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

Yes, I know all of the feelings of abandonment by those we thought were friends. The learning process of this disease and her emotions, loss of language, not being able to understand what she is saying, bathing her to get it done right, her tunnel vision of completing what she sees as the only thing needing to be done while I am trying to dress her, etc.
I can say that this month was jackpot for us. I found a hair salon that does more than ethnic hair and trendy hair styles and a fabulous young hair stylist to take care of her hair and a manicurist whose own mother has dementia. She was so patient with wife and did an excellent job on wife's hands. It was just a relief for me. Almost like a day off.
Sure beats the other type of workers that have very little patients with her. Which causes more work for me and leaves both of us worn out.
Yes I am lonely with only the people on here and my brother 1800 miles away to talk or listen to.
This site is almost like "Me" time. I can relax a bit when I am here.

I wish I had done more research before becoming my mother primary caregiver. She has dementia and I thought I was wonder daughter. I am tired all the time and family doesn't understand. I just retired and have no time to enjoy it. Angry, depressed and getting fatter by the day. I want my life back. Where is the love?

Yeah the hospital people tried to bamboozle me into doing all kinds of stuff, after my mother's 2001 surgery, but I said "no way". (They have to try that, before insurance will pay for professional help). But now you have to start over & get him into rehab, (or have them send in medical support staff or respite care to help you). First get a social worker to come over, & cry a lot. Let them do their jobs finding you help. Make sure you tell them your husband isn't making progress at home, & let them give you options to consider.

Yes I went through the same thing recently with my mother and am still going though it. I feel duped but the system and my mother who. They knew I was alone too so very little training and such especially with her recent diagnosis of dementia. Unfortunately renewing Medicaid services also proved has proved to be a disaster and now I am even more alone in caring for her. You are not alone, please know that.

I also got thrust into caregiving by the convalescent hospital staff. It is just not right to be encouraged to do something so important when you say you are not able. I had somewhat of a emotional break down and told them I could not do it. They insisted that I could and talked me into it. Now one year and eight months later I am trying to get my 46 year old son who has had four strokes into a nursing facility and because he is going in from home it is very difficult. I will soon be 79 and my husband has arthritis and it is not an easy job. I love my son but I want to go back to being his mother and not his caregiver. I to have gone through all these emotions such as anger, depression, burnout, right out mad, loneliness and confused. I never dreamed it would be this hard to find a facility that would take him.

Caring for a loved one with dementia or Alz is difficult. Caring for a spouse adds a different dimention that most don't understand. Hire someone, put him in a home, take care of yourself - empty platitudes. I'm with you sister.

I find this site is good company, and a window into many different lives. It is the only one I visit, and it is a help if you are housebound. Does anyone have suggestions about other interesting ‘chat’ sites that are likely to go down well with our age group? Not so many caregivers are young trendies, so we might have similar tastes and quite a range of interests to read about. It is gives us one step to feel less lonely.

Please know you are not alone and this site helps as really great people are in similar circumstances...It is also important to have some outside connection even a chat at the store is good...If you can afford help or if your husband is homebound a volunteer visit or hired help or even meals delivered might bring some new Smiles and friends to your door.
How does one join the conversation thread Pepsee set-up? Big hugs and good wishes

My husband and I just came back from voting and I pulled this site up as soon as I got home because I am noticing more and more how little patience I have for anyone or anything! I have been sole caregiver for mom for at least 6 years. I feel INVISIBLE! I just found this site a couple of days ago, I don’t find it extremely easy to follow, but I do my best. I know people care about us, but until they have walked in our shoes, I just don’t think they can relate, or in a lot of cases, they are afraid they may be asked to do something. I hear you! Isn’t is absurd that we have to talk to strangers to feel some compassion? That is what I have experienced, I thought more of the world, but it just isn’t even that way. I try not to be negative, but this is really just a fact from what I have experienced. When mom does eventually leave this earth I am afraid I will have NO love, compassion or forgiveness for anyone! This is not who I AM, but it IS who I am becoming! It is alarming to me but I have no idea how to cope. My husband is ready to retire and wants to move, but I can not leave Mom. I feel so overwhelmed and I know that if I don’t do for my mom, it simply will not get done. No, this doesn’t mean I am an only child, I am 1 of 5!,! None of which even talk to me! I am resented ,hated ,whatever you chose to call it. They call me her favorite, well, I am always there even if I get sick I don’t have the luxury of calling in sick! My mom gets upset with me for not spending quality time with her when I don’t have that option! I have put her first, even over myself, there is no other choice. In speaking to the social worker the other day, she asked ‘THE QUESTION’ can she stay with you? Sure, if you want me to drop dead!!! I feel guilty enough to know it,hope I never have to decide for her to go to NH, but dang, I am only HUMAN! As it is, i used to do Quilting from my home to bring in income, which made me available for her needs, which cost me money when I wasn’t working, now people have seen it effect my ability to get my work done, so after 13 yrs, no one calls me to do work because they think they bother me! My family thinks I am rich because I worked from home, quite the opposite. So it has costs me an income, if I get a job, who will care for her? I get nothing but criticism from siblings no matter how nice or how angry I get, Toxic! So I have stopped worrying about them and what they think because they offer nothing but more headaches just trying to keep them off my back, I just can’t keep the pace. I have to force myself to separate their issues from. Y own so I can focus on doing what is best for her, without losing it on her🤪no problem,right? Thanks to this platform.hugs to all!

Mamabear…..I so relate to your post. Caregiving is scary and it was not fair what the convalescent hospital staff did to you. I was lucky in a way that I had cared for my Dad (he was in a NH but I was there at least 3-4 times a day) after he had his stroke plus I have had strokes (2 major and 12 minor /TIA's) so when my honey had his stroke 13 years ago I knew what to do. I was more prepared than I would have been had I not been through this. But when his heart started failing last November, I was at a loss. ( he has had heart problems for the last 27 years) I knew what to do after heart attacks, but the changes in him and edema that set in scared me to death as I was in new territory and felt totally lost. Thank heaven that when he went to the hospital and a rehab facility it gave me time to find myself and kind of get it together. But I still find myself lonely, angry and resentful at times as now I cannot work as I have to be here 24/7. So I am trying to start my own business and have managed to find time for myself to do my art work. I spend a lot of time in my study while my honey spends a lot of his time in the living room. Stops arguments and after he threatened me while he was in rehab we are working to rebuild the trust and our relationship though he still has anger issues at times and I have to count to 10 to keep my temper in check at times. The love is still there, but I do grieve at times for the loss of the man that I fell in love with 30 years ago. I know deep inside he is still there, but with the strokes and heart issues he has changed. All I can do is love him, try to rebuild what we had before November of last year.

Please know that you are not alone.

I cope by trying to remember that it's my life too and this life is not a dress rehearsal. I try to make time for myself. I try to not let myself get overextended. I try to say "No" when a request is unreasonable or try to arrange a compromise so that my needs are also met.

Caregivers can become invisible.

Shame on the hospital staff that put you in this situation. I hope it's not too late to get help from a visiting nurse service. What exactly do you feel you need to be trained to do for your husband?

Hi Crazy Mama Bear,
i understand. Does your husband have family near? Give Him to them for a day. Find out if there are any adult day cares you can use. Ask one of his friends to take him to a ball game. (I don’t know the level of care he needs but if the staff gave him to you to take care of with no help I’m sure they can manage a few hours.
I was blessed that my husband had four friends who kept visiting him after his stroke. We had 3 children, 13, 11, 8 He was physically fairly well off but had dementia. Enough said. You know.

Hugs and kisses to my fellow caregivers. I love you and God loves you more. 🐣🐣

Hi Pepsee, How is your Mom doing? I havent't adjusted too well to the new site. How does one find your coffee break forum? Great idea by the way. Am not that great at this stage of my life so learning new things is not that easy. I get brain overload and frequent headaches but I would like to try to find your new site.

Hey my fellow lonely caregivers, I did make the discussion thread! It's called
** Caregivers Coffee Break**
Come and hang out when you feel lonely! ❤️

I spent 6 years taking care of my mom. She was totally self absorbed. I had no help from my 2 brothers. There were numerous problems with a niece and nephew stealing from me and their dad stealing from mom. In the course of all the reporting to the county sheriff, I became friends with one of the detectives. Once I made up mind to leave, he was instrumental in helping me make move arrangements and getting everything else done. He had been a full time caregiver for his mom and understood the isolation.

Good morning Mamabear! You are not alone. I hear you loud and clear. Welcome to this wonderful support group. I have been on this journey for 13 years with each year getting harder and harder. My husband had a stroke and now dementia. I have no answers just prayers and support. My salvation has been God, walking, my work and my garden. He is still capable of being left alone for a few hours a day. I am a preschool teacher and work only 5 minutes from home. They are very flexible with my hours. Need the money and diversion. Had to give up everything else because his dementia is so unpredictable. Can't get away to visit my grandchildren or trips with my friends. Three of my four children live out of town. I get very sad, resentful and hurt many, many times. I have learned to work through those emotions as best I can. I try to be grateful everyday for something and take each day as it comes. I am definitely grateful to the wonderful people who respond here. Mamabear, you are not alone. We have felt every emotion you are experiencing. Give yourself a pat on the back for even trying this caregiving thing. Thinking of you.

I think feeling lonely is normal for caregivers. Often times, I want to just keep driving and not look back. At times being lonely gets really bad and for lot of us, yes myself included, family and friends drift away. This web site is a great thing to have and it does help, but there are times when things can really get a person down. I just wish non- cargivers would understand more. If I had more time, I'd read more tings on here because they do help, my time is limited. Good luck and maybe you will be able to make or find some pen pals on here or something.

I’ve been looking for a caregiver support group, and am very happy I’ve found this one! 

Margaret...great post. Reading, hobbies, crafts and anything a person enjoys can be both a life and sanity saver. My painting has been my sanity saver (I lose myself when I am painting though all are done on the computer) and if I didn't have a fur baby that looks for things to get into I would probably get back into my wood carving. Reading has been a way to transport myself into another world and adventure for even a short time. I read every night before I go to bed. This forum has been amazing and I would not trade for all of the great people I have met here. I have yet to join a craft group or see a counselor as it is not feasible at this time but that is on my short bucket list. Thank you all for being here.

Cwillie...great post and well said.

Oh Betsysue...my heart breaks for you. It had to be so hard for you. So glad you are here.

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

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.

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.

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

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 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

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.

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