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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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One day is not enough time for her to adjust. Not saying she will entirely. They always want to go home. But Mom will get the care she needs there. You are aware you can't do it anymore. That's OK. Let others care for her now. She will be kept comfortable. It is what she and you need.
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Ladybug518 Jun 2020
You are absolutely right. We need this. I need to LIVE now. Thank you!
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You've already given her 13 years of your life to care for her, so please don't beat yourself up about wanting/needing to care for yourself now. Sounds like she's where she needs to be right now and you need to do what's best for you and your husband. She hasn't been there long enough to really know whether or not she likes it. Sounds like she just knows what buttons to push with you in hopes that you'll cave in and take her home. Give her time to adjust and yourself too. And if she's able to understand at all with her dementia, explain to her that you just can't take care of her any more like the folks at the facility can. It honestly sounds like you won't be happy either way, having a "zombie" mom at home or a unhappy mom at the hospice facility. I guess you must decide which is the lesser of 2 evils. Don't rush to any decisions right now. Give it time.
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Ladybug518 Jun 2020
Even if she doesn't like it there, I have come to realize as the day wore on, that I need to take care of myself. I have not done so until this point. And my husband and I just calculated that between our kids and my mom, THIS IS THE FIRST TIME WE ARE ALONE IN 34 YEARS!! Ahhhh....
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I'm so sorry you are going through such an ordeal; you surely do not deserve this guilt trip after devoting 13 years of your life to caregiving. You are no longer in the position to care for your mother who has too many issues and needs more help than you are capable of providing her with. Period. I am sorry mother, but my health is in jeopardy now and I am under doctor's orders to stop the care giving role.

You are not making this decision 'at your mother's expense.' You are making a decision based on the reality of the situation which calls for more care than you can provide her.

My mother is 93 and living in a Memory Care ALF (in care since 2014) and lately, she keeps mentioning how she has 'her bags packed' and how she's 'ready to leave' because there's 'nothing wrong with her' and the same goes for her friend Carolyn. They 'don't belong' there. Well, mother, I cannot even GET YOU up the stairs INTO my house since you are wheelchair bound, plus you have entirely too many issues for me to handle at home; I simply am not qualified. That is what I tell her every time she brings the subject up.

And lately, I find myself cutting down the time I spend with her on the phone due to the guilt trip she feels the need to lay on me. I don't deserve it. I will be 63 next month and have enough health issues of my OWN to deal with, never mind taking HER in! Not. Gonna. Happen.

You've done enough, my friend. Let your mother adjust to her new environment and pick ONE time each day to check in with her by phone. That's plenty.

Good luck!
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Ladybug518 Jun 2020
Thank you! I do feel I've have gone above and beyond to care for her a long, long time. Since I do love and respect her so much (pre-dementia), it made me so sad about this decision, to see and hear about her unhappiness. I spoke to a therapist this morning and a social worker at hospice. I feel much better now and know I did everything I could and I have to take care of myself now.
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Ladybug518, it took me several years to realize that my parents [in their 90's and still living in their house] were viewing me like I was still in my 20's and 30's with a ton of energy. Well, that ship had sailed decades ago.

I had to learn to say "sorry, I can't possibly do that" over and over until it became second nature.

The only time my parents had backed off was when I fell and broke my arm. Wearing a sling was a great visual prop :) So is walking with a cane. I remember one time my parents and I going into the doctor's office, all three of use with canes [for me it was pinched nerve in my back].

Now, here is one thing that will make one stand up at attention.... up to 40% of caregivers taking care of a love will die leaving behind the love one they were caring. Then what? If there are no other relatives to help out, the love one would be placed in senior living.
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Ladybug518 Jun 2020
Thanks for your reply. I did feel I would collapse and die a couple days ago before she entered hospice. It was very scary. She was lucid for a short time last week when I tripped and fell in the living room. She was so sweet and kind to me, like her old normal self, trying to help me. An hour went by and she was calling me and demanding help. She had forgotten I had gotten hurt. I guess there is no winning when dementia is involved.
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Part of her dementia is that they literally no longer care at all what they put their families thru. So there is no awareness that she is slowly killing you. There are often not even thanks. It becomes necessary to stop expecting any of the behavior that you used to see from your LO. That LO is gone. If she is admitted to inpatient hospice unit, she must have expectation of a short life expectancy. She may still improve and no longer qualify. So you might want to identify a memory care facility for her to go to just in case. Even with Covid, I would not consider having her back to your house. This really could kill you.
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Your mom is being cared for. Step back a little and let her adjust. Of course she will guilt you but 13 years is enough.

You are entitled to live your life. Now it’s YOUR time.

My mom was in a NH for the last 14 months of her life. She had to go after she was found to be constipated and had a fecal impaction. No one knew. It was no one’s fault either.

She did not like it at all. Prior to her admission she had wandered outside in the middle of the night, left on an Oil Fryer and the oil started smoking and she almost burned her place down.

You have to steel yourself to the complaints and negativity. What’s worse is as a caring daughter/son, her complaints probably make you be able to make everything alright.

But you cannot.

Go to your car after the visits and cry. I did- many times. Take it day by day but don’t bring her back home. At our age (I am 62) physically it’s impossible to do it all.

Go see her, care conferences, etc. Assure her needs are being met and be her advocate while there. All of the above is being a good daughter, which you have been. But it’s time for you now.

Best of luck to stay strong !
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I disagree with the sentiment of your last paragraph. Please think of this differently. You’re not choosing to be healthy at your mother’s expense. “Happy” is over for her, it’s not coming back no matter where she is. I’m there with my dad, life has simply become too hard at his age and with his problems that have no fixes, happy isn’t achievable any more. It’s sad, but the fact remains. You’ve not tortured your mother, you’ve found care for her with professionals that are trained to care for her. She’s blessed to have you, whether she can ever acknowledge that on not. Don’t listen to the endless loop of complaints, it changes nothing and only brings you both down. Keep the conversation pleasant, it will benefit you both. When it becomes negative and complaining, step away, get off the phone. I wish you wellness and peace
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Harpcat Jun 2020
Excellent answer!!
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Your mother is where she needs to be, receiving 24 hour professional care. You cannot replace that, she is in better hands where she is. She is no longer herself, but if she were of right mind she would not want you to feel guilty and sad. Parents don't want to be burden to their children, but by the time it happens they are usually no longer themselves.
I'm so sorry you're going through this. I know it's a very difficult time for both of you. Hospice should have a social worker for you to speak with. I wouldn't have made it through my father's hospice care without the social worker. Please please be gentle with yourself. You are a good daughter. Hugs to you.
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While on Hospice Medicare will pay for Respite.
Since mom is in a Hospice In Patient Unit for "symptom management" she might be able to remain there for her Respite time. And they may even add the Respite to the current stay. Please talk to the Social Worker or the Nurse at Hospice about doing that.
If she can not remain there for her Respite ask that she be placed in a facility for Respite. And if possible remain in the facility. Often a facility will have room/ a bed for a Hospice patient that they might not normally have available for a longer term resident.
You can ask the Hospice nurse about adding medication that will decrease anxiety and that might make things a bit easier for you BUT if you are burned out you need a break. You need to take care of yourself and your husband. You both need a break. And there is nothing wrong with admitting that you are burned out emotionally and physically.
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MIL stuck FIL in a nursing home for a couple weeks so she could regain her energy. Don't go every day to see her. Let her get acclimated to her new surroundings. You can call the nurses station and ask how she is. but let her stay there a day or so, let her get used to the place. Just tell her you were too busy, by the time, you were done, visiting hours are over.. if the have such a rule.
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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 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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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 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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