My mom has been in a NH with dementia 4.5 months now. She asks to go home and wants to leave with me after my visits. How do I respond?
I realize it must be horrible to be stuck in a nursing home and never be able to leave. She is not a flight risk and there are nice outdoor spaces for her to go sit and enjoy the fresh air, but she won’t go unless I take her or someone else but she never asked to go outside. When she lived independently, she never went anywhere. She never tried to make friends. She never even went out in the garden that I had to plant and make nice for her. I tried to make her home pretty and everything so nice her and she just would sit in front of the TV all the time. Only time she would ever go out or anywhere is if she had me to entertain her. I believe she has had dementia for at least 10 years. But even before that she’s never been a self-starter if she was gonna do anything I had to do for her while she would sit and watch you do it and that was the only way that made her happy. Recently, some of the CNA’s in the nursing home were telling me they feel bad for her because she never gets to leave or go to lunch. I’m still trying to figure out how this works between my job, trying to take care of her extras, laundry, visits, moving her house and my husband is away most the time working, I’m finally starting to feel a little bit better about her being in the nursing home and now I have this guilt that I don’t take her out enough?. Honestly, I’m afraid what will happen. She has a lot of accidents, and I’m afraid what will happen when I take her back. She cries and asks me,” What am I supposed to do now”? I’m feeling like maybe she doesn’t have dementia and knows exactly what’s going on? That I’m a terrible person and put her in this prison. Anyone else experiencing this?
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And as caregivers they move into the "fix it" mentality of believing that there just MUST BE a fix for every situation, and they WILL find it.
And that they as caregivers are RESPONSIBLE for everything their loved ones suffer.
WHY is that?
Your mom has lived a long time now. And in her life there were MANY unhappy times.
And they had nothing to do with you.
And THIS time it has nothing to do with YOU either.
You didn't cause this and you can't fix it; this is old age. it is loss after loss after loss.
I am 81, a retired RN, so I can assure you of this.
You can start at the top of the head. The brain is going. The balance, the thinking, the abilities to reason and multitask and speak coherently. Move on down. They eyes, the ears, the swallow, the teeth.
The neck hurts. Either in spasm from muscles or with nerve pain. The spine is compressed and aching. The hands may have essential tremor.
The heart, the lungs, the GUT!!! Do you want me to go on, because I can.
And you DIDN'T CAUSE ANY OF THAT.
And you cannot fix it.
Your mom and I have HAD OUR LIVES.
Some of the time we have been happy; some of the time not. Take her pictures. Talk to her about her life when you go see her. Remember the good times (and the bad).
She talks to you about her problems because she sees you as the caregiver as well.
Now she is in care (as she should be) and you have to have a life (as you SHOULD and as you have a right to and as she would want you to).
This is what it is.
There's no way to make this about happiness, and if the CNAs where she is aren't clued into THAT yet it is time they begin to learn it (or are they still young?) Please tell them for this old retired RN that this is the stage called "end of life" and that the myths that it is a lovely time without loss and without woe and without care......that's all magical thinking. A lie. It is about loss and it is about GRIEF. It's about memory and loss and all that makes us human.
Please, the next time you want to use the word "guilt" think of me, and interchange it with GRIEF.
This is about grief. For her in her losses. And for you to stand witness to it for one you love and wish with all your heart you were a Saint, a Fairy, a God. But you aren't. And it's hubris to think you can be.
When my mom died, when my father did (both early 90s) I felt RELIEF for them. That they had not to fear further loss; that I had not to stand helpless witness to it. I hope my daughter will feel the same, and I hope I don't have to do life a whole lot longer. I KNOW what is coming and NO ONE can make it pretty.
Please, let joy leak back into your life. Do NOT hold yourself responsible for something that is a part of life, and that cannot be made perfect.
My heart goes out to your loving soul.
My grandmother came from a long line of old Italian drama queens. Everything was a crisis. When she lived in a nursing home and family members came by to take her out, upon taking her back, she'd throw herself down on the pavement in the parking lot and scream she was dying. That guilt trip she pulled every time prevented her loved ones from taking her out anymore, truthfully.
My mother lived in Memory Care Assisted Living and threatened to kill herself all the time when I'd visit her. There was no way I could take her in my home, she had way too many issues to live anywhere but in Memory Care or Skilled Nursing. But that didn't stop her histrionics.
What it DID stop was me from visiting as often as I would have if she'd have made the visits bearable.
The truth is, as soon as the family left, both grandma and her daughter, my mother, were schmoozing it up with staff and residents ! The drama is reserved for US, to play the guilt card HARD, as if it's our fault they're old, with health issues and dementia. It isn't.
Call the staff to see how mom is doing when you're NOT around to learn the truth. And don't take her out. Bring food there and eat together. Otherwise, she may pull a grandma stunt too and throw herself on the ground in the parking lot screaming she wants to die. You dont need the added heartburn.
Good luck.
https://www.agingcare.com/questions/parent-in-memory-care-nursing-home-wont-get-up-refusing-showers-and-physical-therapy-487577.htm
Your husband should have been your #1 priority all this time. If you are depressed (which is sounds like from your profile) you need to do self-care: see your doctor, see a therapist for your dysfunctional co-dependency); consider meds; and consider seeing your mother less. A lot less.
You are not responsible for your Mother's happiness. She had her whole life to work on that herself and chose not to. This is the retirement she planned for, so allow her to have it, without your involvement.
Too upsetting for both of you.
Shame on the staff to make a comment like that about taking Mom out .
When you visit you can bring her take out food , even eat the meal you bring with her if you like . You could have this meal together perhaps outside in the courtyard at the facility.
AL and MC are not Nursing Homes. My mother is in AL, age 99, she loves it, however she is a social butterfly not a hermit.
You will never make her happy and that is not your job, it is hers.
IMO if you take her to your home, you will be wanting to return her to MC in a month. She is in MC for a reason, her brain is broken and cannot be fixed.
That quote is attributed to Abraham Lincoln, and I agree with it. With dementia, your mother now has a broken brain, but it sounds like even before that, she never learned that happiness comes from within.
Other people cannot make someone happy, so don't put this undue burden on yourself. What the CNA said about her not going out was out of line, so just ignore it. If you're not comfortable taking her out, then don't do it, and don't feel guilty about it. What if you took her out, and she had a fall?
People with dementia need routine and familiarity. Keep doing what you're doing, and know that you are doing a great job. When it's time for you to leave, don't tell her you're leaving. These events can be triggering. Instead, get her involved in something to distract her, such as a meal or activity starting, someone else involving her in conversation, and quietly step away.
She may not remember your visit, but you provided love and companionship during the visit, and she will feel that during the visit, and that's what counts.
Taking her out often can backfire fast. Dementia patients need as much structure and routine as possible. Even just lunch for two hours can throw them off. What was two hours to us is like two weeks to them.
This can be anxiety. It can also be lack of initiation.
The skills needed to *initiate* fade. Unable to find a solo activity to engage themself. Sometimes a person will wander looking for people but not sure how to join in with them. This is why assisted living provides structured activities & groups.
Visits: I would time your visits to end just as an activity or meal is due to start. That way you 'hand over' directly to the next thing : the lunch table, the movie afternoon group or sing-a-long time.
You may feel less guilt at leaving too, knowling she is occupied.
Going out: If going out will be too burdensome, don't do it. (I dislike that word, but dealing with mobility, incontinence & anxiety issues in public IS burdensome).
Bring some tasty treats or takeaway, sit in the garden (or view of a garden if too hot/too cold).
Bring the experience to her instead.
Dementia: despite tv & movies, it is not just problems with short term memory. The brain is complex. Dementia effects many areas of the brain - can effect memory, reasoning, judgement, initiation. Later will effect sight, speech, swallowing, balance.
Your Mother is lucky to have you so involved on her care.
https://www.agingcare.com/topics/19/sundowners-syndrome
My 100-yr old Aunt with dementia Sundowned every afternoon, getting agitated and wanting to get up out of her chair to "go home" (she could not walk unassisted). Yet she was sitting in her home for the past 45 years. Sundowners are thinking of the childhood home in their long-term memory.
Please talk to her doctor about meds, which may help. Depression and anxiety are extremely common in people with dementia -- and they can't help it and now do not have the cognitive abilities of reason and logic and memory to dig themselves out of this mental hole. They need help to do it.
As for the staff making those comments... yes, shame on them. My husband and I provide care or manage care for 3 LOs (89, 94 and 105). That's down from 5 people. We are not yet retired, are elders in our church so very busy with that, and have kids and grandkids locally. My MIL is in a very nice facility close to our house but because of all the other commitments and my own Mom living semi-independently next door, and having to do long-distance management for my Aunt, we don't go visit my MIL in LTC as often as possible. I've had to work hard to not let this fact guilt me, or worry about what the staff presumes. I'm over it. We can only do so much.
Has you Mom never had a cognitive test to confirm she has dementia? Even if she doesn't, she's in AL for a reason and it would still be her responsibility to adjust to it, since it is the only real solution considering the circumstances.
Dementia and memory loss get progressively worse. Please consider meds for her to help ease her anxiety as this is merciful. Practice not caring about what others think or it will drive you nuts and cause you to make unwise decisions.
If your mother has not been anywhere in a long time and has dementia, taking her out to lunch will probably be overwhelming to her. Don't do that.
I did homecare for 25 years. I had many clients who had been homebound for years never leaving their houses, apartments, or rooms. Just sitting in front of the tv all day usually watching cable news and being totally miserable.
In the first couple of visits if there was an a spouse or adult child they would stay. Then I'd tell them to go when it was my shift. We'd start small then work up to going for a drive or out for a walk on their street. I think this may be exactly what your mother needs.
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