Feeling lonely and trapped. How do I deal with it?

Hi, Yep caregiving is miserable. I don’t find it rewarding at all and am frustrated that my parents seem to think I and my siblings should be doing this for them. Never had a plan and they chose to put their heads in the sand and not make any long term arrangements. All I and my sisters do is navigate crisis to crisis.

Maybe you can find an adult day care place to leave your family member so that you have some breathing space. I fly back take care of my parents every other month so I still have some breathing space. But I still hate it.

My father is coming home from rehab tomorrow. It’s been nice only having to deal with my mother’s issues. I felt like it was a vacation. God only knows how this is gonna go now.

Anyway, you need to take care of you. Find some help or services in your area.

Hang in, you are not alone. There are lots of us in the trenches as you will see from this blog.

I totally understand what you're going though and Hothouseflower is absolutely right. I have never found caregiving "rewarding" for one moment and I did it as employment for 25 years. It's a job and I stayed in it because the money was good in private care. I'm done being my mother's caregiver though. The phobias, anxiety, panic attacks, fight instigating, gaslighting, etc... I'm not a geriatric doctor and neither are you. Walk away. Put her in a managed care facility and take your life back.
I want you to know that you most certainly are NOT alone. So many of us have an elderly "loved one" that we are doing for who makes out lives hell on earth. You are not alone.
This is a safe place to vent and everyone knows where you're coming from. You'll find lots of support from the people on this forum and very good advice to.

16 years? Wow. I’m in awe. I lasted 6 weeks in 24/7 care.

This site, and the people on it, have saved my sanity!

Your feelings of achievement will come later. When you sadly lose your parent you wish to have all the awful times back, because your yearn so great. Keep going, stay strong even though you’re in a cloud of fog and remember you’ll look back one day and say I did it xx

You sound burned out and rightfully so. You should consider placing her. It would be good for both of you. You need to think about yourself for a change. Placing mom would be a smart move. She would have three shifts of folks taking care of her.... You would actually get to focus on yourself for a change and be in a better frame of mind to deal with it all.

Has she needed 24/7 care for 16 years and you’ve been the sole provider or has she needed help for 16 years but not full time it just worked into that and you the only option? Does she have an actual diagnosis of Alzheimer’s or Dementia and do you have all of the legal paperwork in order? Just trying to get a feel for what the last 16 years have held, I think we all know the gradual rabbit hole as well as the emergency need pit fall. I’m assuming you live with her, did you move into her home or did she move into yours?

”NO family in the area” does that mean you have siblings or family your close to out of the area or there simply isn’t any family? If you have family that simply don’t live close whom you are close to, do you vent to them? Everyone needs at least one person they feel safe venting to, bouncing things off of and while this group is great for that finding someone you can also meet face to face for some other human contact is important I think. Caregiving just like long term Illness itself can become very isolating often when you don’t notice that’s happening until it’s happened. It takes some energy to correct but the energy expended typically gives you a refreshed energy I find. If you are from and worked in the area at one point with a social life of sorts pick a friend you miss and seek them out to reestablish that contact. Have them over at first or just talk on the phone to start and then set into motion a search for relief so you can go somewhere else together or just by yourself.

I see the pickings are slim when it comes to help in your area but sometimes a little digging finds some avenue as well as stop gaps. Having been there, I know how big and depressing a job just trying to find help can be, never mind finding the time but it can be done. Depending on her actual diagnosis her doctor may be able to help by ordering an evaluation from either your equivalent Agency on Aging or a Visiting Nurse, they come out to the house and evaluate things, then recommend services and help you get them. You need a point person and some guidance on where to start. At the very least it will give you an idea of where you stand and what options you have for respite (time off), in some areas you can initiate this through Agency on Aging without the doctor. Implore the doctor but also check your States website and or simply Google aging services in your area.

You feel and are stuck, I think everyone here gets it, I know I do but hard as it is the best thing you can do is make the initiative to crawl out a little, one step at a time you don’t need to accomplish it all in one day or one week and you won’t but each little step is going to give you the energy to make another and another and another. We are all here for support!

Sending lots of positive energy your way!

Well no one told me anything about dementia or ALZ I had to find out myself. I read everything. I will tell you of my experience, in short, Daddy started forgetting things I took the car away, I put my name on the bank account, had him resign as trustee from the trust. He fell in Jan 2020 just before Covid. Feb he was in assisted/memory living. I visited him everyday 3x perday because he was practically next door. April/May he was in the hospital because I could not see him everyday I could not check on him daily due to covid and the caregivers did not check his feet (diabetes). June he was put into a group home. Meanwhile his ALZ was getting worse. The group home was great, I could see him daily. End of Nov he was bedridden, Dec he came home because I knew he was not going to live much longer. 5 days after he was home he went home! Worth it yes because I found a great group home and great Hospice personnel that worked with me.
That being said - The caregivers at the group home and Hospice nurses and doctors knew how to handle the outbursts and phobias that I had no idea that would come about. After my Daddy passed away I watch the Glen Campbell story - I'll Be Me - WOW this movie helped me understand what I did not understand and I share with all that ask about ALZ/Dementia. Know that you are not alone and situation is different yet the same and thinking out of the box is helpful.

Get a hobby I do gardening . Find a therapist or support group . I go out to eat once a week just to be around people . It is very isolating indeed .

I feel your pain I am in the same situation with my wife. Taking care of her has distanced me from any friends and I have no family. I have given up most things I like because of lack of time. Message me if you need a friend.

I feel that quite a bit lately. I'm so sorry you're dealing with this. Caregiving is really such a solitary thing sometimes. My family lives close and it's a big one yet I've never felt so alone in my life. I really, really wish there were some kind of live chat for caregivers to just hang and talk to each other when they have some free time. There used to be one but it's inconsistent and rarely attended. I feel like that could at least be some kind of connection every day with people who understand. This forum is good but real time interaction helps too.

I wish I had some answers for you or some suggestions but this is a tough one. Feeling alone is really pretty awful. You're not alone, the caring people on this forum are here but real-time conversations would be great too!

Be well :)

(If I do find any kind of chat, I'll come back and report on it!)

Pray first for peace and comfort. You’re never alone. Many of us feel the exact same way. Some seek support groups; some seek outlets such as hobbies. There’s an Alzheimer’s hotline 800-272-3900, but it may be mainly for info.

I found myself in a very dark place yesterday. Very alone and at a point where I realized (I think I already knew...) that it's going to be a long road back. A shorter term form of help was to go to youtube. I watched a "driving video" which was literally a guy driving around his hometown and filming/narrating the things he was seeing as he passed them. All of it was hands-free in terms of the use of technology while driving. He spoke in a very personable and conversational way, and it was similar to the adult conversation - except I wasn't under any pressure to respond! I could just listen to a friendly, unscripted video. I just let it play and also managed to get a few things done while it played - I was somewhat energized by it and learned a few things about a city that I've never fully explored. I realize that this will not fix the emotional/stress issues that I'm experiencing, but it did provide some relief and calm.

Ragan2545 you might consider looking into respite care so you can get a break and some perspective, if you have not already done so.
I was an only and the sole caregiver for my Mom with no other family in the area except for my husband who works long hours.
As things progress, unless there is a a quick unexpected end, it will be more than 1 caregiver can handle.
I decided to place my Mom in AL after rehab for 3 broken ribs from a fall in her home. She was losing her ability to remember and to be on her own. Both of us had expected me to be her sole caregiver in her home, but I could see that was not realistic. My thought was "what if something were to happen to me"? Who would take care of her? She would be alone and helpless! She later said to me after adjusting to her new AL apartment "I am where I need to be". Was it perfect? No. Nothing is at this stage of the game. She lived there for the last 4 years.
If you find a placement in a decent MC or skilled nursing or group home, you will not be alone in your caretaking. You can get to know the nursing staff and the caretakers and other residents and their families. There will be activities for her and you to participate in and you can be as involved in her care as you want to remain to be. I visited my Mom (post-covid lockdown) anywhere from 3 to 6 days per week and stayed with her almost 24/7 during the last 3 weeks of her life with hospice visits, private caregivers and AL staff all in attendance. I had continued to be closely involved in her care, being there for doctor visits almost always, and sometimes PT, OT visits, too. Kept up with her through and chatted with with the nurse, med aids etc... as well.
I brought her to my house for holidays, birthdays, or to the park when she was able. Her facility celebrated Halloween outdoors, Mother's Day brunch by the pool, family invites for Thanksgiving meals with the resident, etc... Support animals visited the facility. Residents were taken by van on outings to the beach, to get ice cream, to the local botanical garden where there were animals to visit with. Her eyesight wasn't great and her short term memory wasn't either. She described it to me as "we went to animal planet and I got to hold something green. It was soft. I think it might have had something like feathers." "Some man held a snake!". At the time, I didn't even know they had gone on an outing. I thought she had seen something on t.v. Lol! I found out later from the staff that she held a parrot!
I was still caregiving, but had help and other eyes on her besides just me! Watching her decline was still heartwrenching and stressful but I did not have to carry the whole load by myself and was able to get rest and take a vacation once in a while. Even then, my physical and mental health suffered as I am a fixer and a worrier and want to make everything all right. I have learned it is not possible to fix/prevent old age and death no matter how hard you try. Duh!
Please, please consider yourself and your own health in all this. Get some support in place-- neighbors, church, hobby group, geriatric care manager--anything. Call your Area Council on Aging. You have a life to live as well. I know that isolated alone feeling very well as do many others here. Some friends dropped away during the caretaking and covid years. Get mental health visits online if there is no one local.
I feel tears are a trickle (or river) carrying away the hurt, so cry away-but keep reaching out for support. Be persistent and it can get better. It can be harder for those of us who are introverts or who are taking care of an introvert to reach out.
You can private message me if you need someone to chat with.

Ragan2545: You require respite through any means possible.

You need friends - online and some "in the flesh" - to talk to regularly and get out of the house with occasionally. Please consider getting some extra help with your client/family member so you can have some time off. Ideally, a few volunteers (family, friends, members of your faith community) or paid help can give you some time off daily and more time off weekly.

One simple thing you can do to relax is listen to music on the radio. A non commercial- public radio- is best. I live near Philadelphia so i listen to several stations for news and music. On television there are many educational and interesting programs and films. Lots of How-to YouTube films too. And you can go to the library and get interesting books to read. I have always read books, it lets you escape into the life of the characters so you can relax while you’re reading. Music is very helpful. I prefer classical music, with soothing instruments but there’s a huge variety. I used to take my husband who had Alzheimer’s disease with me when i went food shopping and he would wait in the car. It always worked out well. He only left the car once and i looked for him and found him right away, i hope you will try any of these distractions, it seems so simple but you will be see how good it is to relax with your mother sitting next to you, good luck!

Call your area Senior Center or the City Hall. Every city and county has a Senior Unit. Most have Senioe Centwrs. You can call and have a shuttle come pick you up and take you to the senior center for $1 each on San Diego. Also at same number make lib h reservations at Senioe Center. $4 in San Diego. The usual senioea come and you can make friends while having a nutritious lunch. They will also have clubs at the senior center like walking, chess, knitting and so forth. The lunches sometimes have musical entertainment, raffles and education people come on to give presentations. it’s very low cost, convenient and how much you interact is up to you. Bring your Walker or wheelchair too.

also, local Meals on Wheels charge $4 a meal in San Diego. The come on person every day that you order food. You can order lunch and dinner or just lunch. They only deliver to you each day if you can answer your door. They will not come in but they give a very nice hello and a quick chat to ensure you are ok. It breaks up loneliness. My Mithet only gets it three days a week which is the minimum. Bay Area San Francisco only shipping’s and delivers meals from Meal's on Wheels in a big biz once a week ao that is not as friendly but you will get premade healthy meals at a discount. Every area is different.

Also turn on the radio. Even basic A’ and FM have news and music. Talk shows also help to o. You thr mind so one doesn’t feel as lonely.

call your City or County for other Senior programs.

You are NOT alone in your situation. Others are with you in spirit across the world. Take comfort in knowing you have unmet friends in your same position. It’s so unfortunate yet there are some types of diversions.

Good luck to you. You sound delightful and courageous for asking. Cheers to YOU.

I forgot to mention in my original response - Respite care in San Diego charges $175-$275 a night after you get a doctors to sign off that you are able to go to a respite care location that is essentially assisted care. Some requir minimum of 2 weeks and Bayshire in Carlsbad has a $4000 deposit even for respite care. They say you get most back pro rated at end of your stay but that’s very pricy.

New financing is available for assisted care if you have a physical or mental challenge. There are four programs under “Pacer”. You do have to switch to Pacer insurance. They pay for a large portion bc a mental or physical struggle is. Medical issue. You pay difference albeit you have to spend down your assets. Medi-Cal in CA recently increased amount of money you can have in assets to qualify a lot and you can own a car. Look up that online to finance assisted living for more social life.

again, good luck to you dear.

There are some supplements Ingive my 75 year old Mum that really help her. I give her DHEA calls mind. That really helps her in late afternoon evening. Also, magnesium supplements at bedtime help calm the body for my Mum as do her sleepy time tea. She is also on generic for “Seroquel” a low dose taken after she is in bed. It too calms the mind, reduces/prevents hearing seeing things in the night accd to her doctor. I am not a medical doctor just giving my experiences for my Mum. On a big take out that day, she gets DHEA to calm. 5 HTP and Gamma are also natural supplements thst help calm mind but 5HTP can suppress appetite which is problem if low weight. These except the Seroquel are all natural online on Amazon.

her regular doctor prescribed Seroquel. My mother in laws doctor also prescribed same so a mental health doctor is NOT required this medical is so commonplace in the elderly.

Request telephone or video appt for your mother and or e-mail doctor thst this appt and medicine is time sensitive to reduce her suffering. You have to be pushy to help the one you care for. This helps you too as it reduces your duties to address middle of the night issues.

You need to find time for yourself and carve out time, preferably at least once a week, for self-care. Going for a walk in the park, attending a Meetup type of event in your area to meet people with similar interests, getting a one-hour massage/facial/mani-pedi, or whatever will make you feel good. Because there are so many more times during the week when our aging parent will make us feel stressed, angry, frustrated, and sad.

I lived in a high-cost-of-living area once and would never do it again. That was even before I had to deal with my aging mother. Moving to another city or state isn’t easy, but sometimes it’s necessary to have a better quality of life for yourself and your family. You’ll always be stressed if you’re financially struggling or unable to get your aging parent the resources you both need to stay sane because it's too expensive.

It's too bad that AgingCare does not have Meetup type events in North America. There should be caregiver support groups in your area. The one in my city meets around once a month. Online forums help because it’s good to know that other people are going through the same challenges, but nothing is better than being able to meet people in the flesh who are a part of your community. Good luck.

Usually the Alzheimer’s association has course called The Savvy Caregiver it’s a 6 week course and then you can join a support group - The Alzheimer’s association in Brewster has the courses . Joan Halifax has courses for Caregivers at her Zen center at Upaya zen center by Donation - Sigrid Olsen has a sharing circle ⭕️ on Mondays . Meditation on Tuesday’s she is a designer and the classes are free .