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CLL Support Association
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Feeling isolated

I have always been a positive and optimistic person until the last few years when my health has gone downhill. I have 11 health problems now and find I can no longer do the things I used to or have the strength to get myself out and about much. I have three adult children, all married with families. One phones me once a week but the other two I hear from spasmodically. I do contact them but they don't have time to talk, or listen. My daughter who rings me only talks about her family. She doesn't ask how I am. If I tell her she listens but doesn't follow up on anything. I get the impression that they think as long as I can talk I must be ok. This us not so. My mobility us poor so I am limited to what I can do. My eyesight us deteriorating and I cannot see in the dark side can't drive in the evening. I have Macular Degeneration. I like to see but this us also becoming more difficult because if my eyes. I have Chronic Lymphoma, 6 years watch and wait, Osteopaenia, Polymyalgia, Hypothyroidism, Cold Urticaria, Severe Diverticulitis, Hypothyroidusm, Osteoarthritis everywhere. I try to stay posivite but living alone doesn't help when I don't see anyone unless I go out. My only comfort us my beautiful cat and he is great company.

Sorry to sound so miserable but this is how I feel a lot if the time.

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Totally understand. Know that you aren’t alone. You have us in the group. Are you able to get out at all? If so I would prioritize something that will help you meet people who will be supportive. Eg going to a support group. We are meant to have friends family and support. Also one day you could try (preferably face to face) to share how you are really feeling with your family. They may not have any idea and you might find they are more supportive than you expect.

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I do agree with what Adrian has said. Also, the local U3A is a potential source of interests and companionship if it is possible for you to get even slightly involved. Check out your local social services/health authority and nearest Maggie's Centre for relevant groups/services/activities and advice on what is available. There are some organisations that run befriender services including regular phone contacts if that might suit you better.

If that sounds of interest reply to this post to say so and I'll post a list of the ones I'm aware of.

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I do belong to the local U3a but it doesn't take up a lot of my life. I can't go to evening events because I can't drive in the dark.

I understand a lot of what many of you are saying but I just feel that my children put themselves first all the time. I don't expect them to keep running over to see me but once in a while would be nice. I have Grandchildren old enough to get on the bus and I have invited them. All they need to do is tell me when they will be in the nearby town and I would pick them up and take them back. I have always been there for them when they needed help of any kind. I suppose I am just disappointed in their attitude.

Thanks for all your thoughts anyway.

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I can understand that totally childerberry. We can suggest support groups etc. all day long but there’s bound to be a natural disappointment when your kids and grandkids don’t make much time for you and I’m sorry to hear that.

Best wishes and know the people in this group are always here to support and befriend.

Newdawn

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Hi...I too am interested in activities that would help me to become more socially involved. What is U3A? I live in Syracuse, NY.

Thanks,

Karen

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I am also unable to drive at night anymore.

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Hi. I don't know if there is any kind of US equivalent to U3A unfortunately. It's a UK organisation that has developed over the last few decades. Motto: Learn, Laugh and Live. It's for over-55s no longer in full-time employment or child-raising. It builds on the expertise of members in developing interest groups and with monthly whole branch meetings with speakers across a wide range of topics - and always there is tea and coffee. The social aspect is important and is mainly daytime but continuing to learn, at whatever level, is a major intention whether it's Canasta, Classics, Crafts, Cinema or Computing. It's for everyone not just those with a university background.

On a quick search the nearest equivalent I can find for U3A (The University of the Third Age) is:

AmericanLifeLongLearningInstitute(RoadScholar)(TheElderhostelInstituteNetwork)TheBernardOsherFoundation

roadscholar.org/about/lifel...

I hope this is of some help.

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Thank you. I am not in the U.S. I am in South Norfolk! I do belong to the U3a but I need to drive to everywhere. I try to conserve petrol as I am not well off but do go to the monthly meetings and sometimes the weekly coffee mornings. I also go to a sewing group as I like all kinds of crafts. Unfortunately my eyesight us getting worse so I don't know how much longer I will be able to drive or to see. I can't knit now because of arthritis in my fingers. I do try to help myself and stay positive it us just that my children don't seem to care. When you live alone it can become a lonely life. Never mind, there is always someone worse off and I appreciate the advice people have offered. Not all of it is appropriate but I get what is being said. Nearly all the friends I had locally have either died or moved away so there is just one left now and she depends on me to go anywhere. Her husband is unwell and can no longer drive or do anything really. I was widowed 24 years ago. My husband died of Oesophageal Cancer and I cared for him at home as that was what he wanted. I have no regrets about that and have always been there for other people. I will continue to do as much as I can and forget the rest! 😊.

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Sorry our posts appear to have crossed and caused some confusion. The one explaining about U3A is in response to Cook 4650 who is in the US and had also responded empathising with your situation.

I'm sorry your local U3A is not of more help - I guess they vary according their size and the people in them. May be worth talking to the current chair or approachable committee member to see if they could help? Probably they have no real idea of your position.

It's good to see many more suggestions for your general situation at the moment have been posted. I do hope that some of them meet your current needs and you find the best way forward for you.

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Hi I agree with the last two posts. You only mention talking to your family on the phone. Do they live far away? Do you ever see them face to face?

If not it may be time for you to call a family meeting and discuss with your them how you are feeling?

Do you feel able to assert yourself in this way with them? If not you may need outside help from a friend, another relative or services to instigate this with or for you.

Isolation is not good and if your mobility is poor it makes it more necessary for others to visit you.

I wish you luck and look forward to hearing your reply.

Ann

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You have been given some good advice here. If there is a support group I would start there. They may be able to give you advice on how to reach out to your family.

Here in the states we have volunteers that will give cancer patients rides, clean your home and other helpful services.

Keep your chin up and know we are all here for you.

Pam

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I have feeling isolated,too.Here I am not alone with CLL and other deaseses.

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Childberry,

The above suggestions about trying to get your family together and discussing your health and mobility issues. I doubt if they are being thoughtless, probably just unaware of how you feel ?

I am not great with joining group things ( apart from here ) but maybe getting you some help from various organisations could be something your family could help you with and they can do from home/work. I am lucky, as I also live alone, to have two stepdaughters who will come to the more serious hospital appointments and do small jobs around the house. I know that Age Concern have a free handyman service. You don’t say where you live ?

Give your 🐈 a stroke from me.

Colette xxx

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Childerberry,

Very sorry to read about your post and your feeling of isolation. I don’t have answers to your feelings but strongly suggest you speak with someone who can. I have a close family member who had similar struggles and found discussing it with a trained therapist who specializes with these situations helped tremendously to understand and feel better how to both address their feelings with friends, family, children etc..... I wish you the best and you are not alone, if you want to message me privately please do I will try to provide you with more details.

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So sorry that you are feeling so isolated ...It’s very frustrating when children don’t understand how you are feeling .... especially when you were always so positive and giving

Try to be your own Advocate ....

take the advice offered by the others and use us for a listening and understanding ear .... We care , we understand , we are here with you and for you and you can help us as well .... Being part of this group means you are not isolated and hopefully can direct your other talents outside to establish face to face friendships when you feel strong enough ....

Many of our children are afraid to listen to what we can’t do any more because they can’t fix it .We have to lift ourselves up and do what we can to feel better and less alone .

Try and enjoy your kids and grands without expecting anything and then when they do give , you will be so much happier...

Be well!!

..

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As a child of a healthy mom the thought of my mom being sick and having to care for her {she is my caretaker I am very sick w CLL} truly makes me want to vomit. I am telling you this as a child perspective bc there is something about our parents getting sick that is so scary and we don’t want to acknowledge that they are not going to be around forever so we take you for granted. I think your kids are scared of losing you and don’t want to hear all your woes and sickness bc of fear.

This is my personal opinion and actual experience bc when my mom complains about a thing I become closed off and worried and ignore her which is totally selfish and evil of me but I can’t deal w the thought of bad things happening to her.

Sorry but I have to tell you my opinion lol

I wish you all the best and trust me I know that lonely feeling from being trapped inside w this disease and neutropenia and anemia.

Feel good! Xoxo

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I don't expect them to do any actual caring. I just would like their company sometimes and to know they are there for me if I need them. If I could have my Mum back I would do anything to care for her. I miss her every day.

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You are not selfish and definitely not evil .... I’m sure you tell your Mom how important she is to you and how much you appreciate her being there for you...

Hope that the CLL symptoms improve and then you and your Mom can enjoy together

Be well!!

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I adore my mother and let her know almost daily how amazing she is and lucky 🍀 I am

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😲

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Hi childerberry,

I’ve reflected hard on your situation since yesterday but have felt unable to respond as openly as I’d like due to it being an open post and I’d need to include personal information.

My mum had macular degeneration which started in her very early 70’s. Sadly it was the wet type and before the days of lucentis treatment so her deterioration was more rapid. I mention this because it can lead to a sense of loss and isolation which was brutal to watch and I felt helpless. I appreciate your sight situation isn’t as advanced because you’re still driving but I’d still recommend the RNIB (Royal National Institute for the Blind) to you because they offer everything from assessment and practical services to day centres for people with people with all degree of sight impairment. My mum found company there and attended social events. It’s worth enquiring if there’s anything in your area.

I sense you’ve always been so independent and self sufficient that your family are unaware of your needs now. Can you become more involved with them not just in a dependent capacity but to help them? Trouble is families are often so busy that an assumption is made that mum or dad are ok simply because they are mum and dad are are strong and capable.

I can imagine your CLL is the least of your problems at the moment childerberry but even though we may not expect much from families, everyone needs a concerned and reassuring word at times of illness. You know your kids best and I hope you can find a way to become more included and for your increasing health needs to be acknowledged.

Best wishes,

Newdawn

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I’m sorry you are feeling so alone. Your kids may be overwhelmed by all you have going on that it would disrupt their lives if the get involved. If they live close I would ask them on occasion to run an errand for you without telling them about your illness. Maybe getting them involved this way would help them realize what your situation is.

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They are well aware of what my situation us. They are not children they are 51, 59 and 46 years old!

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Hello, childerberry: Your post could have been written by me, almost verbatim. A few of my health issues are different, and I have 2 grown children rather than 3, but otherwise you and I could be clones. Even my daughter sounds like yours!! I am married and my husband (who is awesome) and I both retired, but even though he's 70 his health is excellent and he doesn't even have any arthritis. He has many hobbies and many friends, and goes out somewhere almost every day. He is very good to me and takes me out a couple of times a week, but as you know, going out can be difficult, and some days impossible. Oh, and one other difference that could be comical I guess if you look at it a certain way: our cat adores him and barely tolerates me, even to the point of biting me! I totally understand where you are coming from, and don't have any substantial advice I guess, other than the fact that we have to keep putting one foot in front of the other. However I could throw out a few suggestions that I TRY to take myself, and that you might have better luck with. Have a friend come over to your house for lunch rather than meeting somewhere, and have them pick up the lunch on the way, which you can still pay for, or go dutch. I have actually done this and it worked out fine. Also, if one of your kids is local to you, take the initiative to call THEM, and say you baked a cake and can't eat it all so you want to bring it over for them. If you have grandchildren, make sure to get their school schedules so you can attend concerts, recitals, etc. that they appear in. If they don't communicate their schedules to you, the schools always have websites announcing their events. Or ask to go school shopping with them and treat them to ice cream afterwards. My own grandkids are ALWAYS up for that. I have also taken classes given at the local senior center and met people that way. They don't have to become life long friends, but you're getting out and meeting people, and exercising your mind. I admit I spend a lot of time home alone, so I do genealogy on my computer, and talk to folks on Facebook. And those of us here on this site are always here for you! Good luck, and keep us posted.

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I know how you feel I fill the same way I have two adult children two and they try to come and see me once a week but they both work and when they come it’s late so I guess I only get 3 are 4 hours with them but that better then no time . I also move in with my aunt to take care of her in some ways she is better off then me I wait on her and my husband hand an foot and in sept it was a year ago I found out I had CLL my doctor put me on imbruvica . When they feel bed they rest when I don’t feel like holding my head up I have to carry on. I guess I’m just feeling sorry for myself but sometimes I would just like for someone to wait on me. I hope you can make sense out of this I’m not good at this. But I hope things get better for you.

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I think we are brought up to believe that the woman does it all and we think if we dont or cant that the world will come to an end. I say this with hindsight because of the agony I had with my back. Persevering made it worse until I couldnt do anything. They will always expect you to do it unless you tell them that you are sorry but you need to have help. Be kind to yourself. Anne

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Some excellent suggestions given - I agree first it sounds as if you need a “go between “, someone who can intervene for you with the adult kids. A friend, nurse, counselor? Stress how much you need just to know they care. Senior classes might help, I’m not a senior but I take my mom to one and most of the exercise is seated. People are generally nice. Even people with walkers and wheelchairs are there usually - they may be very limited but are taking that hard step of just showing up! Swimming exercise classes also good for those with impaired mobility, lots of ways to help get you in the water. Please

don’t give up, regardless. Sometimes we have to put our pride aside and just call for help with agencies or nonprofits. Can a neighborhood church help? They usually want to help people who truly need it.

No one likes to be dependent on others but sometimes our circumstances call for it if we are to survive emotionally and physically. That’s hard, but we all care about you! Please keep us posted as to what steps you take.

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Childerberry, I'm so sorry you are feeling lonely! I'm divorced with no children of my own and my parents have severe dementia, so I could be in a lonely situation one day. I've decided if I get too lonely to either join an intentional community or an assisted living facility so I will have some company. If you have those in the UK maybe you could give that a try! As much as we wish our families were perfect, supportive, loving and caring and always there when we need them, humans are not perfect and must be accepted as they are. For instance, the most supportive person for me in my family is my brother's ex wife! She has jumped in to take care of my brother as well as me. Who knew? LOL. God Bless you, I wish you peace. Lee Ann

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Sorry if this was suggested and I missed it and I know you are in the UK so not aware of their system or your situation but are there group living situations you might look into? I've had friends who benefitted greatly from just being in close proximity to others who can relate to what you are experiencing. Having activities and transportation nearby can also be empowering. Being ill is terribly isolating and you have more than your fair share.

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CLLsociety.org has a lot of good information that might help,

I hope you feel better,

Be well,

Hoffy

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