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I’ve been responsible for my mother’s care for the last 10 years. She has suffered from periods of severe depression all her life. In the last 10 years there have been 5 times that she’s had to live with me and my husband for months at a time due to depression. After living in assisted living and then a memory care assisted living, her money is gone and we reluctantly moved her to a nursing home last month. My question is this - there is literally no one but me to be responsible for her and to visit her. My adult children live far away. My husband and I have just retired. We want to travel and potentially move to Texas from Massachusetts, which is where our younger daughter and only grandchild live. I don’t know what to do. How do I balance my obligations to my mother with the things my husband and I want to do now that we are retired. My mother has dementia but still knows who people are. She’s not oriented to place or time. If we don’t visit her, no one does. There is just no one around all all her friends are deceased. I’m so upset and crying all the time. I don’t know what to do. Has anyone been in a situation like this? I’m so exhausted from the last 10 years. We need a break.

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It sounds like you are reluctant to leave your mother "unattended." That's completely understandable, since you have been her primary caregiver.

Are you pleased with the facility and the quality of care that she has been receiving thus far? Is your mother settled in and comfortable there now? If so, go ahead with your plans, but if you're still feeling a little queasy about it, do it gradually. Start with taking a weekend away, then progress to week-long trips, depending on what kind of traveling you want to do and how your mother is faring in the facility.

Things may very well even out in time, and you'll be able to enjoy your life without guilt or apprehension.
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ConnorsGram Jan 4, 2020
We have a trip we scheduled last year for a trip to Florida that we had to cancel last year due to my mother being in the hospital. The resort was kind enough to let us reschedule to this coming February without any extra fees. I’m hoping we get to go this year. We have canceled probably half a dozen vacations in the last 10 years due to problems with our mothers. ( My husbands mother is 91 and in assisted living and physically very unwell, but at least my husband has a brother who also helps out. I hope we will make it to Florida this year. We need the break desperately. It’s a start.
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Maybe baby steps, start with small vacations, she is where she needs to be, she has lived her whole life, it might be time for you to the same. You have paid your dues by caring for her for 10 years, she is safe, has a place to sleep and food, not to mention being cared for by a trained staff.

Right now you are afraid to let go of her, her care, that would be step one... accept the fact that she is old and that you have done all that you can for her.

Your husband and your children should be your first priority, he had agreed to taking her in during the last 10 years, he now deserves to retire and enjoy his time with you and the family. Don't shortchange yourself or him. Accept what you cannot change and go about the business of living your life, you have earned this!

My best...
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ConnorsGram Jan 4, 2020
Thank you for your kind words. You’re right. I’ve done everything I can for a long time. Time to let go of the guilt. I’m trying. It’s easier said than done.
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I am an only child too, and like you, the only one to take responsibility for my 93 year old mother who lives in Memory Care. I had to move my folks here in 2011 so my husband and I could manage their care. Dad passed in 2015. We travel when we want to, but I feel that mom has to pass before we can move away and get on with our retirement plans. I mean, who else will be there for her in a crisis which is common for her? I feel like I have no other choice frankly, so I accept it rather than cry about it. What's the point? It is what it is.

It's easy for others to say Move On With Your Life....but how do you DO that when the phone calls keep coming in? Who else is the MC or the SNF gonna call with a question, a med change, an issue, a new hospitalization, a decline, a fall....etc etc ETC. If I was located in another state, I'd just wind up flying back here all the time anyway.

Wishing you the best of luck.......I feel like running away to another COUNTRY half the time and leaving no forwarding number, if that makes you feel any better. It's a lot, isn't it? My suggestion is to take a nice 2 week vacation to Europe or a Mediterranean cruise.......just get away and regroup. It's amazing what a refreshing experience it is for the soul to get away from all of it for a while.
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ConnorsGram Jan 4, 2020
Thank you for responding. I think I’m so worn out and overwhelmed that I can’t think straight. I’m on meds for depression and I know I need them. It’s not even the taking care of her all the time. I can do that even though it’s hard. It’s the inability to be with our grandson, who is 4 and the light of our lives, and his little sister who is due in July. I want to be with them. That’s what pushes me over the edge with all this. How to weigh my obligation to my mother against what my husband and I want for our lives now.
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Since your mother has lost her time and space orientation, the timing of visits is unlikely to directly impact her emotional state. She may enjoy your visit in real time but not be able to remember the visit at all, or remember whether you visited her hours, days, or weeks ago. Still, residents with visitors and involved family generally get better care. A big part of visits for me was making sure my LO was getting good care and had everything he needed.

Could you afford to hire someone to look in on your mother when you are out of town? Maybe 2 hours a week? Here in TN we have a volunteer hours requirement for high school graduation and for the state's college scholarships. My only child cousin arranged through the college's nursing program for a nursing student to visit and check on her mother mid-week. When the student fulfilled her volunteer hours, my cousin paid her to continue the visits.

If possible, I would recommend moving your mother to Texas after you have settled there. My understanding is your mother would most likely qualify for Medicaid in Texas after establishing a Texas residency. You may need to private pay one month of NH expenses if you move her directly from a MA NH to a TX NH. I suggest working with a Medicaid SW to get everything set up after you have moved to TX.

Please remember there is no promise of tomorrow and do not delay your travel plans with your husband or involvement with your children and grandchildren. A few years back my uncle took early retirement (age 60) to spend more time with my aunt who had an unoperatable blood clot leading to her brain and could have a fatal stroke at any time. They traveled extensively and really enjoyed themselves for a few years. Then my uncle was diagnosised with pancreatic cancer and died 2 months later at just 64 years old. My aunt outlived him by 12 years before the clot moved and caused a stroke. Dementia has taken your mother into a world where your physical presence is of little comfort to her. Give most of your time and efforts to the family who can still be impacted by your presence.
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ConnorsGram Jan 4, 2020
Thank you for responding. One of the reasons we retired early (age 62 and 64) is because we well know that there are no promises for tomorrow. It’s just the guilt. The damn guilt.
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I would do what you want: move to TX to be closer to your immediate family. Relocate your mom to a NH near your new digs. Your children should NOT be expected to provide any care. It's ok to ask if they want to do some "now and then" visits/help, but don't count on/expect/rely on them to take your load away. You can hire someone to do some of her care. It won't be "you" but it would be someone other than the NH staff keeping an objective eye on her. She may or may not accept this person, but...what are the options? A geriatric care manager (mentioned below by Grandma1954) is a viable option.

I do understand your situation. I am an only and have 3 "mothers" (I was raised with my mom and her 2 older sisters who never married or had kids for 18+ years. They are 90, 97 and 100. I also oversee care for my MIL who is in LTC 3 miles from me). You have to work on having peace in your heart over things you can't change. Please don't allow guilt to eat away at your happiness. You've done the best you've been able for 10 years! Many people don't even give or get that much. Wishing you a wonderful retirement adventure with your hubby and kids, whatever you decide.
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Riverdale Jan 4, 2020
Oh my goodness gracious! You must have the patience and temperament of a saint. Hopefully you had fond memories growing up and these women gave value to your life. I only had one grandmother I truly cherished. She imparted values in me that exist to this day. She was the simplest of 3 grandmothers I had,one being a step grandmother who was awful, but the richest in qualities. She lived to 98. It pained me greatly as her final years were in a nursing home that was not too happy. I visited and left crying each time but she could not walk and also spoke very little English. I admire you for your involvement.
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Conners

Im the last living kid for my dad. I cared for him and mom long distance for about 6 years. I recently moved dad to a nursing home near me. Mom died over a year ago.

Believe me, I know what you’re going through. My wife and I are both retired and are starting to do some traveling. We have two trips scheduled this spring. I see my dad just about every day but I’m not worried about taking trips. His dementia is to the point where maybe I’m his son or maybe I’m his brother. I could be away for 10 minutes or ten years, dad doesn’t know the difference.

Take your trips. Mom will be fine. Nothing to be guilty about.
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needtowashhair Jan 4, 2020
Exactly. Her mom is being taken care of by the nursing home. They are her caregivers. That's the point of a nursing home. If she needs to take a break, then take a break. Mom will still be taken care of.
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I feel ya pain! I am an only child with a much younger mother problem. My parents moved three houses down from me when they retired. All seemed OK until around age 70 when they strangely just "gave up" and started drinking wine all day and stopped eating nutritious food, exercising, socializing, etc. Things started to become a significant problem in 2010, and now here we are in 2020. Dad died two months ago, mom continues to be an ongoing problem. She will be 78 in a month. Her drinking, drama and reliance on me have been a growing and significant problem for a decade now. I finally got her into assisted living before Christmas but she has decided she hates it and is coming back to her home at the end of January. She is of sound mind so I can't override her decisions.

I told her it's my (and husband's) time to pursue some of our wishes. We are mid-50s and I took over our family business in my 20s so my parents could retire early and travel (they traveled the world!). I've done nothing but work for the last three decades and watch others go on vacations and weekend getaways.

My concern is continuing possibly another decade of shutting my life down for my mom. What if something happens to me or husband that we can no longer pursue our dreams? I will have a future full of regret.

One of my best friends, she is 56 - four years ago, she and her husband took in her 85-year old mother. To do so, they stopped taking their weekend beach getaways, and figured they would resume them "when mom died". Guess what - husband had a heart attack at age 60, gone in an instant. Left my friend scrambling for money, had to send mom packing to live with another relative. My friend is SO SAD that she missed quality time with her husband in his last years, and prioritized her mother's needs. So much regret!
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ConnorsGram Jan 4, 2020
It’s so hard, isn’t it.
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I have to say it. You aren't the sole caregiver for your mom. You aren't even a caregiver. The Nursing Home is. You are just visiting from time to time. If you need to take a break, then take a break. She'll still be cared for. She'll be fed. She'll have her diapers changed. She'll be kept safe.
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Upstream Jan 4, 2020
Stupid answer. She is a caregiver, and she is stuck between a rock and a hard place. The scenario you described only works if she is heartless and does not care about her mother's well-being. If that were the case, she wouldn't be twisted up the way she is.
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Live YOUR life.
Would you want your children to put their lives on hold for you? Would you want them to exhaust themselves and sacrifice for you like you did?
(By the way..time to let them know what YOU want when the time comes.)
If the move you want to do pans out look for a SNF (skilled Nursing Facility..aka Nursing Home) near where you plan on living and see if they will accept her and what would need to be done to transfer her. If she wants to move. If she can make that distinction/decision. But if you will feel bad leaving her then you will have to attempt a move for her just for yourself.
You can still be responsible long distance. Or you can hire a Geriatric Care Manager or rely on the facility to keep you current with monthly phone meetings. And maybe 2, 4 or 6 times a year make it an in person meeting as I am sure you still have friends in the area that you might want to visit on occasion.
By the way getting back to the move and taking charge of yourself...Maybe look into Retirement Communities that will transition from Independent to Assisted to Memory Care in case you ever need it. I think if you compare all costs buying a house vs Retirement Community it might be pretty even when you consider no property taxes, no gas, electric, water, lower food cost and lower transportation costs since most will transport you to a variety of locations.
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ConnorsGram Jan 4, 2020
I would never want my children to have to do this. When my mother was well she said more than once that if she ever needed a nursing home, she did not want us to give up our lives for her. But when I visit her now she says things like “I’m so happy you’re here. I was hoping you would come today,”. It breaks my heart. I guess we should start out with small vacations moving up to potentially next winter in Texas. See how things go. She’s 95 but extraordinarily healthy. It’s just the dementia. This could go on for a lot longer. Her sister is in the same situation but she is 100 and pretty healthy. I guess I need to just get on with my/our lives. If not, I’ll be in the hospital.
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I'm so sorry you're upset; we all get to the point you're at, if that's any comfort. It's a horrible feeling to be torn taking care of an elderly loved one and make any time for your own life. 

I'm wondering how/who is paying for her care? as you said her money is gone.

You may have to take her with you if you move to Texas to be close by cause you can't leave her so far away, especially in her condition. You'll obviously need to get that lined up in Texas so she's got a place to live and be cared for. Sorry, I know that's not the answer you want to hear, but you'll likely be more worried and upset if you leave her there, and then later have to make lots of trips to help and/or visit. 

Once you get her settled (it'll likely be harder on her at her age and with dementia) and yourselves, there may be the up side of your daughter and family visiting her and helping some (but don't count on it).  Whether they do or not, you'll have her near enough to help her.  When you think about it, you're thinking of doing the same thing .. moving closer to your daughter.  It may get better when you have your daughter and family close by to support you and doing other things.

Wherever mom is, you can't be there with her visiting all the time just because there's no one else.  Maybe cut your visits in half or more.  Ask workers to get her involved with other people and activities there.

You need to rest and take breaks; we all do. There's no shame in that.
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ConnorsGram Jan 4, 2020
We are in the process of applying for Massachusetts Medicaid for her. We had to private pay the first month $14k to get her in to the nursing home. We are thinking of maybe spending next winter in Texas to see how we might like living there. If we moved her I guess we would have to figure out how Medicaid works in Texas. The thought of all of this completely overwhelms me.
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