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!
* 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
Are you interested in sky diving ?
Being a doggy foster mom?
The need is endless as are the rewards.
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!
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.
* 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.
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!
I feel as though that doctor threw a very kind and conscientious sibling completely under the bus.
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!
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
courage!!
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.
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.
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.
Supporting your Brother is a wonderful thing to do but you also have to support yourself.
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.
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.
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.
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.
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.
hug!!