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.
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!
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.
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 !
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.
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.
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.
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
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.
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.
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.
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.
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.
It allows her to think that she has options.
Don't feel guilty. If you could manage her behaviors at home, you wouldn't have put her into hospice - correct?