Is anyone lonely as a caregiver? I am. How do you cope?

Yes Mamabear there are more than a few people on here that are the same or near the same. Myself included. No family. No friends. Wife with dementia and aphasia and nearly everyone of her friends gone for one reason or another. No phone calls from anyone. Only mail is bills or junk. Can't really take her out since she has reached a phase that makes her argumentative.
I feel that I am alone, even with her in the house with me. No one to talk with. Neighbors only wave now. Haven't heard from any former co-workers in nearly eight years.
The only person I can talk with is my younger brother 2K miles away and he really isn't much help. Three nephews that I never hear from and a niece I don't want to hear from.
Other than a few videos of Teepa Snow, no training. Always get good grades wishes from the DRs. and nurses, every three to six months.
Just wondering if you may have tried to locate any support groups in your area? Many are or can be very helpful.
Have you ever hired anyone to tend to your LO while you take a day off? Or looked for volunteers in your area that might be available.
This is a rough and usually a thankless job.
I wish you the best .

hi mamabear. you stated it was inappropriate to talk to you kids? are they still young?
can they offer some support for you and give you a little time off? have you checked your local aging and adult services to see if they can offer you any help/services?
hopefully you will get more responses keep checking back.

HI.. .I dont think its inappropriate to talk to your kids if they are old enough either and a support group ..even this one is a great idea. I think alot of caregivers or people that are basically shut-ins get involved with the internet. They become gamers or blog ..I sometimes go on something called SecondLife where alot of people from all over the world go. Yeah ok its fantasy but when reality is this hard .. Fantasy can be a real release and relief

Hello Mamabear, you are not alone. I care for my 93 year old mom, and know how you feel. Caring for a beloved one in this condition is a scary, lonely path. Relatives and friends part their own ways when you feel most lonely. Your beloved one may be too tired, and is not the same person any more. So you are left alone to make daily decisions, while you may not be certain if they are the right ones. At the same time you are mourning for the person, the love that slowly drifts away. When I feel really discouraged, I think that God, or the soul of our beloved ones, is still watching, and we have a goal, a destiny to reach. You are not alone, as God's blessings are with you for doing what you do every day, tiressly. For putting on a brave face and keeping up the care. There is nothing more noble, more loving, more superior in this life, as you care for someone who may be too sick and exhausted to understand. I am also very sad and tired, but your email made me feel better. Finally, we are not alone. And everything that we do matters. virtual hugs ...

CrazyMama, Oldsailor, Lilyblue,
You may feel lonely, but you're not alone. We have each other!

Let's start a discussion thread about any and everything. We can talk about what we are thinking, feeling and doing. Any random stuff that drops in our heads. Big stuff, little stuff, links to good videos, funny ones, informative ones, silly ones, funny animals, or whatever. Random thoughts, questions about anything, like how to get rid of an opossum in my yard? Grrr......Cooking, hobbies, movies, jokes etc....

I think it will be fun!

Hi Mamabear and Everyone,

Mamabear...I am right there with you. When my honey first had his strokes I had to keep hold of his jacket when we were out or he would have stepped out in front of a car ...like a three year old. After 13 years he is at about age 16-18 (he is 66). At first I grieved the loss (where he could not see or hear it) of the man I fell in love with but steeled myself for the long haul. All went along pretty well even with his heart issues until last November. I began to feel lonely as we could not talk even as we had after his strokes. Everything set him off. By February (after his surgery to replace his defibulator with a combined pacemaker/defibulator) he had become verbally abusive and downright mean. (not physically). I have never felt so alone though he is here at home now. I do not want to be around him as after he threatened me physically while he was rehab it made me wary and not as open. I have learned to put a barrier up though he is not verbally abusive any more...just snarky occasionally. It is hard to battle the loneliness. Coming here to this forum has been my life saver. Today he told me not to make any appointments for his care without his say so... he said he has a say in it. Yes he does, so next time his providers call to make an appointment I am going to hand the phone to him and let him deal with it. Don't think that will work out well with him doing it but oh well...._____ happens. We have no family close and I hesitate to talk to my daughter who has more on her plate than she can handle. When things were at its worst I did clue my honey's brother and SIL (they are like a brother and sister to me too) to what was going on. They try to come up once a month now. But cannot talk to them with honey around as though he swears he has hearing issues, he can hear every word I say even if I am on the other end of the house. Ugh.

Pepsee...great idea on the discussion thread about any and everything. Please let me know when it is started (and I will watch for it).... sounds fun!

Dusti, I always love reading your words. You're such an amazing lady! Just wanted to tell you that😁

Hi CrazyMammaBear,

I am recently going through the same issue of feeling lonely which causes severe bouts of depression accompanied with caregiver burn out which often turns into reoccuring episodes of extreme isolation and existential crisis. (interestingly enough, I recently posted a question revolving around this topic.) Generally the way I would normally cope involves tons of smoking American Spirits menthols and listening to hours and hours of music. being outside at night in the dark helps me to sink into something else in a way, something positive and deep. This also influences my creative insight and causes me to start my drawings, write, and read into my books harder. I am also currently looking for an option for school as I am 22 and want the chance to further myself in my life.

I Am Not Alone
by Kari Jobe

When I walk through deep waters
I know that You will be with me
When I'm standing in the fire
I will not be overcome
Through the valley of the shadow
I will not fear
I am not alone
I am not alone
You will go before me
You will never leave me
I am not alone
I am not alone
You will go before me
You will never leave me
In the midst of deep sorrow
I see Your light is breaking through
The dark of night will not overtake me
I am pressing into You
Lord, You fight my every battle
Oh, and I will not fear
I am not alone
I am not alone
You will go before me
You will never leave me
I am not alone
I am not alone
You will go before me
You will never leave me
You amaze me
Redeem me
You call me as Your own
You amaze me
Redeem me
You call me as Your own
You're my strength

Hi CrazyMamabear,

Although I am no longer caregiving as my mother died from Alzheimer's here at home, I completely relate to what you are going through. There is no cure but there can be momentary relief. These include going to whatever appropriate support groups you can find and with which you can relate. All the ones I know of meet monthly but on different days. Become a regular at a coffee shop and talk to other people. Call your local Area Agency on Aging and get a social worker you can talk to. They do have some mental health services for younger people and this is your mental health on the line.

I have no idea how old you are, but I'm guessing you are young because you say it is not appropriate to talk to your children. If they are adults, I don't understand that because after all they are family, but if they are still children, that could make things seem even more isolating.

And of course you can spend time here and get a lot of support.

Good luck.

My parents/parents in law/son died over 20 years ago and trust me ... I wish this were available then even tho my son was alert till the day he died.

I cared for him here. The others were in facilities.

Sometimes family members can be the worst in terms of support. I have been taking care of my mother for over 9 years (handicap and dementia). The only help I get is from healthcare agencies. My family members never come around and the only way I get through it is to remind myself that everything happens for a reason. I believe that God wants me to take care of my mother even if I sometimes get frustrated. God rewards us is His time.

My friends don't understand therefore they leave me out of invites because I can not attend them.

What I do to keep my spirits up is get into a hobby. Work out on my Pilates machine because you have to be strong in the mind and body to take care of love ones. I pamper myself by purchasing things like an adjustable bed, one for mother and one for me. Read magazines, take soaking baths. Eat healthier foods by adding more fruit and veggies to my daily meals.

Find your joy...no one can do that for you. If taking care of a love one is the situation you are in at the moment remember...its only for a moment. It may seem like a life time so change your thinking. Stay positive. Wake up and feel good about your day. We all have choices, make yours a good one.

Very lonely. Caregiver, full time outside job w/ overtime. My husband is on hospice care and is also disabled. He has always been a bit difficult, and now more so; combative, accusatory, self-absorbed, and totally unaware of how exhausted I am. He is only 66, and striving to live as long as possible, even though he has very little quality of life and lots of pain. I get that. 66 is too young! He was just in the hospice facility for a few days and I so enjoyed being by myself. Felt guilty feeling that way, but it is what it is. He is very demanding. I do feel alone much of the time, but I do know my Source and to Whom to go, and I go often. "Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need." Hebrews 4:16 NKJV Our daughter helps as much as she can, but with a full time job, two children, whom we adore, a house with an AirBnB, her life is also quite full. I love this forum as I feel much less alone. I also have no car, so getting around on public transportation is time consuming, so I seldom do that.

Know how you feel. I sometimes cry also when problems sometimes get the best of me. I miss the life my husband and I once had and memories flood my mind with the times we had together. There is no one else who can take care of my husband so I keep going on, paying bills, shopping, cleaning the house and keeping up on his meds and medical appointments. I get the impression from his medical doctor and specialists that they are disinterested in his care because of his age and ALZ. It's like, "What do you expect and there's nothing we can do". I know that but a little sympathy would be nice. Or at least, fain interest in what I am telling you. My prayers help at the beginning of my day but by the close, I feel tired and so alone. So tired.......

My mother had me when she was 40 so I am caring for her much earlier in my life time than I expected to. My friends where out drinking and hanging at the beach and I’m washing my mother’s back side. There is no way for them to really comprehend or be supportive, so yes often I would feel very alone or angry for putting my life on hold so early ect. Her close friends don’t call or come by or take her out. None of her family lives in this state and my brother is always busy. The thing is, I love my mother, she was always there for me and no matter how lonely I feel some days, it can’t be any where as bad as she feels and if I can do anything to help her through this terrible time in her life, I want to do that. Once I was able to really accept my new role and stop pining for my freedom, caring for her felt less of a chore and more of a privilege. I am married now and that helps bc my husband is so supportive. I sat my “busy” brother down and gave him the, “she’s your mother too” talk and now he takes her over night every other week to give me a break. Finding support in a forum like this or a local coffee group or walking group is great. Find a way to get respite once in a while. Many insurances will cover for someone to watch your mom for a bit so you can do something social. Since I’m home all the time with mom I’ve started hobbies around the house. My newest one is a garden on my porch. Try to do social things with your mother, it will make you feel less shut in and it is good for her as well. My mother is not walking so getting her in the car is tough, but I can get her in and out of a wheel chair so we go on a walk everyday. I push her around the block, show her flowers and talk to the Neighbors. We met a women on my street who is also caring for her mother so we exchanged numbers and now we have each other for support. Having music time together or baking, anything that takes up your day together in a positive and stimulating way. When mom was more mobile I would drive us to the mall and wheel her all around there. It is air conditioned and indoors and lots of colors and stores and people to watch. You are not alone, we are here.

Yes, I relate. I've been living with loneliness for 15+ years. Our adult kids are a wonderful help, but they also love their father a lot and feel very protective of us both. For those who don't understand why speaking to family and friends who love us both is not ideal think about it. For me to say, I'm lonely, feeling angry, missing romance, sex, etc... hurts them. It hurts because they don't want to see me that way. They then feel obligated to choose sides, as if their are sides? Anything they do to alleviate my pain, feels like a betrayal to their father. They are struggling to deal with their fathers injury and resulting cognitive disorders. Even though he has no idea who I am, is well cared for and obviously loved, me, indicating that I need more, comes across to them as disloyal, even selfish. I've kept things very open with all my kids which isn't easy for us at times. They respect my choice to buck the system and have a life outside of care-giving. Respecting my choice doesn't mean they are in agreement with it. When our conversations get into the hard stuff, or uncomfortable "all about me" stuff I can see them struggling. They are intelligent, open minded, adults who love me and their father. Yet, they still carry, deeply embedded in their psyche, the societal vision of romantic, sacrificially loving marriage vows to be honored at all costs and saintly wives who find happiness only in service till death. It's what society honors in meme's, movies and songs. If I wish to save them pain, I must keep my "disturbing" ideas to myself as much as possible. Most of our friends vanished, the few who keep in touch do so from a distance. Humans tend to avoid pain and seeing him as he is now is painful. I don't blame them, I get it. After 15+ years of caring for my spouse, my conclusions are, society allows only two options for a care-giving spouse. 1.) I can be the storybook, saintly, honor your vows "till death" wife of songs, picture postcards and heart rending meme's and slowly die away behind the facade. Or 2.) I can take the, now acceptable, "out" and "understandably" but "regretfully" place my hubby in a care home. After which I may resume my life with obligatory weekly visits to my spouse. When I publicly declared that I was going to choose another option of my own making, society had a collective hissy fit! I was, and am continuously, bombarded by a stream of holier than thous, who find my option to have a life of my own while care-giving, repugnant. Those armchair saints, feel a deep need to "set me on the right path", "for my own good" and for "my husbands good". Funny thing is, those who shout the loudest help the least. Hang in there, I hope you find a way to peace that works for both of you.

CrazyMama,
It's me again. I just realized why you feel it is inappropriate to talk to your kids about how you're feeling. You're caring for their Dad and I'm sure they don't want to hear you gripe or complain.

I get it. My youngest son will be 20 on Friday, he absolutely catches an attitude with me if I even make a face or show any signs of impatience with my Mom. He and I can talk about anything openly, from sex to the stars in the sky. But don't say one negative word about his Meema. Lol.
Hang in there!! 💜

GOOD FOR YOU FAERIEFILES!! 👍

MamaBear - yes, it is very lonely. My wife is handicapped and has dementia and beginning Alzheimers. I am care giver, cook, lawn maintenance, laundry expert, and chauffeur to doctor's appointments. I have a wonderful church family whom I never see outside of church. I am old on the outside, but young on the inside. I am surrounded by people yet terribly lonely. At the same time, I feel guilty about feeling that way. Our local grocery closed, so I have to drive 20 miles to the nearest grocery store, which means I have to leave her home by herself. If it wasn't for the Lord, the little men in white coats would have probably hauled me off long ago. I feel sorry for all of the people in my position but I'm glad to know that I'm not the only one.

You are not alone. I feel so alone and lonely at times. One friend visits about every 10 days and emails daily. Others email but rarely to never come to our house. I pray, read devotionals and the Bible every day. My husband is bedridden and can barely talk anymore. I try to look for things to be thankful for.

I am wondering why you can not talk to your children?
Even young children are tuned into emotions, stress, anger, fear. If these are not explained they can be confusing. If the kids are older they should also be included in conversations about what is going on.  And you can ask the kids for help even young ones. 
You need to find a support group.
Another call you should make is to your husbands doctor and ask for a physical therapist to make a home visit to assess what you can do, what you're doing properly and what needs more instruction.
A few questions for you..
Is your Husband a Vet? The VA may be able to provide support as well.
Does you husband have other medical conditions? Is it possible that he would be eligible for Hospice? You would get support from a CNA as well as a Nurse, social worker and if you need a volunteer that would come in on a regular basis so you can get out for a bit of time by yourself. It is worth a phone call...

If you have EVER had anyone say.."if there is anything I can do let me know"....you need to say something.
People want to help but they don't know what to do unless you tell them,
Next time someone utters those words say..
Ya know I really need a gallon of milk and a dozen eggs next time you are at the store.
I really need someone to talk to would you mind stopping for a cup of coffee Wednesday morning, I have time around 11:00, I need to catch up with whats going on.
I have a Doctors appointment on Thursday at 3, could you sit with Bob for a bit, he loves watching Jeopardy I should be home by the time the News comes on. (Tell people that they would not have to do any direct care, just talk, read the paper, watch TV...)

And if you don't have a Caregiver it is time to hire one.  Delegate some of the work. You might only need someone for 2 hours 3 days a week or you might need more but even 2 hours is an immense help.  

Another doctor call to make is to your doctor. Make sure your doctor is aware of what is going on, your emotional state and how you are feeling. If you need or even if you don't think you need it as if seeing a Therapist might be helpful. Always good to get the opinion of someone else. No harm or shame in getting a little pharmaceutical help if it is needed. (antidepressants or anti-anxiety medications can help even if the unopened bottle is there "in case you need it" ...{I can tell you I took 2 pills from the bottle and just knowing it was there helped} )

Yes, I was lonely as a caregiver because I had to leave my home, my family, my life, my pets and my state and move in with my mother in another state many, many, many miles away. How did I cope with being lonely? The answer=My bible and GOD, for without HIM I would surely have failed.


Isaiah 41:10 

"Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand."

Smeshque: That is beautiful. Thank you for posting that lovely ode!

There is no real answer, just things that might help a little. Here are a couple of suggestions. Most places have a visiting home library extension from the public library, with magazines and books and authors you can suggest. If you have never been a keen reader, give it a go for three months. The more you read, the quicker and easier it becomes, and the more you enjoy it. You can enter other people’s world that way, and stress less about your own world.

Second suggestion: force yourself to take up a craft that you can do at home, and that has an active craft group locally. Ask for advice on how to get started, books to teach you at home, what gear you need, choices that are easy (my personal advice is don’t start on painting, it’s too hard). If you can make the contact, many craft groups have people who are not so house-bound. They may have one or two members who will visit you occasionally to see what you have been doing, and show you their own work. It will be more enjoyable for them and for you than being focussed on the (very real) difficulties you have all the time.

And yes, have something ready if someone says “if there’s anything I can do just let me know”! Best of luck.

Hello CrazyMamaBear,

First off, how are YOU today? Did you take care of yourself today? I hope so.

I am also a fellow caregiver, I take care of my dad. I understand well and fair how lonely it can be. I understand stressful and worrisome.

What the hospital did to you, was not right at all. However, some hospital offer classes. If you still want them, also a quick online search.

Another thing is, I agree with you it is inappropriate to talk to your children, especially since you are taking care of their dad. As someone, who was a parent's counselor - it isn't a good situation for a child to be in. So, please don't do that. However, you should consult in your friends or seek a local support group.

Have you talked to your doctor about your situational depression - see what more they can do fore you.

I hope you are well, please take care of yourself.
Ana

anabanana02...
I have to disagree with not talking to the kids.
I have mentioned here several times my Mom died when I was pretty young, 11 years old. NEVER did the family have a discussion as to what was wrong, cancer, how serious it was, very, and what would happen. As an 11 year old (my sister is 2 years younger than I am) I have a very vivid recollection seeing my Mom walk out of the house for the last time..She had a towel over her face and she was vomiting. We went to school that day and she went into the hospital. We could not go see her, children were not allowed in the hospital "way back when". We could stand at a certain point in the parking lot and we could almost see her waving from some window way up high. Was it her?..I will never know...
My Dad got sick a few years later and again never discussed it or what would happen to the two of us. He died 4 years after my Mom.
Very confusing times for my sister and me.
Would things have been easier if things were discussed? Probably.
After my Mom died we did have Grandma living with us but she also was ill. We, Dad, my sister and I took care of her. At least we did the best we could as kids but we learned a lot watching my Dad care for her. We learned compassion, caring for family, we learned a strength that I do not think we would have developed if it were not for the circumstances in our lives during this time.
I learned as a 12 year old how to put a meal on the table between the time I got home and playing out side for a bit.
I learned how to fold a fitted sheet of any size by myself. (You would not believe how many caregivers I had to teach that little skill)

So I stand by the advice to talk to the kids. No matter their age. But yes be aware of the age and what they can handle. They know something is going on. Knowledge is better by far than what we may fear.
Just like a talk about sex ...tell them what they need to know and tell them what they need to know when they need the information.
And if the "kids" are older they should be kept informed.

Hello Grandma1954,

I too, learned at 12 how to put a meal on the table. I'm only sixteen now, so I understand how much of a struggle it is.

I didn't mean not to keep the children informed, of course they should know what's going on, how they're father is, and how they can help if old enough. What I meant is don't let the children be a counselor.

I agree, that depending on their age they should help. Whether its cooking, or running an errands if old enough. Even if they just stay home with dad for a while so that CrazyMamaBear is able to get out.

I didn't mean for them to not be in the know, for them to just be clueless about the scenario. Just that, they shouldn't be their mother or father's counselor.

Sorry for any confusion,
Ana

Unless you had chosen nursing as a profession I don't imagine you ever envisioned caring for anyone in the ways you have had to care for your husband, people can relate to helping someone for a few days or weeks of an acute illness but the continuous burden of years of care can weigh you down in ways they can never imagine. Even the little bit of training you received from the hospital staff is more than most of us ever get, we are all just amateurs stumbling from crisis to crisis with no end in sight.
I spent years caring for my mother at home and now in a nursing home, although I always considered her a good friend losing her to dementia can not compare to the heartache you must feel having lost your spouse, helpmate, other half. No, outsiders can never understand how completely your days and thoughts are bound up with the needs of someone else, only those who have been there can understand. Welcome to AgingCare, we are a group of individuals from around the world and from many walks of life but we are all caregivers willing to listen, support and befriend those like you who reach out.

Ana...
Thanks for your response and you are right that kids should not be a "therapist or counselor" to a parent, grandparent or any other adult.
And at 16 I bet it drives you nuts how "immature" some kids your own age are. Just know that you will take the lessons you are learning now and be a better person because of them
Hang in there.

Hi Pepsee….Thanks (smile). I am just me guess you could say for better or worse. Thank you for making my day! (smile)