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I'm reaching out to see if anyone has a similar experience to mine. I relocated a year ago to care for my older brother who has vascular dementia and clinical depression. I lived in another state, and I was flying back and forth monthly after I had to put him in an AL and become his POA.


My brother did not adjust well to the care facility. He would not eat or take medications at first. He doesn't speak to anyone or attend activities. He stays in bed all day and has to be coaxed to get up and go to the dining room to eat. He seems to have lost his will to live. I was getting burned out flying back and forth to try to help him, so I made the difficult decision to relocate.


Although I knew I was uprooting my own life (I'm single and retired, age 70), I couldn't just abandon my brother because all other family members/friends have died. It's just the two of us left. I am struggling to make a "new life" for myself here in a different city, but starting over again is rough at 70. I am glad I was available to come help my brother, but this major life change so late in the game is harder than I thought it would be. With God's help, I'm making new connections and finding new activities. I do feel twinges of guilt from time to time when I choose to do things for myself instead of spending time with my brother, but I'm hoping this will get easier. It's one day at a time for now. Thanks for listening!

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amazing what you’re doing for your brother!! :) :)

hug!!
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svking Sep 2021
Thanks for the virtual hug, bundleofjoy! Much appreciated! I will pass it on. I meet with an online caregivers support group, and some of the folks there need hugs too. Thanks again.
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Please don't feel guilty in doing things for yourself. Your brother is safe in the AL. If you are going to stay there then you need to make a life for yourself. When we care for others, we need to set boundries for ourselves. What we will and won't do. If you want to take a day and just veg out in your PJs thats your prerogative.
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svking Sep 2021
Thank you, JoAnn. I have taken several of those days! They really help!
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Is there any way you could move back to where you came from and relocate your brother to a care facility there?
No one your age should have to start over again from scratch in a new place where you don't know anyone.
You established your life in the state you came from and deserve to be able to remain there. Your brother being ill and having dementia does not mean you have to give up everything you worked a lifetime for.
Move back home and relocate him to a care facility in your area.
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svking Sep 2021
Thanks for your reply, BurntCaregiver. I did consider what you suggest at first. My brother has mental health challenges, in addition to the dementia. His doctor thought it would be better for my brother to be in his familiar surroundings and relocating would add to his depression. Of the two of us, I was the the one more capable of adjusting to a new place, although I knew it would not be easy. I think it's a matter of managing my reality as it is now. Thanks again.
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"I do feel twinges of guilt from time to time when I choose to do things for myself instead of spending time with my brother, but I'm hoping this will get easier." You up and moved away, at 70 years old, for your brother's well-being, and STILL you are feeling guilty for trying to carve out a life of your own???

A BIG part of being in Assisted Living (hopefully he's in Memory Care AL?) is that your brother create his own routine and lifestyle IN the AL, without relying on YOU for his entertainment. If you are there with him all the time, you are preventing him from creating that new routine for himself inside the AL. Only visit him for limited times and limited days per week to enable him to do that.

If the AL is allowing your brother to stay in bed all day, that is a problem. My mother lives in a Memory Care AL and they DO NOT permit such a thing to happen! All residents except hospice patients must be up and dressed and out of their rooms by 9:30 am each day for breakfast. Period. The caregivers see to it, in fact. Otherwise, the resident can waste away in bed and that is not the goal of Memory Care. The goal is to have the residents interact, socialize, participate in games and activities designed to stimulate them, eat meals together, take short trips to scenic places on the mini bus, etc. If the AL is not doing this with your brother, the AL is the problem here, not your brother.

Remember that it is not YOUR job to keep your brother entertained and socialized, fed and healthy every day; it is the ALs job to do that. Visit for limited times every week and then use the rest of the time to live YOUR life, my friend. Don't get so caught up in HIS life that you neglect your own. There are TWO lives of importance here, not just one. We often get SO caught up in the elder's life that we start to think ours is unimportant, and we lose ourselves. THAT is the big mistake. You've already moved to a new state which is too much by most people's standards, so don't continue to set yourself on fire to keep him warm. See to it that the AL keeps THEIR promise to keep him happy, healthy and stimulated!

Best of luck.
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JoAnn29 Sep 2021
By law no adult in a facility can be forced to do what they don't want to. If a resident wants to stay in bed, then they stay in bed. You are paying big money to live there. The goal maybe to keep them active but if they don't want to participate they can't be made to do so.
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Sv,

For a bit of perspective:

If your brother went to college, and you relocated to follow him,

then became his entire social life,

his activities director,

would he have thrived there?

He won't thrive on his own at his AL, if you do the same things for him there.

YOU need a life of your own, as well.

YOU need a social life.

YOU need activities.

YOU need a comfortable home.

YOU didn't move into an AL. Your brother did.

If he were to pass away, what would you have?

Take care of YOU, too.
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svking Sep 2021
Thanks very much, Cx. All very good points. I think this is the great balancing act of caregiving. Taking care of myself doesn't mean I'm taking any caring away from my brother. It's taking time for me to let that truth "sink in." Thanks again.
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Yes, I was caring for my Mom and she wanted to move to another state to be near her last remaining relatives - her 90+ year old brother and sister-in-law. So, we sold real estate and moved across country.
Unfortunately, within a few years her brother & his wife both passed away.

Now, I'm here alone - except for my Mom who is now in her late 80's confined to bed. I'm In my 60's & disabled due to a fall.

It's been hard, mostly because the virus shut downs have limited my ability to meet people. And most people around my age already have their own social networks developed.

So, yes I've done something similar to you.

I just take the good days with the bad days, and try to make myself as much at home here as possible. With the change in real estate prices lately, realize I can't go back "home." But, even if I did - most of the people I was friends with have moved to other states and other areas. Or focus entirely on their grandchildren - taking care of them, raising them. etc So wouldn't be seeing them much anyway.
Some have passed away, also. Not much left for me there.

So, you're not alone and my advice is to "bloom where you're planted" as they say - if you like your new area and plan on staying there.

The option of leaving will always be there, just depends on what would be waiting for you wherever you went.
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svking Sep 2021
Thanks so much, LavenderBear. It would not be easy for me to go back "home" either for many of the reasons you noted. I'm reading a book called "The Unexpected Journey of Caring" by Donna Thompson. It's all about how caregiving can throw a wrench into a person's life plans, even in their later years. As you say, we need to find ways to "bloom" in our new settings because our lives have to keep growing, even while we're caring for someone else. Thanks again.
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Wow!

That is really difficult during a pandemic. My children moved last year and have been lucky to find 2 friends in their new town. They are considering moving again if my son-in-law gets a job nearer to us... and to more friend opportunities.

Consider moving back to where you are comfortable... and moving your brother to be near you, He might also do better with a short stint in an inpatient psych unit to adjust his medications.
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svking Sep 2021
Thanks, Taarna. I mentioned in a reply to another post that moving back to my old location won't work for me or my brother now. He does have a psychiatrist who is monitoring his mental health medications. Thanks again.
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Oh yes! At 65 yr old I retired and moved from NYS to Virginia to “help” my brother with my mom..she is 88yr old and has Lewy Body Dementia. My only daughter is in NYS. Now at 70.. I sold my cute condo and moved myself to a nearby retirement community apartment {average age here is 84} so I could move my mom into a memory care assisted living facility on campus. So much easier to visit and care for her! I can walk to her building. I have essentially given up my retirement to to be her POA, social director and health care advocate. Now my brother at 69 has health issues and also bought a condo further south. I am attempting to make friends here. But mom is a part time job and that limits lots of activities I could be engaged in. And yes..I feel cheated and even used at times but I keep fairly active in my church and am slowly making friends. This is a bit disappointing to say the least! I rarely feel guilty but at times I feel like I have lost my retirement {I am healthy} and will never get it back.... I have done counseling. It helps. Our situation is a result of great medicine prolonging life into 90’s even 100..When my mom turns 100 I will be 83! She is quite healthy and that outcome is not unrealistic. I am wrapping my brain around the fact that this may be my life for a long time. My mom is pretty good company so it is not so bad. We must find pleasure where we can and pray we stay healthy! Good luck.
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XenaJada Sep 2021
With LBD she is highly unlikely to reach 100.
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I relocated at age 60 from Houston to a small town in Virginia. Had no idea that 6 years later, I would be full-time caregiver to both parents. Fortunately I had established a network of friends in the new town. When you get a bit of time and have the energy, I'd recommend joining a club (hiking, bird watching, canasta, dining in, etc), or do a bit of volunteering (library, nature preserve, reading tutor for kids), or a church, and chat to people. It helps me remember there is a life outside caregiving and gives me perspective.
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svking Sep 2021
Thanks, BernerMom. Yes, I am working on doing just that. I've joined a line dancing group at a senior center (we dance in masks!), and it helps my physical and emotional and social health. Building new networks takes time. I'm learning to be patient. Thanks again.
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Don’t feel guilty for finding time for yourself. Your brother is blessed to have you sacrifice for him. My siblings would never even consider sacrificing for each other.
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svking Sep 2021
Thanks, LoveLea. Yes, I count it a blessing that my brother and I have a positive relationship. I know that may change as his dementia progresses, but I'm grateful for the relationship we have now. Thanks again.
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This is a question, not a comment. On the surface, it seems like it would be easier to move a limited relative to a facility closer to you, than otherwise. I understand home care may be quite different. Are there legal or financial reasons (i.e. government support, etc.) to do otherwise?
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svking Sep 2021
Thanks, Moxies. No, the reasons are all personal. I did consider moving my brother to my old location to be close to me with home care, but his mental health challenges would have worsened if he was completely removed from his familiar surroundings. That would have caused an even greater caregiving burden for me. Either way my life was going to change completely. This kind of situation is different for each individual, according to the circumstances. Thanks again.
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Is there a local care-givers support group you could join? Keep an eye out for other relatives at the AL too. Building a friendship & support network for yourself will be worth it.

Supporting your Brother is a wonderful thing to do but you also have to support yourself.
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"Welcome to my life" - I also interrupted my life to look after my parents who reside in WI. I reside in suburban Toronto Canada so I took early retirement (62) to be able to look after them and have been splitting my time between the 2.locations since Spring 2015. Dad passed in 2016 but mom who is now 97 with advanced Alzheimers and become increasingly difficult to deal with. My saving grace has been 2 very good friends (that were passing acquaintances for a few years before this all took place.). I have also joined a local Seniors group in WI and have made friends there as well. During the 13+ month lockdown of the borders I was 'stuck' in Canada and needed to rely on one of the above mentioned friends to check on mom, take her to dental appointments, replenish needed supplies that memory care facility does not supply, etc. She even looked after my apartment/mail, etc. for me (for this I will be forever grateful). I also discovered that the church my parents belonged to for 20+ years also provided a visit every 2 weeks to check on 'former' parishioners and offered a kind ear when I needed it.
It is very difficult to watch a family member essentially die slowly so any emotional support you can find elsewhere may help you to cope with this situation. My thoughts are with you.
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YES !! I just started year 5 after giving up my apartment and all my furniture to help my mom. She has some early dementia and very bad joint arthritis..... and I cannot say it will get easier.

Sometimes I feel guilty but you will go insane if you don't do some things for yourself. I was getting very depressed especially with covid going on.

Best wishes to you... everyone has to find their own way. Its not an easy job but my thought is it is the right thing to do.
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When my mother developed MCI, I understood our plan for her to live with me when she was no longer caring for my father with vascular dementia had to change. First, my father would need memory care, and second, my dream home might not be a good home for Mom if she developed dementia too. Even though the dream home was one main level with a spot for a residential elevator I had planned on installing on retirement, it had a deck with a 14-foot drop onto a concrete patio and was beside a river. We also had a situation in the family where I was picking up my grand-nephews from their school every day and they were becoming resistant to going home to their father later (they stayed overnight with me when their father worked out of town and decided they liked staying with me more than going home with Dad, particularly when he remarried - not good).

I decided to leave my dream home after a little less than 6 years and relocate to my nephew's homesite. I placed a modular ranch home beside his home and moved there. My grand-nephews lived with me until after their father had built onto his house, although they still occasionally show up at my house for a few hours or to occupy their "old" bedrooms for a day or two. My mother moved with me.

Mom aged gently with her mobility problems becoming the primary constraint, although we would have to accommodate her MCI as some dementia behaviors developed it was never a major problem. Caregiving for her was increasingly isolating, some of necessity but mostly by choice. I couldn't leave Mom alone for more than a few minutes. She attended Adult Day Care (ADC) three days a week and I arranged for someone to stay with her so I could attend ballgames and dinners out, but often I didn't take advantage of that as much as I could because I wanted to make sure Mom was okay. With covid, ADC shut down for several months and we stopped having anyone outside our bubble in the house with the exception of the youngest grand-nephew since he was home-schooled and loved visiting with his great-grandmother. We did take in some extended family children who needed a safe place to stay and home school for a while.

Mom is gone now and I am alone in the big house, although the nephew and grand-nephews are next door. The grand-nephews visit me almost every day, at least long enough to sample my "leftovers". (Is it really leftovers when you cook something just to have leftovers available?) With covid concerns, I am slowly getting back into normal life: rejoining the church choir, attending ball games, taking the kids to the parks, visiting friends and family.

My relocation didn't affect my social life as much as caregiving, since I remained in the same general area. Your brother is in an AL, so be careful you don't limit your life too much around his schedule or needs when he is doing well. There will come times when he has a "spell" of bad health where you will want to remain close, so you need to make sure you take advantage of the times when that's not the case to tend to your own life.
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Could he not come to your city?

I relocated to my mother/sister city 3 hours away and it’s a struggle to help

My own life, friends, great doctors are a long drive away.

Now my only child and her family just moved to the the city I left, talk about frustrating. No one appreciates that I’m here and my mother spent years character assignation of the entire family. But worked non stop to get me here or she said she can’t make it.

What a shock, I’m 57 as of yesterday, I really wish I stayed where I was. I’d be with my grandkids now
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bundleofjoy Sep 2021
happy belated bday!!

courage!!
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❤️ I am 63 and relocated to care for my elderly parents. I too have found it difficult. From finding new doctors to hairdressers! No solutions for you…
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Your brother is indeed fortunate to have such a kind and caring sibling! I salute you!

Relocation as you get older simply gets more difficult... where are the best hospitals, the mechanics, the good doctors, etc.. I don't think there is a fix for it but hopefully one day you will find it the new location is now home. It happened to my Mom one day when a newer arrival asked her for a recommendation on a doctor.

Please drop the guilt when you do something for yourself. Part of adjusting to a new location is meeting new people and you might not be able to do that as well when your brother is present. Also you need "you" time for your own emotional needs. You absolutely have to take care of yourself. If something happens to you, who will support and advocate for your brother. You should still be number one in your own mind because all the strength and decisions come from you.

Hope you will feel free to stop in to the forum whenever you like - to vent, question or answer questions. This is a great village!
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svking: Yes, I can relate to your post. My late mother was adamant about living alone in another state and actually 7 states away from mine, despite my pleadings and attempt to plan for her. With a whole host of ailments, when her blood pressure bottomed out at 60 over 40, I had to move there and in with her to provide care. It was very difficult as I was already an elder myself. Best of luck to you.
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Your post reads as though you decided to relocate because it would be easier than flying to and fro to see your brother. It’s still hard to understand why brother didn’t relocate:

a) Doctor thought ‘it would be better for my brother to be in his familiar surroundings and relocating would add to his depression’. Why did Doctor think so? Hopefully not to keep a paying patient!
b) Has Doctor been proved correct? Probably not, considering that brother ‘doesn't speak to anyone or attend activities.... he stays in bed all day and has to be coaxed to get up and go to the dining room to eat. He seems to have lost his will to live’. What is ‘better’ about that? How are the very limited ‘familiar surroundings’ helping?
c) You decided that you were ‘more capable of adjusting to a new place’. You are finding it harder than you thought, and brother has made no progress at all. Was it the wrong decision? Are you stuck with it, or could you rethink it? ‘Managing your reality’ might mean accepting that it was a bad decision, you would be better off going home, and brother would be no worse if he relocated too.
d) You feel guilty when you ‘choose to do things for myself instead of spending time with my brother’. Why? Accepting that you and brother are the last of the family, why are you ‘more capable’ and why is your brother more important than you?
e) What does the future hold? How long is brother likely to live? How long are you prepared to live a half-life focused on your brother? What do you do if he predeceases you?

Don’t feel that you have backed yourself into a corner. Think again!
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SnoopyLove Sep 2021
All great points. The doctor seemed perfectly happy to prescribe martyrdom for the OP. I wonder if he would have accepted the same advice if he had been in her shoes. Not likely!

I feel as though that doctor threw a very kind and conscientious sibling completely under the bus.
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Hubby and I relocated back to his home state of OK. He had had to place his mom in a care facility (alzheimers/dementia), and they wanted us to come help take care of his mom. So I quit my job (hubby is 100% DAV), packed everything up, and we moved. We had been driving back and forth from MO a couple times a month. Other family were closer but showed no interest in helping - it was up to us.
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You made a difficult and generous decision. Good luck with your new life! Please don't feel guilty about not spending 100% of your time with your brother. You are entitled to some "you" time.
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TouchMatters Sep 2021
How do you suggest a person 'not feel guilty' because someone tells them to not feel this way? It is a process - and feelings like this are deep rooted (in belief systems and psychological make-up over their entire life). It takes a willingness to go inside and feel, and feel they deserve a quality of life that they do not have and want . . . processing through this deep inner journey may require a therapist to help people work through their feelings to make healthy decisions for themselves, and others.

* I realize your input is well intended.
* It just isn't as easy as you indicate.
* What would help this woman is if you've been through the same and how you lifted yourself out of this way of thinking. It is all about process, after awareness, after making a decision to change.
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It is wonderful when people truly love one another and want to help them when situations demand they get help. But the breaking point is when your helping someone in need impacts your entire life in a negative way, then you have a choice to make (after trying to solve all the problems first and they don't get solved). You give up your life and tend to them or you do what you can to make suitable arrangements for their safety and care and look after yourself. You have NO other choice.
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TouchMatters Sep 2021
The reality is that people DO have a choice and don't know how to make decisions in their best interest (due to guilt feelings, or feeling they do not deserve a life or to put their own life or quality of life first).

This is the dilemma or process - and why this woman is reaching out. It isn't so 'cut and dry' as you say - people always have a choice and choices are made moment to moment. It starts with awareness and figuring out the quality of life one wants for themselves.
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Yes..2 years ago my husband and I and our 14 yr old son whom I homeschool moved from NC to GA to move in with and care for both of my parents. My mother has dementia and my father has COPD and is in cognitive decline at the age of 88. 2 months ago my husband contracted Covid and didn't make it. I am now doing it all alone..However we found a church home as soon as we got here and several of the church in the area has ministered to my family....I don't know how people do this without their church families!! I can no longer homeschool either so next semester my son will be attending the local high school..yes..it has been tough..my prayers for you.
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SnoopyLove Sep 2021
Lakemama, I am so sorry to hear of the terrible loss you and your son have suffered. Blessings to you both.
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Could you relocate him to your to where you use to live?
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I met a girl yrs back who was caring for her Dad with dementia, along with her sister. Both doing the daily drive & checkins. When all-day care was needed, a care home was found.

But they looked at the big picture. Both were now tied to the city & area around the care home their Dad lived in.

One had wanted to move north & the other coastal... & he could live a decade more.

One holiday to check it out later, they had a compromise location, a coastal town up north. Arranged it all & flew Dad there.

I have always remember this - as such a fine example of listening & considering everyone in the plan's needs. A solution was found that suited all. Although Dad had to move, what he needed most was a good care home. (He had no concept what town he lived in).

So I would add, have a good think about where YOU really want to live. What state, what area, what sized town. Then book a trip & go get the vibe!
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It's too bad you didn't consider moving your brother to where you live since he was the one dealing with dementia & requiring more of your time. Since you did move, it's important that you develop a support system there. Join an Alzheimer's Support group, a church, if you have a skill or craft look for a group or place to share it with, check out your neighbors. Get involve in activities where you can meet a lot of people. Keep your long time friends in tune so they can continue to support you.
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TouchMatters Sep 2021
Yes! Do something you've never done before.
Are you interested in sky diving ?
Being a doggy foster mom?
The need is endless as are the rewards.
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* You will settle in; it is a difficult time with Covid although with Meet Up groups (if in your area), church/spiritual and/or healing/holistic centers, exercise groups, writers or artists groups, you will continue to feel comfortable in your new home.

* It is understandable, if not expected, that many disabled people, esp perhaps those with dementia who have difficulty or an inability to process new information, are thrust into a new environment. It will take time for him to adjust to the level he is able to (which may not be to the degree you've anticipated or expect).

* Do talk to MD / medical staff and see if medication for depression is needed or needs to be adjusted.

* While it is difficult to balance life when we are pulled into different directions (helping another vs renewing/maintaining our own sanity/health), it is more than necessary to put your self first - find (more) ways to feel good about yourself and newer life-style. Exercise, meditate, give yourself LOTS AND LOTS of self-compassion ("I'm doing the best I can and I DID move here to help my brother which is huge, showing my love and commitment to him and his care").

* I am sure there are many on this forum that have been / are in your situation. I am not. What I do (believe I) know is that it is imperative to keep 'our self' together to continue to find some enjoyment in life, and to be available to another. Self-care is especially important when the needs of the 'other' is never-ending. These 'never ending' situations require MORE self-care on a regular basis. Even buying yourself a bouquet of flowers to 'stop and smell the roses' at home. Sit, relax, reflect on all the 'good' you've done since your major move.

* He has checked out (or his brain chemistry has) - fear, confusion, depression. Perhaps the most (and best) you could do is bring him flowers, get a radio or CD player and bring him opera, Rolling Stones or Perry Como (!) CDs. When you are there, give him a hand massage or enlist another to do.

*. Tell us about your new life. I just turned 70 myself and it is an awakening to 'live my life to the fullest' as this feels more like the train is heading into the station... not a pun although I am going to Chicago (soon) by AmTrak ! . . . to visit Anderson Japanese Gardens, the best Japanese garden in the country.

* I am a care provider / manager working in a multitude of ways with my clients (and took on caring for a friend, 88, and manage all his care...) I am or feel consistently "ON" and need more 'me' time - and honestly, that 'me' time needs to be restructured to be health enhancing time - not sitting in front of the TV or playing scrabble or 21 on my phone as often as I do. I still jog at 70 although it is a very slow jog. Getting out to see the trees and cool evening weather helps me immensely even if my jogging is minimal. Getting 'out there' counts and to huge degrees.

- I also need to 'reset' and it is people like you on this forum that remind me of what I need to do for myself, TOO. ... BELIEVE ME. . . . It is SO easy for me to write responses here 'being on the outside looking in' (as I regularly do.)

- While doing that, I also need to take an honest look at myself and the quality of life I've created/am 'responsible' for and doing - knowing I am pulled in too many directions at once.

Gena / Touch Matters
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