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My mother is 104 and has dementia. I live with her in an independent senior apartment. She can function. She makes her own breakfast and lunch and does the dishes. She dresses herself, etc. She does confabulate and imagine things like our spoons are being stolen or we have a dog or we just moved here. When I come back from visiting 'my old life' in NY for a day, she thinks I was gone a week and that my cousin - who stays with her when I'm gone - had to be called to tell me to come back. I've been living with her for 3 3/4 years. I gave up my life to keep her company and take care of her. I need a break but it is stressful for me at the same time to take a break. Leaving her, she freaks out and asks continually, when am I going? when am I coming back? What time does Robin get here? Will I be alone? Where are you going? I feel guilty and worry when I leave her. It's stressful. It seems to slightly traumatize her but I get resentful if I don't. I just turned 70 and am single. I TRY to go about once a week. Now it's much less often. I'm naturally very social but the only people here to socialize with are much older than me. My cousin watches her but she has her own life and I don't get to hang out with her so often. Should I just not go into New York where my apartment is? It's a 2 hour trip each way. I pick up my mail and see my friends. Should I give that up and just do things locally? I hate this feeling of guilt and worry.

You’ve given up too much already .
Mom has progressed to the point where she is actually living in an assisted living , memory care that you have created in your shared independent living space . The proof of that is that Mom can not be left alone .

I suggest you move Mom to assisted living ( perhaps memory care )where there is supervision and you get your own place and get your life back. Your mother is the one in need of care not you . If you stay your mother’s needs will keep increasing , leaving you trapped 24/7. Mom’s doctor can give her a med to keep her calm .
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TakeFoxAway Jul 28, 2024
I very much appreciate your responding. Thank you. And now I won't feel guilty when I plan my next trip. As for - If I moved my mother into Assisted Living she would literally go nuts. She would not survive. It would be instant nervous breakdown. She'd possibly become comatose. That's why I can't do that. I'm not exaggerating. The last time my brother moved her she fainted and developed a tik which drives me nuts. She wouldn't survive it. She's a highly nervous and shy person.
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You have chosen to live with your mom, but to think you must be a complete shut in prisoner to her dementia is not reasonable. Simply understand that her reaction is what it is, that it is a manifestation of her dementia, and that it will pass, much like a weather system. That you know to expect it, and can live with it. You have provided for her safety, with the cousin being there. Time for the two of you to accept that this is just "how it is", and to afford yourself these breaks. Wishing you the best!
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It’s unreasonable to stay with Mom all the time .
Think of it like this . Young children also cry if Mom leaves them at daycare or with a babysitter . But Mom still leaves .
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BurntCaregiver Jul 28, 2024
@way

The kids get over it though. The OP's mother will get over it too.
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Enough is enough already. First of all, don't even tell her you're going until your bag is in the car and your cousin who stays with her has one foot in the door. If your cousin isn't available, here's what you do.

Hire a caregiver who stays with your mother two weekends a month. Then you go to your apartment in NY and stay for the weekend. The caregiver will know how to reach you is she needs to and you don't even call home for those two days.

No one's entire life should only be caregiving and keeping someone else company. You deserve to have a life too. When your mother was 70 was her whole life just keeping her mother company and taking care of her needs? My guess is no.

A paid caregiver can keep her company a couple weekends a month. So hire one. Then maybe you can your cousin (the one who stays for your mother) can hang out a little bit and actually enjoy yourselves.

Also, if you leaving slightly traumatizes your mother so what. Pulling onto a highway slightly traumatizes me every time. Yet I do it every day. Your mother will be fine, trust me. Hire a caregiver who will come and stay two weekends a month and take back some of your life.
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Just leave and do your thing every weekend! Mother is 104! She'll outlive YOU if you're not very careful! Ditch the guilt too, while you're at it. You've already moved in with the woman, and are now begrudging yourself a trip back to your own apartment because mom misses you?

What would you advise someone else to do in this situation?
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MiaMoor Aug 3, 2024
That's always a good method to get someone to see that what they are putting up with is unreasonable - what would you say if your best friend/daughter/son were having to deal with this? That's a real eye-opener!
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Mom has lived to the blessed age of 104. It's time to start gradually getting back to your life in New York and to your own living space.

I agree with Burnt with hiring a caregiver to come in for those weekends. You need a break.
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"If I moved my mother into Assisted Living she would literally go nuts. She would not survive. It would be instant nervous breakdown. She'd possibly become comatose. That's why I can't do that. I'm not exaggerating."

I find these statements very troubling. You must know that there are meds to control mom's emotions and moods, right? They should be used so that she'll be more comfortable, especially at times of stress like moving. As it is you have fashioned her psychological quirks into a huge bugaboo that keeps you from placing her in a situation that would be better for her and better for you. My question is why do you WANT to believe that she'd (1) go nuts (2) not survive (3) have instant nervous breakdown (4) become comatose? Just because they happened before doesn't mean they'd happen now. Her brain has changed and will continue to change. Do you perhaps have a need to be needed? This looks like enmeshment to me.

Yet your post shows an urge to break free, and you should. You're making too a great a sacrifice for mom. You could at least try the meds (on mom, but maybe yourself too). Find a counselor. And stop worrying about her (1) (2) (3) and (4) issues. At age 104, any of those could happen any time. Find a good memory care home for her, not an AL, and don't go (1) (2) (3) and (4) yourself. Resume life. I hope it's not too late for you to throw off the chains and be free.
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waytomisery Jul 28, 2024
Exactly ,

I have chronic generalized anxiety disorder brought on by caregiving a mother who was like OPs mother , who I allowed to demand too much of me my entire life. My anxiety is my problem not my children’s. I would never want my child to live with me at a senior community and give up their life. It’s selfish for a parent to expect that .
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What happens when you have to go to the doctor or the store? There are obviously times when you have to be away on necessity that need not be explained or negotiated. I wouldn’t even tell her until you’re opening the door for the caregiver to come in while you leave. And if she won’t accept them, then really leave and inform aps.
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TakeFoxAway Jul 28, 2024
I can run to the store and leave her or I take her with me but I have not gone to the dentist in 2 years in order to cut back on going.
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Please resume going once a week, lose the misplaced guilt, and stop discussing the plan to go with your mother ahead of time. When the person staying with her arrives, leave quickly with a “be back soon” and go enjoy your time. Mom is declining, after an incredibly long life, whether you’re there or not. Practicing self care is vital in your role, just as important as caring for mom is caring for yourself
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OF COURSE you should continue to get away every now and again, and to wherever you want to go.
Your 104 year old mother has had her life and you now more than ever need to have yours.
Be grateful that you have a family member that is willing to come stay with your mother while you're away, and by all means continue to take advantage of their help.
You deserve it, and probably should do it more often instead of cutting back. Perhaps you need to stay away for more than just a day though, to be able to get more of a true respite.
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DUE TO EVERYONE'S RESPONSES AND ADVICE I AM GOING TO NY TWICE THIS WEEK.
THANK YOU EVERYONE!!!!
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funkygrandma59 Jul 28, 2024
WOO HOO!!!! Good for you!!!
Have fun!
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To Ms. Fox:
TAKE YOUR LIFE BACK. You have people here behind you 100%.
Get Social, have fun! Come back and tell us about it!
(I just turned 70 myself)
YOU GOT THIS!
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UPDATE!!!!!!!:
Major thanks to everyone here who answered my distress call. I cannot even explain how each of your answers helped me in one way or another. I went home twice this week. Each time I left quickly and explained little. Thursday morning sometime after I told my mom I was going to NY she came in my room and announced: "I'm going to kill myself." I was proud of myself. I didn't respond. My cousin said she was great all day.
I feel I have a new lease on life in a way and thank each one of you for your advice and comments.
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funkygrandma59 Aug 2, 2024
Woo Hoo!!! We are all rooting for you!
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You should start preparing for the day your mother is no longer with you. Develop a life that does not revolve 100% around her and her needs. Her anxiety could be managed a bit better by not springing the information until you are ready to leave for NY. Also, ask her doctor about anti-anxiety medications to help her relax when you are not there.
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I guess there are elders that move into a Care Home & feel sad, alone, even unloved (even thought it may be FOR love, safety or extra care).

Some maybe just holding on to life & moving signifies a shift.. so they shift.. & let go.

Our wonderful poster Mid, experienced this with her MIL - who threated to die if she was moved into care. She did too, pretty quickly BUT she had been in serious decline for a long while beforehand.

I kind of think at 104 yrs old, the window to move into a care home, get used to it, even like it.. may have closed.

But hiring good help to stay in the home when the OP is away is still be an option. Maybe the best compromise.

Let's face it, Mother got old. Such is life! Her independance started to slide into semi then dependant. (As will it for all of us if we live long enough).
Mother's health changed. Yet it was the OP that moved house.

I had a relative say to me.."If I get old & feeble, the kids will have to move in & look after me. So I can stay living here, the way I am".
I answered 'When YOU get old, YOU will need to change how YOU live'.

Why must one person make all the changes so another person gets to avoid reality, avoid change? 🤔
PS but dementia is cruel & people do need our compassion ❤️
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God bless her ...she is probably sundowning as many people with dementia get later in the day.
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God bless her ...she is probably sundowning as many people with dementia get later in the day.
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You definitely deserve a break guilt free!
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Oh, the tyranny of the disabled! You need to take care of yourself, or you won't be able to take care of her. You are fortunate to have someone who can come and be with her while you get away. Could your cousin stay once a month for a whole weekend, so you could really get away and relax? Of course, you will have to put up with the blowback when you return, but try to ignore the sulks and the accusations when you return. You deserve and need a rest or you'll burn out and then she'll have no one.
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First, I'm on team "take care of yourself,' to renew, have / continue a life of your own.

What I'd suggest:

* Don't tell her you are leaving (if it might work) ...
- Say you are going to the store.
- Will she know the 'time' difference? If you infer you'll be gone for a half hour, she may not feel so alerted.

* When you are gone, if it might appease her, stay in contact by / with Face Time or some way by cell phone or computer way wherein she can communicate / see you. If it upsets her, do not do that.

* She will continue to confuse the timing.

* As possible, could someone else be with her besides your cousin - on occasion? It sounds like seeing the cousin is a LEAVING TRIGGER to her. This may be 'too much' to consider.

- Or have cousin come over for a visit when you DO NOT leave so the association isn't automatic.

* Absolutely, GO to New York. She is 104 with dementia. While I know you know this ... you are reacting out of duty, respect, love, caring --- although you need to keep yourself as whole and holistic(ly) healthy as you can.

* SHORT TERM THERAPY - Try it to work through guilt, grief/sadness. I would presume some of your feelings have to do with 'this could be the last day / week I'll get to see her. I want to be there when that happens.
- Discuss / see if there is a way to be present w all feelings: GUILT and WORRY with the positives. In other words, not one way or the other. Hold both as equals (I feel sad and conflicted and I enjoy my time in New York visiting with my friends, TOO).

- I know that often 'trying' to push feelings away keeps them more present and stay there. Do you feel you are processing through your feelings?

* I wonder if you thinking about / reviewing her life in your head - the good times ... the good memories ... when you start to feel sad / guilty will bring some balance / shift your psychological / emotional reactions when you need an inner pep talk.

* You DESERVE to be with your friends and enjoy your life.

(Try to)
- Process through them ...
I feel guilty because or when (I) xxx.
Write it out.
Get it out.
Flush it out.

None of this is easy. Congrats on turning 70.

P.S. You mom reminds me of my last main client who passed away at 104 about 4-5 months ago. While I fixed her breakfast... she was still quite animated / curious about / if not obsessed watching the news. She travelled the world if not more than once and said one day: "I forgot where Gaza is" ... I blew up a map from my Atlas. She said "Oh yes, I walked throughout Gaza in 19 xxx" - she was something else, as I am sure your mom is.

Lastly, do you have any unfinished business with your mom? I believe you probably have done all you can to be present with her and say / do what is needed at this time of her life. You are a good LOVELY caring, compassionate daughter. She knows this . . . even when you are in New York. You are in her heart. Mostly / some if her re-actions are due to the dementia. That will not change although she may decline. Just expect these changes and be present as often as you can - with her - and when in New York.

Gena / Touch Matters
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TakeFoxAway Aug 6, 2024
Dear Gena,
Your letter touched me so. You are a beautiful person to think about my situation so carefully. Thank you. I will read your letter more than once for sure. (And thanks for the birthday wishes). Such great advice.
Question: How soon after her 'animation' during breakfast did this woman pass away? My mom is somewhat animated but I've noticed she's lost weight and she keeps getting something wrong with her, month after month since she had Covid in February (I did too). Then she had Shingles and an ear infection. Yesterday I got her antibiotics for an infected tooth. I think her immune system isn't working.
I feel she is in serious decline. But I keep thinking she can walk with her walker well and likes to dance for guests. (It's cute). So that's why I'm curious. I'm trying to prepare myself.
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No, don’t give up your life anymore than you have already. Dementia will get worse whether you are around or not.

Let your cousin be with her or hire a vetted, trusted person to help her out while you are gone. You need the break and you need to keep your circle of friends.

Don't for one minute feel guilty or think you are making her worse. You’ve got to life for yourself. It sound like you are very loving and have already given up a great deal to take care of her. There’s nothing wrong with taking a break when you need one.

i agree with some others on here. Don’t tell her in advance you’re going. Fib to her. Don’t make a big good bye. Get your suit case in car when shes asleep or in bathroom. Or find someone else other than cousin to be with her. Make sure that person can entertain her…go to lunch, listen to music, take her for a ride around in car etc. to try and keep her busy. Hopefully you can find a friend or someone she knows…she may be freaked by a stranger. Or if you can, have the hired caregiver come over a few times to be with you both, so maybe she won’t be such a stranger when you leave. It’s hard to tell with dementia.

She’s had a good, long life. You have no reason to feel guilty about taking a few days for yourself. Let us know what happens.
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TakeFoxAway: Thank you for your update of August 2, 2024.
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Changes of routine are difficult for people with dementia and they may get stressed out, as your mother does. But as a caregiver, you also need to have time off so that you won't have caregiver burnout. Try not to feel guilty about attending to your own needs. Sadly, there is no great solution. If possible, it may be best to try and arrange for your cousin to be there when you leave so that your mother is not alone. With my mother, I always tried to time my leaving when she was distracted with a meal or an activity with another person. Reassure your mother that you will not be gone long. Hopefully your cousin will understand. Would it be possible or even desirable to also have an aide that you hire that can cover for your cousin, if it's not convenient for her to spend time with your mother? Remember to lock up your valuables and financial papers if there are strangers in the house. All the best to you and congratulations to your mother for her longevity!
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TakeFoxAway Aug 26, 2024
This is important for me to remember: "Sadly, there is no great solution." Thank you.
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Good for you for listening to the excellent advice you've been given and keeping up with your trips to NY!!
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Please DO NOT give up your social life. It is what will keep you healthy and sane. If longevity is in your genes, please keep yourself mentally, emotionally and physically happy so you can enjoy those years yourself. Actually you may want to stay in your apartment for the weekend if you can get the help. God bless you for your dedication to your mother. You need a life too. Look into an agency you can use for providing a live-in weekend aid. You can visit friends, rest, recharge, and have fun. Please don't feel guilty.
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