How many caregivers are losing relationships with friends and family?

I moved to care for my mother full time having lived alone for thirty years. I gave up my job with a company I had been with for 27 years, my home, my friends. Being in the house 24/7, I made no friends in my new location. I was blessed with two dear friends and a cousin who stuck with me through the three years of caregiving. They called me 2-4 times a month, let me vent and were my lifelines. Don't know how I would have done mentally without them.

My mother remained sweet natured except on very rare occasions. That was a tremendous blessing.

The part that was hard was having to virtually assume her identity. We watched the TV programs she preferred because people being unkind to one another distressed her. We listened to her music. We ate what she wanted, which in the last year shrunk to only a handful of acceptable items. She did not like me to eat something different because she mimicked what I did to be sure she was doing it correctly. She would not go to bed unless I did, so 8:30 became my bedtime. It was a compulsion that we go for a drive every day usually for 45 minutes to an hour. She could not let it go.

I know I was blessed that she did not turn mean with this disease and I was blessed to have my phone lifelines. And even with those advantages it still was an exhausting, demanding experience. I do not know how long I would have lasted if she had turned mean.

The family just can't take the truth. Some family members are in denial. Friends will never be there. That's the reality of it.

I was Mom's caregiver for 15 years. She slipped off her bed, broke her arm, and suddenly four sisters (I come from a large family) starting ignoring boundaries (that Mom had set up), hassling the nursing home staff, and making my life miserable, including absolutely insane accusations that I denied Mom medical care. One sister in particular was absolute out of her ever-lovin' mind with the crazy, and she dragged the 3 others (who have guilt and control issues) along in her wake. Eventually, they convinced Mom that I was unable to care for her anymore and convinced her to legally transfer her care to them. Now, they are doing the exact things to her that they accused me of doing, such as making decisions for her instead of making her feel included in her care. Mom has no say in even the small things anymore, such as whether to sit in a chair or lay in a bed during dialysis. I just keep my mouth shut. I do not want to get a repeat of batsh*t crazy again.

I've just resigned myself to the situation. Mom could speak up, but chooses not to. I visit when I can, and I try to time the visits when I'm pretty sure the crazy ones are not there. I no longer trust them. I have friend to whom I talk things out when stuff happens that bother me.

It's sad, but I have learned that friends are family you get to choose. I'm more comfortable with them than my own blood. The silver lining in the whole painful episode is that I have a stronger bond with some other family members, which is something I've been wanting for a long time.

I'm a part time caregiver to my nother-in-law and live with her full time. Very, very difficult. My wife rarely sees her mother although they do speak on the telephone. My wife still resides in our Manhattan apartment refusing to move in with her mother.

Most caregivers lose touch Erin. Of course, there are different circumstances, but a 24/7 caregiver not only loses touch with adult friendships, they find they have also lost touch with reality. Communicating on topics and events in our ever-changing world becomes illusive. Most friends are compassionate and patient, but all that is left on a caregiver's plate to discuss is what they do 24/7; caregiving, What is even worse, most caregivers are unaware of the vacuum they live in.
I've been there for 11 years. Two months ago, due to my husband's continuous Alzheimer's and bi-polar decline, I had to put him in a nursing facility. I had become suicidal, didn't care one day to the next if I lived, and started to hallucinate. The doctor insisted change needed made and made soon. If you can Erin, I would suggest joining a local Alzheimer's counseling support group. Contact your health insurer. Most offer free programs. The problem with me was I had no one to watch my husband to attend counseling nor had family nearby to help. Now that he is in a nursing home, I am discovering through support groups, most caregivers experience the same resentments, exhaustion and loss of identity that we all do. Being with people that experience similar core issues in caregiving is very uplifting. There are ways to find oneself; to start liking yourself again. If possible, start an Action Plan taking a few hours one specific day a week to do whatever you like. Seriously, Erin, you must regain what you have lost. Stick to your Action Plan. You will be a better caregiver, a more interesting person to be around and surprisingly your attitude will be uplifted. You will find you have a lot to offer and talk about with family and friends. Join the local library, take an improvement course, plant a few flowers, share a long walk with a friend or neighbor, join a church group, community events. And, even though this may sound strange, how about volunteer work a few hours a week. Most hospitals, animal shelters, meals-on-wheels, etc., are always looking for help. Believe me Erin, you will feel better helping others. Your interests will broaden. As one counselor said; one must lose their past life to begin another. Transition is extremely difficult. However, transition is part of life and can be very rewarding. Love yourself first and caregiving with interests will follow. Hope this helps. For 11 years I went through and experienced every peak and valley known to man. There were days I did not know who I was, what purpose, if any, did this tiny speck of sand have in God's world, would anyone miss me if I died, would anyone care... We must be strong and willing to reach 'deep down inside' to find those answers. If you don't Erin, no one else can.
God bless. Be happy, be the person God wants you to be. Start taking one step for Erin and you will find the walk becomes easier.

I think like someone here said I lost my friends because I changed.the point of reference for me was different.

My husband is physically disabled from a stroke, but is cognitively intact. I've been caring for him at home for five years (though he attends a PACE day health program four days a week and it is excellent). His friends of long-standing, several of whom live nearby, that I had been hoping would be able to visit us once in a while, have fallen away, and they have stopped inviting us to their social gatherings. To be fair, several have serious health issues of their own, but that doesn't seem to limit their ability to get around when they want to. I try to remain a good friend and good company by never complaining about how difficult it is to get him out and wheel him in the wheelchair -- the combined weight tops 200 lbs. and there's no motorization. Then, there's the issue of public rest rooms. I'm glad he's got the day program but I have generally no one.

Yep, my siblings also ignore me and as it got more serious the more distant they became.
I've lost friends, relationships and jobs, but I'll keep going on.

I'm out of a job and have no money to pay for a coarse that will have a great impact on my rebuilding my career, but I am still going to look after my mother the same way.

I take care of my wheelchair bound mom. Between working full-time, taking care of the house, and going to grad school, I have no time, and many of my friends have abandoned me. I just can't bring myself to go out on a Friday night, I'm too tired! My brother also does absolutely nothing for our mom's care, so that's become a point of contention between us. He turns it around on me by saying that I never ask for help, but it's difficult to ask for help when it isn't offered and when he's usually traveling around the country to some event or another.

When I was the sole caregiver for my husband, Robert, I regained my connection with old friend, Alice -- with whom I hadn't been in close contact for several years. We reconnected when -- with the support of a hospice team -- I became the sole caregiver for my husband, Robert. During that period, I received an e-mail from Alice's daughter, telling me that Alice's husband had just died. We have remained in email contact since that day.

I'm trying not to let the caregiving get in the way of my life...but I find myself cancelling more and more of my activities. So we hired a caregiver for them just twice a week...`when Dad got the bill he told her not to come back as it was too expensive. He can afford to pay for it...he is 93 and Mom is 88...what are they saving their money for...their old age! Well, guess what it's here! Both are homebound now...and we, the kids, are doing everything. It would benefit him to spend down some of his money as he is over the threshold of assets for applying for VA help and Medicaid (when they need it)...He wants to give us some of the money...we have said no as they probably will have to apply for Medicaid (in TN it is called TNCARE) at some point. And it's too late to give any money away with the 5 year look back. Cannot get this thru to him!

Lathyjo; Yes I think I have some sort of depression because some days it feels like the world is on my shoulders...I'm actually going to the dr because I think I may have hypothyroidism too b/c I have been feeling more stressed than I used to be...just hang in there and try to find some 'you' time...it sounds easy, I know, but the last few days I have made a firm effort to find some 'me' time by doing some crafts and I actually had a few hours to myself and felt better after doing it!!! lol it didn't last too long but for those few hours it was peaceful and stress-free...we are just as important as the person(s) we are taking care of....peace :)

I agree totally with careisgiving - By now, my disabled brother, for whom I wa
responsible for 40 years..... and counting.... though he is now in a nursing home -

But I find that helping him changed me - I cannot identify with people who live life without a thought of needs for help, so focusing on travel, parties, neighborhood activities..... just feels like extra demands on my rare time to sort out myself, my belongings, get rest, plan for my future.

I've learned some things though - that nobody will help me when I approach at last minute, with desperation, or resentment. That's the culture. I think it is intolerant, for what caregiver will not feel frightened and need help in desperation, or at last minute, which WE find a way to make time for - which leads us to resentment, naturally.

And, when we try to turn around and tackle life enjoyments, after years of keeping our time available - what I find, is that I'm inexperienced at social planning - and panic about not using what little time I find, in ways to allow me to rest with people, or I idealize some people, like those who care well for animals, for my care has extended to that domain as well. Idealizing people means that in comparison, I can feel less-than, and embarrassed when I seem to botch up communication.

I have had to accept that my focus on care has left me less prepared for my own joys, my clothes are not organized and simplified so that i can easily go out, looking sharp. If someone says something that shows an ignorance of care needs, I want to reply right away and correct them, end up talking more than is "my" turn to fit in, and then resenting it if others say I talk too much (ya think??? after managing time for years around the varying needs of care, never chatting in relaxed ways with any peer????)

I'm learning however - ask my family for help in matters that THEY know - like one brother knows business and real estate, and he has been generous and helpful about my challenges as a landlord - even if I resent having to BE a landlord because my salary has been so low for so long.

And, last Xmas, I took a trip by myself, without disabled brother, to visit not my own generation - but my niece and her kids - so that I don't have the same resentments towards them, and I loved having them take care of me, entertain me, and listen to my stories.

In terms of my own family, I've found that if I assume that they will NOT react positively to my first request, for they are not as "on top" of the needs and priorities that I can pick up on quickly because of my close involvement - if I leave their participation open - after a week or two, I'll hear them willing to help with my request.

Otherwise, the issues are so deep, and the culture changes in society have removed the resources that our parents used to expect would stay in place, before all their children - our siblings, moved so far from home.

It's not perfect but I find that it matters for me to ask for what I want, so I'm glad I've found ways to do so, cry to myself when it takes time or adapt if it doesn't happen, but not give up on the project of informing them and asking for help - even if THAT is yet another burden for a tired caregiver. Looking at what professional could be hired and hiring them, and passing along the bill - is an important way to reach them.

Problem is that by giving our time, we ourselves are the ones who need help, and our families have not accepted that as important - they argue that we want or take too much, and too much is left vague, it really matters to document, and keep files.

I feel the same and toooo tired to make efforts to socialize and too depressed(along w diagnosed w hypothyroidism).my mother is the most stubborn difficult person in world-her own brother refused to have ANYTHING to do w her;my brother and I are doing all we can with both parents with either Alzheimer's or dementia.ive worked full time 31 years as a teacher and I won't retire until they are settled somehow.i cannot be this caretaker any longer.my stress was so bad two days ago I could only count 15 seconds all day long.My brother and I both have anxiety issues(alcoholism. Is a family disease,before these new ones.$Im trying to not feel sorry for myself as I've been the victim so often in family drama/garbage.Id like to get back to having my own life:I raised a child on my own.We are trying to not drown and to find help.

MidKid58; Wow, you hit this head on-same as what I'm experiencing...my brother doesn't do anything extra for Mom unless I tell him specifically what to do and he lives with her !!! My 17 yr old son is more supportive and willing to fully listen when I need to vent than my husband; but I don't want to cast those worries/feelings onto my son...my husband should be stepping up to the plate and be fully 100% heart and ears wide open because this is some tough stuff that WE experience...and, where is OUR caretaking ??? Who asks, and really cares, about how WE'RE doing ??? Not the offhand 'how's it going' but REALLY care ??? Yep, it's nonexistant...and my friends have surprised me very much by NOT being there...but boy o boy I was sure there for them whenever they needed an ear to vent and to be supportive about whatever they needed....yes, caretaking has made me look at the world, and people, a whole lot differently, I feel more critical and impatient and won't tolerate stupidity or indifference very well, but I feel more compassionate towards elders and everyone else; who are we to judge how people are or how they look...we don't know their story in life and it could be entirely different than what is perceived. I know I chose to be more private about personal things, and I've learned how to look at things thru other people's eyes...caretaking is a huge lesson in life and my perception is completely different than it was before i started. At times it's good, at times it's not so good...it's hurtful that my husband can't be more supportive but now I don't want it; it's not something I should have to ask for and is a sore spot with me. My friends are just my friends and I can chose when I want to see them, but I do look at them differently now and know how much I want to interact with them. There is always another friend around a corner somewhere, sometime....but know this - you are a good person giving yourself and your time to someone in need. We will grow old one day and need that same someone for ourselves.

I was fortunate to find support groups that had a concurrent session for my husband. Some of my relationships developed into very satisfying social relationships. It took so much of the stress out of taking my loved one with me because my new friends and family really understood that we were on "dementia time." Anything could happen, so we planned accordingly. For me an understanding travel partner [in my case another person with an affected spouse] has helped me beyond measure. I found my support groups through the local memory clinic, Senior Center and Jewish Family and Children's Services [JFCS]. JFCS is non-discriminatory. I was raised Protestant. Good luck.

I take time to go on dates with my husband once a week, and once a month with a loyal inner circle of friends who understand what I'm going through. This is the only way I can maintain balance in my life. As "all in" as I am with caring for my dad, I must remember that this caregiver chapter will end one day, and I want to enter the next chapter as mentally and emotionally healthy as possible.

There is always one sibling who jumps right in and the others step back and say, "Wow, he or she is doing great." It is not until the first sibling has had enough and asks for help that problems begin. "Gee, we thought you wanted to do this," or "All you need to do is ask". Then the second guessing starts, "don't tell me you are doing this or that", or "you know me I can't help with money issues", etc., etc., etc. My favorite with my very difficult mother was , "things would go more smoothly if you would just be nice to her." It took persistence, pleading, some anger and ability to know that I had done my share and then some before my other siblings knew I was serious and stepped up. Now you have to be ready for "you are crazy", "you've always been difficult" but that will pass. No one will ever say they are sorry. Slowly but surely shared caregiving evolves. If I had it to do over again I would demand a written document about who was going to do what at the get go. Even if siblings are out of town or across the country they can still do paperwork. Good grief that is what the Internet is about. When your loved one does go to long term care or even Assisted Living it is better. Alzheimer's Disease is dreadful. My Mom was diagnosed 12 years ago. The strains on our sibling relationships were awful at first but we are doing better. Our relationships will not be the same but I have an appreciation about how I can contribute without being overwhelmed. It is much easier to talk through things in the beginning that getting others to assume what you have been doing.

I have been able to keep most of my friends but just finding the time and the energy to even meet up for dinner can prove difficult. I'm sure I'm suffering from depression and I'm not sure if I'm tired and that is causing it....or the depression is causing me to feel tired...it's a vicious circle. I try to stay healthy - eat right, take vitamins, go for a walk. I also am a single homeowner and my mom has moved back in with me for about the 4th time over a 20 year period. My family does not really call - they might call HER once a week but NEVER me - never to ask how am I doing dealing with all of this? It's caused a lot of resentment towards my siblings. They have their partners, more money than I do and are older than me. They act like I'm Superwoman - even my mom's demands are downright ridicules. I've learned to ignore a lot of her comments and just go about my day. But it's hard. I have a few friends that understand because they have gone through it but the ones that haven't don't have a clue. I try not to complain because no one wants to be around a whiner. This site has helped a lot! You can whine here all you want and get a lot of support in return. I would also suggest counseling. I'm thinking of doing that next. I have looked into Assistant Living but OMG!!!! So very expensive - the only thing I can offer is a place for her to stay and to run her around to do her errands and try and get her out of the house for lunch/shopping. She's by herself all day which is not good. I'm going to try and get some kind of "assistance" for her. She can still drive but not for too much longer - she's 90! I have canceled plans when I just feel exhausted and all I want to do is go home - I know that has ruffled some feathers but oh well. Just try and take care of yourself and do something that makes you feel good. Remember you are worth it!

Just read your post "phntum" and it has hit home with me. I feel exactly the same way, in my case it feels like now that my spouse is in assisted living my sons no longer need to stop by, call etc. I do understand they have their own lives to live but a quick phone call now and than would be appreciated. I understand they have families but now I feel so alone so I must find a new way to deal with my situation. If money were not an issue I would travel etc. Somehow we will get thru this. In my case my husband has no idea who I am and is in a good facility over an hour away so a visit once a month is OK. Can you cut back on your visits? We will, I hope find a new life for ourselves.

You never loose real friends. In my case, I have a friend that calls me by telephone everyweek. She knows its hard for me to have time to meet with other people. You can keep in touch with friends in so many ways, telephone, email, Facebook, etc, if there is a real intention they won´t leave you.

....Erin, your cousin can't (her mind won't let her) compare the difference of what you're feeling to hers, she won't see the comparison of the pains, between alive and not alive .. she won't see it. Not for quite some time, if ever. She' has an empty space that can't be filled, no matter what.. you're living enslaved and trapped. Ones happening to you, the other has happened to her. Although both situations each of you are going through hurt/s each of you differently and yet very strongly, the pains are too different to try to find an in-common understanding.

Erin, if you are needing to reach her for what ever reason, if I were you, I would just very lightly suggest that neither of you try to empathize with each other ... but rather, if at all possible (and if you want to) just let each other know the other is very much in your heart and you both can respect the difference of pain to be nothing more than a "difference of pain ... but still pain.

....

On the bright side: the friends and family who are still sticking by you once you come out the other side of caregiving, they're the ones who've been tested and found to be pure gold. They're the sort who will go through snowdrifts and train strikes to spend time with you and your care receiver.

That's not to say you shouldn't or can't rebuild friendships with the others, if you still want to. But you'll know who you can truly count on.

I feel I will not truly be free to live my life the way I'd choose until mom's in her grave, when I hopefully can mentally relax. I know she's well taken care of where she is now, and I'm very grateful I don't have her 24/7 anymore, but I truly don't even want to vacation anywhere until she's gone. I haven't driven more than 50 miles from home in years. I'm retired and worked from home for years, so there aren't old coworkers to get together with, and I was used to that. The only time I hear from my niece and nephew and their kids is when they need money, so no news is good news when it comes to them, and I've adjusted to the fact I won't be getting any invites for a hotdog on the grill from them. I'm just glad I'm doing okay myself physically and hope it continues. In the meantime when I'm bored, I work on a folder with future plans that I'll probably never follow through with (like actually going to some of the national parks, looking at maps and you tube videos, looking on realtor.com at homes in a small town in another state I'd like to maybe move to, etc. I'll never have a lot of "fun" money, but I did buy a senior lifetime national park pass and a fishing pole on a whim, and I've never fished, lol). For years now, I've treated holidays like they're any other day of the week and just spend more time with mom on those days, come home and fix myself a really good dinner, and I don't really mind it. I know now that there are many, many folks of all ages out there who feel "stuck," and I know it could be much worse for me.  I still look forward to the future.

I was also a care manager and it was stressful to work a full-time job and then visit my mother every night at the nursing home. This left very little time with friends. When I did go out, I was tired and very impatient with everyone around me. Now that my mother had passed, I have made new friends. Being a sole care manager for six years was not easy. I received no help from my brother. It was a very difficult and lonely time for me. I could not imagine how difficult it is for sole caregivers. Please look into different churches in your area that offers caregiving support groups.

Erinm60, It's one of the things that go along with caregiving. I think it is quite common and you're not alone in that department. In our case, mom, with Alzheimer's, was a 24/7 responsibility for 27 months. If we weren't right there with her she would try to get up and look for us and with her very bad hip and knee, falling was a high possibility. Sleep? What's that? Once we got her to bed at night we would try to get sleep too. No that didn't work well either. She would get up to the bathroom up to 5 times an hour--I think she forgot she already went--until a few hours passed, and we had to help with that too. It's like sleeping with an ear towards her bedroom.
There is little time for friends and very few understand anyway. We (I say "we" but mostly it was my loving wife) didn't have the luxury of going to a job during the day then caring duties after work.
So I guess it is normal to lose friends and for relatives to shy away. For one they just do not understand what it takes to be a caregiver. I sure never did until mom came to stay with us. Finally after the 27 months it was taking a toll on my wife's health and we found a nice care facility where she seemed to like it for 15 months until she passed peacefully at age 96. BTW, She never fell while she was with us. We didn't allow it.

I noticed this during the third year. There were no more invites that included our elderly cousin. The reverse was also true. When I invited anyone to join a lunch or dinner, the invitation was over scheduled or forgotten. That was a lonely 9 years. Try not to be as willing to comply with every demand they seem to need. It's only going to lead to more issues that have to be addressed the next day.

Most of my friends abandoned me when I was home looking after my mom. Now that she is in a retirement home, most of my family have abandoned me. It's like my mom was the glue and now that's she not here, I am completely ignored, as long as I am around to see her every day at the retirement home, they are happy. Nobody ever thinks of me, invites me for a family dinner or asks me if I want a weekend off. But it's my mom and I don't begrudge doing it. It just gets lonely sometimes.

My cousin who was like my little sister in many ways called tonight. She's 7 years younger. Her dad died last year o of f Alzheimer's. My mom is his sister. Her son killed himself 2 weeksbefore her dad died. She said she thought I was Abandoning her because i don't call. I was there 10 minutes after he hung himself. Ok. That was over a year ago. I said Kel , I'm going through h*ll here. My mom has Alzheimer's /dementia. I'm here 24 hours a day. I'm trapped. She said you should get down on your knees and thank God that's the worst thing you are going through. I said. By saying that. You have no clue what my life is and I'm sorry you lost your son. But this is ongoing. She lives 10 houses away. She has her Grief. I get that. I just explained that I feel I have no right calling her or texting with my situation. Well she had no clue my mom was on aricept. Because her sons death has been the focus of her Life. To make a very long post shorter. She kind of reached out to me. Let go of her grief. I asked her , do you want to hear about my life. How Alzheimer's has control and told her I felt I had no right to complain Well she s very happy to come to take my mom for a walk and was understanding. Not saying losing a child to suicide compares to 24/7 care of a parent. But I think my discussion helped her a little to move on from his death