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Hello, I'm just feeling very blue the last few days. I care for my father (82, with severe emphysema). He's having a pneumonia exacerbation today and is back on antibiotics and is sleeping most of the day.

With Easter tomorrow I'm feeling forgotten by people around me and it's making me feel blue. Dad and I had plans to do something together after church services, but he's having a bad day and we may end up having to stay home. As a busy caregiver, I sometimes feel invisible. Everyone depends on me that I'll take care of everything, but no one thinks of me and my needs. I can see people pulling away - invitations stopping, no cards or phone calls just to see how I'm doing or offer encouragement to me.

How do others handle the loneliness and isolation that can come with taking care of someone who is very sick? How can I get people to understand what I'm going through?

Thanks, I appreciate your thoughts.

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I know many seniors need nursing homes or assisted living but how about seniors who are well in the mind and mildly disabled just needing meals cooked, bed made, laundry done. Who can no longer make home repairs and clear the snow or do the lawn. Many go to nursing homes for just that, who don't need any personal care having mostly dementia patients around them. If these seniors can't get medicaid so will have to pay for these very costly nursing homes could do much better if they were former cruisers . How about living on a cruise ship with seniors who have healthy minds and just mildly disabled or just old.
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I am in the same situation. My husband died in 2005 and my Dad died also. Mother wanted to build her dream home on the land she inherited and for me to move in with her. This was a mistake. Her dream home is my nightmare. The house is way to big as well as the yard. It is so far back in the woods and hardly any neighbors around. It is a long way from grocery stores and other places. I am a people person and this is driving me crazy. She says I will be her age someday and will feel the way she does. She enjoys her house but she doesn't have to take care of anything, I do. She doesn't give me any credit for what I do. She says she takes care of herself just fine. But I do all that for her. She doesn't want me out of her sight or go anywhere. Everyday is the same. My dreams at night are better than life itself. Everyday is the same. I just wish I could be on my own without her. This thought makes me ashamed of myself and feel guilty. I know at 82, she may not be around much longer and we once was so " very" close. Then again she may live to be 100 and outlive me, who knows. I feel verrry lonely and desperate at times. I feel smothered. When I do get to go somewhere, I am like a child on the playground and when I get home, it feels like gloom comes over me. Does anyone feel like me. I just don't know how to get my life back again. I moved in with her when I was 49 years old. Now I am 58. My life is passing me by quickly. Anyone who can offer me some ideas, please do.
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How do others handle the loneliness and isolation that can come with taking care of someone who is very sick? How about someone who needs something constantly? It doesn't matter that the person loves you and you love them, that you also love God, I am all used up. I have been doing this for 10 years. I had my fortune told and the lady said I would live 20 more years - I can't stand the thought. I have lost my friends and my money and my hope. There are no good days, just some are less bad than others. My sibling is just fine, though, removed from it all.
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lets down about a half dozen zans and go trike riding.
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Let´s not lose our hope in a better future. Cecilia
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This is a great place for you come and be cheered on.

Take away from here knowing that GOD makes us givers strong and ensures the blessings are endless.

One of my Home bounds (94 years+) is praying the Rosary pretty much all her waking day. She is finishing her life... Not praying for herself... But for praying us.

Hope this give you the comfort you need... knowing what you are doing as a giver is a wonderful thing and is truly the purpose of life.

Martin
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Hey sweetie. It is good that you asked about loneliness and isolation from caregiving as I have been feeling the exact same way and kind of abandoned by my "so called friends". It is kind of hard to believe that the people that we thought cared about us are nowhere to be found when we need them or even the least bit concerned about if we (or our parents) are doing okay or not. Some people are just downright nosey and don't even care how we are doing. The only person so far that is available to me is a lady at our local careline because it is hard to talk to a stranger for ask for help that actually cares and understands and won't put you down. One good thing is that I finally got a job transcribing medical reports after graduating 6 months ago and the owner was kind of giving me a hard time. Also some of our neighbors are rude, aggrivating and noisy which makes for an unhealthy environment for an elderly couple and a burned out caregover that has nobody to really depend on for moral support. Anyway I am gonna go try to get some work done to avoid getting depressed, moody and get my mind off my problems to be more optimistic. Sometimes it is good to pick up some hobbies or things to keep us busy to meet new people and get our minds off our problems so we don't get too depressed. Thanks again for sharing as this is a good topic and nice to know other people feel this was and just hope it's not many of us. Hope things get better for you. Please keep posting on the forum as it does help so you don't feel so alone. Take care and do something nice for yourself
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You have articulated well the situation for all caregivers who have devoted themselves to a person and a problem. There is no denying the reality of your situation. What to do about is another issue:
1. It really is very important for you to find counseling, either with a licensed professional counselor, licensed psychologist, social worker or pastoral counselor. Look for an individual who will partner with you in your deepest days of chronic sorrow and be there for you when life lightens up a bit or stabilizes for a time. This kind of individual is referred to as an "exquisite witness." He/she does not give you advice (you actually know more than he/she does) and does not expect you to perform miracles either in your caregiving or self-care. This is an arm to lean on, an ear to hear your misery and a shoulder to cry on. Use it as often as you can.
2. Make a time during the day (often early evening is best) to call at least one of your children, one friend, one supporting neighbor, etc. to try to maintain contact with the outside world. Talk about anything except caregiving. Try to find something lighthearted to discuss or something interesting.
3. Join a group--any group. A book club is often very good because reading takes you to places and states of mind other than your own. Often friendships are not forthcoming in book groups, but at least you will have the structure of the group and something else to focus on besides your situation.
4. Consider taking one course at a local adult education (high school, community college or university). Many of these are given free to seniors. Concentrate on some topic that interests you and do the work religiously. Be prepared for class and speak up. This is critically important to your self esteem and identity that is being pounded into the group by medical, etc. personnel. Take your course seriously--it can be a lifesaver.
5. Once a month go to the hairdresser and have your hair cut, styled, colored or whatever will make you look better. You will feel greatly improved!
6. If you are overweight, join Weight Watchers. They have a fabulous new Points Plus program that is really doable as well as an on-line tracking system that lets you know immediately if you are on the losing weight track by keeping tabs on what you are eating. If you don't like the meetings, just run in every few weeks and get weighed, then leave. The meetings are pretty much a bore anyway.
6. Set a schedule for fixing up and organizing the items in your home. Polish the silver, organize the paperwork, dump the old junk you don't want, polish the floors with BONA and see if you don't feel like you live in a a better place. If you have either time or energy, rearrange the furniture, accessories or anything else that shows a willingness to face life with creativity and toughness.
My suggestions come from my personal experience. I have been an active caregiver for over 15 years to my chronically ill husband and I have done everything I am suggesting for you. I even graduated in 2009 from a 3 year program in mental health counseling, taking one or two courses at a time including summers. Do I still feel as you do---of course, I do. That the reality part. But I try my best to join something, learn something, talk with someone and make an effort to look good (down 12 lbs on WW). Perhaps this will work for you, too.
Be of stout heart and take control of your situation.
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Naheaton: I am so sorry for your loss. I didn't realize how serious your Mom's last battle with cancer was. My condolences.
I am also sorry that your MIL has had dental problems. Went through that with Mom in the dead of winter last year. She had partials installed and other dental work as well. It was more taxing getting to the docs offices than the actual work was. She is a "toughie." But her quality of life has improved because the partials work fairly well. I hope the same for your MIL.
And I know what you mean about self-pity. When seniors get older, and their world starts to shrink, they become very much, "it's-all-about-me." I have to remind Mom that, despite all her health challenges, she really is doing pretty well and that there are so many others who would gladly trade places. It works for a while, anyway.
Take care of yourself. What a good daughter and dil you have been. And I know your mom was a person of strong faith....she is in a lovely place right now.....Lilli
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I am so glad to find your posts. I totally understand how you feel...or I would not have been looking for some comfort tonight. This whole process is very, very sad but I wouldn't trade it for anything. It comes with many blessings. So many times I feel so alone...so tired. Thanks for the respite tonight.
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Lilli,
My mother-in-law had to have her two front teeth pulled out last on Monday cause of periodontal disease. While I felt really bad for her, I was also dealing with my own mom who was dying of cancer. Mom died Wednesday after a rapid decline of only 3 months of really being sick. So on Friday I took my mother-in-law back to the dentist to get her new bridge with the two new teeth put back in her mouth. On the way out of the dentist office she was complaining about the appliance etc. and feeling really sorry for herself. I had just HAD it at that point with mom only being gone 2 days before, so I asked her 'Gee, I wonder if my mom would've rather had her two front teeth pulled out, or DIE OF CANCER?' She really liked my mom and she admitted she was being a baby and how sorry she was about my mom etc. Point is, I think we all need a reality check once in awhile to put things into perspective. There's always someone worse off then we are, it's all relative. Even though my mom died, there are people who's loved ones suffer for much longer than my mom did, so again it's all relative.
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Thanks all for your kind words. As it turned out I ended taking dad to the ER Saturday evening. Even though his vitals showed fine I could tell he wasn't fine. He was admitted and his blood gases showed a build up of CO2 which was causing the extreme sleepiness and change in him. He's been on a BIPAP machine to force oxygen into his damaged lungs and help move out the CO2. He's doing much, much better today.

As for me, I went to Easter Mass and the priest had a wonderful sermon the really hit home. He's from the Phillipines and has noticed that we in this country are brought up to be independent and not help others out. His sermon encouraged all of us to reach out to each other and help each other without being asked. He also encouraged anyone with financial problems, etc. to reach out to him and that the church had a fund that could help. I talked with him after church about my isolation and he really helped. I will be calling him this week to meet with him and see what the church can do to help support me and plan some visits with my dad. My neighbor's wonderful sister called and insisted I have Easter dinner with her and her friends. I spend several hours with dad at the hospital then did go to dinner and returned to the hospital to spend the evening with dad, bringing him homemade pie. The nurse took him off the machine so he could enjoy his pie and brought him candy and brought his meds in plastic Easter eggs. My neighbor's sister also sent food home with me so I don't need to worry with cooking and can spend time with dad. It's Administrative Professionals Week and I've gotten some nice cards and gifts from my colleagues today which has given me a boost.

I think I have to learn to trust my own judgement with dad's health. If I feel he's off, even the doctors blow it off, I need to get him to the ER and insist they look at certain things.
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This is a great thread, holidays have been such a let down the last 5 years. My Aunt & Dad both died in 2005 before Thanksgiving and my mother had her 1st stroke in between their deaths. I too have always been the one who tryed to make every holiday special, I get all exciting and make plans which always fall through. It's like my mom will have a crisis no matter how small to ruin everything. She did this before her dementia set in. You think by now I would lower my expectations or try some new traditions, but I always get myself wrapped up in the same tug of war. I feel that I have become so numb that I can't even cry, the ony emotion I ever show is anger or exhaustion. I agree with lilliput May 1st would be a great day to start a new plan of "taking care of myself." Who else wants to join this idea and what are some suggestion for things to try.
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Hi Denisenini,

This is my first holiday alone with my mom. She moved in with us in February. My husband and son went to his side of the family for Easter so it was just me and mom. My dad died right before Christmas so these holidays are so hard. We couldn't even bring ourselves to dye Easter eggs this year as my dad was the one that always loved it the best. He was so creative and fun.

I made my mom and I a rare treat of broiled scallops wrapped in bacon and a green salad. We also watched "The King's Speech." I had the volume up to 100 (!) and she couldn't hear it very well, and the light reflected off the TV, and your fireplace looks off balance (???) and........So, how was the movie? LOL

I know how very, very it hard it is sometimes to battle the blues. Sometimes you just have to laugh and know this too shall pass.
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This is my first holiday alone as my mom is in a dementia NH. She used to live with me until she totaled her car 2 1/2 hours from home and that started her "journey" (and mine) into the whole confusing hospital/NH/medical bills/guardianship mess. I was invited to a friend's house but just didn't feel up to trying to be cheerful, which probably would have been good. Just watched movies and cried off and on all day. Actually, it felt good to cry instead of stuffing it in all the time. Maybe watching a comedy on tv, a movie, would help cheer you up. I watched "the King's Speech" and that was very inspirational. Watching tv is my great escape!
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The best advice I have is to click on the Grossed Out thread on the right of this page. There you will find very similar situations to yours and you will get a LOT of support and funny stories to keep you smiling. I am afraid, in my humble opinion that you are not going to change other people who are not going through your experiences. They won't understand what they haven't been through. But give the thread a try and at least you will know you are not the only one. Best of luck.
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Lonely, Crazy for Feelin so Lonely, I'm Lonely, crazy for feelin so Blue
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I just got home from a very frustating day with Mom. I cooked a nice Easter meal (which I NEVER have time to do for myself), bought some flowers, and made a nice dessert. The whole time I was there she pushed her food around the plate, sniffed at the flowers, and whined that she was "getting useless" and begged me to stay with her overnight (a regular occurance now.) I can never have a moment to myself, I cannot take vacations without a mommy meltdown, I feel like I cannot breathe.
I think that it just exacerbates the feelings of isolation during holidays. Not only do I feel alone, but now, everyone of my holidays (which I used to love) is ruined. I am glad that others have shared their experiences today because I thought I was the only one feeling miserable on a holiday....again!
The one thing that I was looking forward to when my mom moved near us was having the chance to celebrate special days with a family member. This is NOT the way things have turned out. Mom uses every opportunity for a pity party.
I can feel my health dwindle and I cannot remember the last happy thing that happened to ME.
But I have a new plan...starting May 1st, I am creating a new regimen for myself. I want to get healthy, have a better mental outlook, and make some changes so that I am not shouldering all this by myself.
On this holiday, I am very thankful for everyone here who have become my long distance family and my unflinching, caring, support system. Thank you and bless you for taking time out of your insanely busy lives to share your advice and moral support with us all.
Take care everyone...have the best day you can manage...and please join me on May 1st for a "new-and-improved-me" day!
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I know how you feel. I care for my mom with dementia, age 88, and we won't be able to spend time with others today, Easter. I know I'll get through the day somehow, and cook dinner and take a walk or something, but it really is a lonely time. Thanks for starting this thread, it was just what I needed this morning. Love and understanding to you. ssk
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My son was very ill as an infant until he was 8. The isolation was difficult for both of us as my husband went on with his life, and the two of us stayed home. We missed many holidays until I started creating my own traditions that fit our situation. Then I started a card ministry in which I wrote two or three people each day who were also isolated. Before long, I found that people cared but just needed a little reminder that we still existed. Also, I reminded people that we cared about their situation. I did feel down and blue at times even after I started making changes but it did help. You are not alone with all of us on the site. Please write whenever you have time. Rebecca
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I wish I could tell you that the support is there you just have to find it, but my own experience says that you don't find it ,you have to purposefully build it. I was 6 months into caring for my mom (24/7) in my home when my first grandchild was born 6 hours away prematurely. The short story is that I called my "best friend" who said it wasn't really a good time for her to help. The light bulb came on and I knew that I was really in this by myself. If I want respite care I pay for it. I have a couple of backups for emergercy. But all that said it is Easter and I am home with mom, no hunting eggs with the granddaughter who is now almost 3. Caregiving does make us alone and invisible, we do it because it is the best available for the parent, certainly it affects our life, contacts etc. I hope you find some comfort and wisdom in the day and know that while no one else notices you are the whole world to your dad. Somedays it seems worth it, in my case I am not sure about today. But one day at a time, hoping that tomorrow we get back into the routine and it will be better. And there are many, many more of us sacrificing in the same way, we just aren't all together.
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Sorry that you're feeling so sad and blue....maybe you can reach out to others within your community/neighborhood. How about members of your church, or neighbors and relatives? Have you considered placing your dad into an adult day care program, allowing some free time for yourself? In order to provide quality care for your dad, you need to be good to yourself. This means making time for you to socialize, and re-connect with others. Please check out elderly resources to help make an informed decision. Good luck!
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