My brother has been living with our parents for several years to help them, while I lived 1 hour away. Our Dad had dementia for 7 years and just passed away. Our mom is 94 and bedridden, nearly deaf and nearly blind.
They have had 24/7 paid caregiving at home for 5 years, so my brother would be able to move out if he wanted to, but has felt he was still needed there. He is terribly depressed. I’ve tried hard to encourage him to move out and take care of himself but he refuses. I moved closer by to help out 2 years ago, once my son left for college. I stop by 2-3 times per week to visit, pay the bills, order supplies, and am helping out with our dad’s estate. It has been such a long haul. I always try to chat with my brother and we often have a good laugh over the insanity of the latest unimaginable event, but I am so worried about him. He refuses to take anti-depressants (I am on Prozac myself and it’s been a Godsend). He refuses to get a hearing aid himself which would allow him to be more social. I am at a loss, and way more worried about him than our mom.
In another words, listen to his issues, empathize with him, laugh with him, however, do not bring up your suggestions, unless he asks for it. When you bring up suggestions about moving on, make sure you thank him for the time he has already given up.
Because I was with my Mom so much, I got to see the cycles and the moods. It was easier for me to cope with the changes because the changes were gradual. When the caregiver had a hard time with my Mom, I would check to see what was going on. When my Mom grumbled or complained about the caregiver, I already knew 1/2 of the story.
He is probably a source of comfort for your Mom. As a result, she is less likely to act up.
While caregiving for my Mom, my sister and brother regularly (not more than once a week) suggested that I get another life. However, I knew that they were grateful for how close tabs I kept on my Mom because they told me so and emphasized it many time. (My Mom and I did not get along until very late in life.) If I hadn't been there as much, I would not have been able to answer their questions with certainty. I kept telling them, when the time comes to put her in a managed care facility, I will know.....and yes I did know.
When she left her home for the managed care facility, I felt no regret and felt like I gave all that I could. My sister and brother also had no qualms and said that if it were not for me, they would have put her in a managed care facility at least a year earlier. My sister worried about my mental health. I didn't worry because I knew that at any time, if things got too bad, I could move my Mom into managed care.
While my Mom was in managed care, I still saw her each day. However, it was for 30 minutes to 1 hour. Again, no regrets on my part or my siblings and when I had to make a decision, we discussed it rationally, no hurt feelings, no angst and most of all, no raised voices or anger amongst us.
So keep listening to your brother, empathizing with him, laughing with him, etc. When he wants to move to the next stage of his life, he will do so, with no regrets.
Does he interact with them?
Losing a parent, and soon both parents is hard. It's hard emotionally, and as you are learning, having to manage their bills and their estate. It's ok for him to feel down at this time.
It sounds like you have decided what your brother needs. He may see it differently. I have always had very pushy family members who like to tell me what I need to do. The result is, I don't like spending time around them. Their "advice" is not helpful.
Your brother has lived with his parents for years. If he was to move out, where would he go? Does he have another home somewhere? He may have become comfortable living where he is. Especially if mom & dad had 24/7 caregivers, so brother has not had to stay as their caregiver. He may enjoy being close with mom, and previously with his dad, and is comfortable there. Maybe he just doesn't know where he would go and doesn't relish the thought of living alone.
I'm glad you found help from medication, but it's not for everyone. And as an introvert, I bristle at others who insist I engage more socially.
What I'm trying to say is, you have offered support to your brother, and if he's not taking your suggestions, let him be. You've done your part. Just continue to be there for him. I'm glad you have each other and have a good relationship.
Your brother reminds me of a friend of mine who took care of her younger sister with Downs Syndrome.
My friend has always been a type A perfectionist. We have always been great friends but we are extremely different in certain areas.
She plans ahead. I like planning too, but I think it’s fun to do certain things at the last minute. She would never fly by the seat of her pants, ever!
Everything has to be ‘just so’ with my friend. She wasn’t happy unless she had straight A’s in school.
I am talking about from kindergarten all the way through law school. I wanted good grades too but I didn’t have quite as much anxiety as she had.
She always helped to care for her younger sister since she was young. They had a very large, Italian Catholic family. She was the oldest child. Definitely a leader!
When her parents died, she moved her sister into her home. She hired help so she could continue working. She refused to look into group homes for her sister.
When her sister hit her 50’s she developed dementia. She stopped walking. She didn’t eat as well as before and my friend had to hire even more help, plus she had hospice on board.
Eventually, my friend stopped working, went through most of her savings because she couldn’t bear to be away from her sister.
After her sister died she slowly started living again. She went back to work.
She grieved horribly. She did see a therapist before and after her sister died. She took meds for anxiety and depression. She’s improving. Her personality is still a type A perfectionist!
I have learned what to do and not do as her friend.
I never help load her dishwasher after we have get togethers in her home! She has to have every single dish a certain way and I am not that particular about how I load the dishwasher!
She loves my husband because he is like her in certain ways. Everything is done just so, no exceptions! 😝
You are a wonderful sister! I am sure that he appreciates your kindness and support.
Your brother sounds like my friend. He’s going to find his own way. He’s not going to follow anyone else’s lead or path.
Wishing your family all the best.
You're doing a wonderful job. Everyone has their own way of dealing with their lives/ circumstances, let him deal with it in his own way. If you can get him to join the forum with his own account, he will have the resources when he needs it. He'll be able to talk to people/ strangers, sometimes it's easier than talking with friends and family? He definitely has gone through a lot but he's not done with his personal agenda, something to be very proud of! Give him the link,tell him of your experience here.
Every one of us has some personal experience in one way or another to share.
Caring for the Caregiver
Caring for a loved one with dementia is a commitment that spans many long years. It is not a sprint to the finish line. You simply cannot put everything on the line today, as if tomorrow will never come.
It’s easy to get immersed in caring for a loved one to the point of losing sight of your own health. You should remember, however, that if you succumb to depression or burnout, the care process will, in all likelihood, collapse also. Doing right by your loved one means taking care of yourself now so you’ll be around to take care of them into the future.
Staying Healthy
Most caregivers experience anxiety, guilt, and depression. Don’t think that you can provide perfect care, that you have to do everything on your own, or that no one can do a decent job of caring for your loved one other than you.
While you care for a loved one with dementia, you may have to take care of other commitments as well, such as a career and a family of your own. Shopping, cooking, cleaning, and other mundane demands of life will be there to fill up every available moment of every day. As you rush to look after everyone else in the family, remember that it is often the main pillar in a structure that needs the most careful maintenance.
· Don’t take your health for granted. Even if you do not have any known health issues, visit your family doctor at least once a year and take care of all of your periodic health screenings.
· Listen to your body. Take any health warnings seriously. Watch for excessive fatigue, sleep problems, behavioral changes such as anger and impatience, changes in appetite, or unexplained weight gain or loss.
· Take care of your mental and emotional well-being. Relax, practice deep breathing, and meditate regularly. Consult with a psychologist, psychiatrist, or social worker when necessary.
Get Enough Sleep
Dementia often means disrupted sleep patterns for the patient and their caregiver. Inadequate sleep impairs the caregiver’s ability to handle the stresses of the day, and makes the caregiver more susceptible to depression and burnout.
· Try to recharge with a short nap during the day. When scheduling a nap in the patient’s daily routine, schedule one for yourself too.
· Even if you cannot fall asleep during the day, sit or lie down for a few minutes and close your eyes. Take a few deep breaths and let your mind relax. Focus on your breathing and try to relax the frown on your forehead. Five to ten minutes of meditation may be what gets you through the next hump in the day.
Have a Healthy Diet
Plan a balanced diet for both you and the patient. Try the Mediterranean diet rich in legumes, vegetables, fruits, fish, olive oil, walnuts, and almonds. Reduce consumption of fast foods.
Make Time for Exercise
It may be hard to appreciate the importance of exercise when you’re exhausted all the time. However, exercise is a great way to take a break from the demands of caregiving and flush out the toxic effects of stress. Exercise also helps reset your mood and give you a renewed sense of purpose and motivation.
· Have friends and family take over caring for the patient for a couple of hours so you can take a break and go for a walk or do some other exercise or relaxing activity.
· During the early stage of dementia, while you still can, exercise with the patient. Take them for a walk in the park, go on bicycle rides, or go shopping together. Arrange activities for the patient in ways that enable you to participate along with them.
· Fit a little bit of exercise here and a little there. When an opportunity presents itself, do some stretching and light exercise to relax and calm down. When the patient takes a nap or is watching TV, use the opportunity to do some stretching or yoga.
· When putting to
Your brother has heard you, so now let it go and stop trying to get him to take anti-depressants, move out, get a hearing aid, be more social etc.
All of that is only making things harder for him.
Continue helping your brother - that's priceless.
Maybe you already do these things, but offering encouragement.....Words of support and affirmation. Can you take over a meal or a treat? Change the linens?
Just offer a supportive ear if he wants to talk. Laugh with him. Tell him that he's doing a fantastic job - it's a labor of love. That will go a long way in lifting his spirits and helping him feel appreciated and heard.
Peace.
your brother needs tablets to help him
i think you should speak to his doctor
as you say he’s going downhill
they may need to intervene or visit him and have a talk with him
( if you have someone he will listen to ? Another option)
his depression needs help
So sorry to hear this
You can only offer your help to give your brother respite. He has to put aside his fears and be willing to accept it.
Can you get him to go out to do things with you, leaving mom with the caregivers? He could use a nice walk. A meal out. Shopping. Anything to help shake him out of his rut. Though, it is his problem, not yours, so it should not become your hobby either.
Good luck.
He is die hard vegan so will not risk eating out, and also quite a germophobe so doesn’t like to expose himself to potential threats (covid did not help that). He is very hard of hearing and instead of getting a hearing aid, he avoids social situations. I invite him over often and he promises to come over some time but “can’t right now, too much work, too tired, making dinner, etc”. I’ve begged him to take a vacation but he doesn’t like to travel, says it’s too much trouble to take off from work and pack, and he’s sure everything will go wrong if he tries. My husband wants to kidnap him and whisk him away to somewhere, anywhere, out of that house!
I have a friend whose MIL had dementia and her mentally ill son lived with her for at least 10 years, and worked either part time or not at all. It was a codependent situation. When MIL died, son actually pulled himself together! Got on meds, got a job and an apartment. It can happen.
Best wishes to you and your brother.
We were in a similar situation with my FIL and SIL and her DH. Except the reason for her reluctance to leave was glaringly obvious. My SIL and BIL moved in because they got in a bad spot financially when FIL did not need caregivers, but the switch quickly flipped and they became caregivers by default. But they were still financially dependent on FIL. They remained dependent on him for everything and it became a symbiotic situation with SIL caregiving, BIL barely working and FIL footing the bill for everything. (to be fair, we did believe he should pay for SIL's caregiving with something other than room and board, but frankly - he did and more, and more , and more over the years - he had financially supported them ,and MIL had before her death, for a total of roughly 15 years before HIS death, and the true caregiving efforts were a total of maybe 2 1/2 years, and a third year he supported them and HE was in a SNF)
He very obviously needed more than they could give him - he was 300 pounds and nearly bedbound and his physical care was next to impossible. He needed SNF care and we all knew it. SIL was falling apart. BIL was working less and less. And FIL was getting more and more demanding. But every time he would go into a rehab they would all agree he was able to come home because FIL refused to consider anything else because he had them to take care of him at home (we helped much like you, as much as we could). And their hands were tied because they couldn't support themselves financially.
FINALLY SIL told me she just couldn't do it anymore and we took the opportunity to find a SNF for him, very much with his verbal agreement at the time - but we paid for that for a long time because of course he changed his mind once he got there and stayed for a few days - but if we weren't going to provide care he had no other options.
When he passed- it hit the fan. Dh as the executor, was in a very hard place - because we weren't in any position to continue to pay the bills to keep the house open for an extended period of time- and the will stated that the house belonged to DH and SIL. THEY had nothing - literally. They couldn't even pay the bills on the house much less buy DH out of his share. So the house had to be sold as quickly as we could manage while being sympathetic to them.
It did work out - the sale of the house has given them some help getting on their feet.
But THEIR situation was what prolonged finding FIL alternate living arrangements when it was needed. Not FIL - we could have pushed harder in spite of his protests a long time ago and he wouldn't have had a leg to stand on because he wouldn't have had the options.
My point - is that your brother makes himself the solution - so no other options are on the table. He makes that choice and until he is ready to NOT be the solution - there isn't much you can do but support him and hope at some point he sees value in his own right to a life.
You can't and don't need to do more in an effort to get your brother to do less. He has to realize he needs to do less.
So we even learn from new posters, thanks for that.
Let us know how things are going please, you are a wonderful caring sister, and daughter
Holding your own boundaries not only helps you, but all of them.
Your brother has for some reason enmeshed his life into his parents. He is standing still in the deep bog of caregiving. You keep throwing ropes to help him.. he ignores. I am sorry. I think that IS all you can do. Keep suggesting he lighten his load.
HE is the one that must take action. Must move himself to the edge, grab your rope or find his own steps, get up & out.
A present he is choosing not to.
A wise therapist said to me once.
Stuck or stable?
We discussed these words & concepts... At least stable was not falling down further or going backwards! Maybe your brother needs to keep stable for now?
Something will happen that will FORCE change. And you will be there to help gather a TEAM to help.
He is likely depressed somewhat in the fact that this has long been his mission and he sees it coming now to an end. Which is the case.
Be there. Listen. Whomever is the executor help the other. Just be there and listen. When you become so enmeshed, so much "living" the caregiving, there is little else to your life.
It is a very difficult adjustment when it is over.
Just listen. You can make suggestions, as you tell us, about what has worked for YOU. But don't follow up, don't "bug him". Just be there, a calm presence in what is the end of all of this soon enough.
I am so very sorry. I had a friend who was so engaged I thought she could not come out of it. Then she discovered GAMBLING. I kid you not! She lived very happily until she herself passed.
Good luck.
First I want to say, what a breath of fresh air, to have such a caring good sister, many end up doing it alone, and complain about are siblings not doing enough (myself included)
You are right to be concerned, I'm sure just helping out the way you are is stressful.
It might be time to consider other alternatives.
Burnout is serious, I was so burned out, not caring about myself at all, I fell caring something way to have and ruptured a disk, and found this forum laying in bed, knowing I needed a change.
Caregiving long term can actually cause a type of PTSD, it changes the brain chemistry.
I feel your brother absolutely needs therapy, and I'm sure anti depressant would very much help.
You are a wonderful caring sister, take care of yourself too.
You will get good suggestions here.
I'm fairly new here, so I'm going to wait and read what others say. Best of luck to you