminder to me to remind my daughter why i want to live in a hopefully good facility someday. She wants us to live with her but i say no and hope i dont hurt her feelings. But she doesnt know that she may be getting herself into the same situation you’re in.

i think your mom would feel the same if she were aware of what’s going on.

i hope that makes sense.
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RedVanAnnie Jun 2020
What a nice thought to think Ladybug's mom would feel the same way you do if she were more aware.
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It sounds like your mother has reached the stage when she needs more care than you can do at home. Can you take some food she likes when you visit? Arranging for a better bed sounds like a good idea, too, if the facility permit it.
Your mother needs to be where is staff to take care of her. You have been wonderful to have taken her in for so many years. Now you'll need to accept your limitations and stick to boundaries that preserve your own health.
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Be realistic about what you can do. Her may progressively get worse. Ask the doctors in her facility if they can do things to reduce her anxiety. Also, perhaps you can get her a better bed. Hospice pays for hospital-type beds, and if the bed is too hard, it may case bed sores, so this could even become a medical issue. There are medical mattresses that also do a gentle massage for people who stay in bed most of the time. My mother has one in her hospice. See if you can get other things for her in hospice that will make her more comfortable and less stressed.
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You must do what's best for you now. Your mother is coming to the end of her life and if you don't look after yourself she will be ending yours too!!!! Please don't be so hard on yourself. Older people can be very unaware of others needs and only think of themselves. She is in a safe place where she will be looked after so now it's time to do what you need and have a much deserved break and enjoy the rest your life. I would give anything for a break from having my mum live with me but it doesn't look likely for a very long time. Take care and don't feel any guilt.
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News flash!! What you were hearing from your mother is no different than what most of us have heard from our parents when they go into a facility. They hate it, they want to move, they hate the food etc. etc. I would not move her back to your home. you now have her where she can get the care she needs and you can get the rest you need. Why do you feel guilty? That’s what you need to ask yourself. Do you really think bringing her home is going to solve anything? Your needs are also important. Your mother’s needs are being met at a hospice facility where she can get the kind of care she needs and you can just be her daughter. I would strongly urge you to reconsider not bringing her home. Lose the guilt!
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I think your mom would rather be home and sedated where she feels safe and loved.

Maybe you could find a Day place she could go to so you would have your days free or maybe Hospice could just come to your home for visits and helping out with bathing a couple times a week.

Maybe you could spend some of your mom's SS and hire a Caregiver for a few hours a day.

Specially now at this time with the Virus, I think she should be brought home.

She probably won't be living thst long anyway.

And in the end you'll be happy and feel better after she passes and you'll have No Regrets.

But you do need to get some help so you can get better
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Someone who qualifies for a hospice facility is too far gone for adult day care. And I think it’s pretty rotten to completely disregard the OP and post this kind of guilt-trippy advice. The OP said she is on the brink of collapse from taking care of her mother. Bringing her mother home is not the solution unless the OP wants her mother to outlive her.
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Don't bring her home. Giving a person meds to make her "manageable" is highly questionable practice anyway - so bringing her home would be bad for your mother and terrible for you.

But your choice is not between a) bring her home and zonk her out or b) leave her there and make her wretched. Stop thinking of it in those terms! - it's guilt alone that makes you look at it so.

The goal is to maximise your mother's remaining quality of life and provide her with optimum care. You're far likelier to achieve that with the staff, equipment and expertise available in hospice. Work with the hospice facility to iron out the problems and settle your mother in comfortably.

I strongly recommend that you don't take your mother's calls for a few days. Make a pretty sign for her saying "Ladybug is away 'til Thursday" (or whatever excuse will make most sense to her) and ask someone to pin it up where she can see it. Then stay in touch daily with the hospice team ONLY to answer any questions or give constructive advice. They can't take the same care of your mother as you did when they've only had charge of her for a couple of days, but they will be doing their best.
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Your mom will adjust...mine did..Took 8 weeks but she is so much better cared for than I could do..and I feel better..mom 86, me 69. I am in counseling. We are NOT responsible for our parents happiness. We are responsible to give them a safe comfortable well cared for place to be..that advise has helped me greatly. Good luck....no guilt here..
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tanbuck Jun 2020
Great advice!
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