Family doesn't understand my struggles.

[55-61sept-33]

Good morning to everyone.

How many of you get help from your family ? I have 3 grown adult daughters who treat me like I have the plague. I ask for help and get told their to busy working or running errands or taking care of their own family.

I can't even get them to take me anywhere or do anything with me...they don't ask me to go anywhere with them. I'm so hurt and so confused some days I sit here and cry I feel so alone.

I have voiced my feelings thinking it would help but it hasn't. I just don't know which way to turn.

My husband works 60+ hours a week comes home does dishes cooks meals does laundry does the grocery shopping. I'm so blessed to have him and so grateful to have him in my life for 34 years !!

I feel so guilty when he comes home from work and does all these things after working all day. He is 62 years old and has a few health issues himself,. I'm just at wits end with my family.

Any suggestions on how I can get my daughters more involved ??

[joyful4u]

Hi, it's gotta really hurt to feel abandoned by family. There are times when my children can't be available for me, but I remind myself of how busy my life was way back then. That causes me to be thankful for all that I have. You're right in that you are blessed to have such a kind hearted husband. Mine passed away last year but I thank God my adult son lives with me. Life is very difficult but my faith gets me through. I believe that God loves all of us and has a plan for each of us. I'll be praying for you, that you find peace in each moment & that God meets all your needs...He has promised to. May He bless you...one day at a time. Please continue to post. You have a great support system here. .I know this because I've received some support & encouragement myself. Terri

[55-61sept-33 in reply to joyful4u]

joyful4u ..... thank you so much for your kind words and encouragement. I don't mean to make it sound like a poor me situation that's not what it is at all. Yes I do understand that they have their own lives however once in a while sure would be nice.

My step daughter and her 9 year old son are living with us she is unemployed and sleeps all day won't even offer to help. I'm just overwhelmed and have a very rough time getting household things done. Let alone be able to afford someone to come in and clean.

What will be will be.

[Proland in reply to 55-61sept-33]

First post for me, understand the loneliness and feeling left out!! Everyday is a day of being thankful for just wakeing. I hope I can find some help here with my issues. Just want to vent sometimes

[joyful4u in reply to Proland]

Welcome to this site. It's a blessing to be in a place where we can share our stories & experiences & yes, even vent, yet still be understood & encouraged. Don't hesitate to post. Someone here can give good advice or support & most can identify with you. Terri

[shadow4me]

The trouble with this horrid disease because you often look okay people just dont realise how you are struggling to get one good breath .I am very lucky like you I have a lovely husband and a grown up daughter still at home to help but I hate it i feel I have lost all my independence xx

[55-61sept-33 in reply to shadow4me]

Yes miss being independent !! Can't work but very thankful that I'm on SSDI what little bit I get helps out but I would rather be working for that income.

My husband is my rock I would not be here if it wasn't for him.

[nepats32954]

Good !uck with your daughters,guess when they get older they will wise up.You have your husband.I feel bad cause i cant do things and my wife works part time and drive me around,i have grandmals and copd.I try helping but cant do alot now.

[55-61sept-33 in reply to nepats32954]

I guess one day they will grow up and realize life is so short !! My oldest will soon be 35 and out of all the kids she is the most mature one. That's one reason why I'm so hurt never thought I'd go through this with her.

[Ldycatcoach in reply to 55-61sept-33]

My grown daughters are 35 and 32. And live within a mile of us. They are married, have two young sons each (ages 7 & 2 and 6 & 3). They are all employed within the school system as teachers or administrators, so their lives are filled with day to day responsibilities. I think they lessened contact because of an unconscious effort of denial. Mom is not suppose to "be sick". Possibly trying to cope with separation anxiety (fear of Mom dying)?? I found that if I fixed one meal a week (I have a revolving list of easy fixes, casserole meals from the freezer, or take out that I can prepare or pick up - they do clean up.). They never pass up a meal with their busy schedules. This gives us quality time. Since my transplant, they have been wonderful - we had to stay near the transplant center for three months, so by the time we were able to come home, they were ready to help all they could. Traveling back and forth in order to relieve my husband occasionally was more difficult than helping out "at home". Now they are constantly stopping by, calling when shopping to see if they can pick things up for me, and taking turns when I need an outing. I'm not sure if you (or your husband) are able to handle having a large group for a meal, but if they get along well, I think they prefer visiting together - keeps them from facing my health issues alone. Maybe this makes sense. We also have a strong faith in our awesome God and lean on Him as we fulfill His purpose in each of us. (My husband is also one in a million and continues to care for me - I am so thankful that day by day I'm regaining my ability to "participate" in real life so that he can enjoy some of his favorite hobbies). May God bless and strengthen you daily.

[Rgodwin in reply to Ldycatcoach]

How long ago was your transplant? Are you doing much better? I am working toward a trans plant.

[Ldycatcoach in reply to Rgodwin]

I had a double lung transplant on January 1st, so I'm a little over four months out. I'm doing great - no rejection thus far, but definitely a new journey to be experienced. It took awhile to adjust to the medication schedule (42 pills a day - some due to other health issues), but I can handle the schedule now without giving it a thought. My clinic appointments, blood work draws, bronchoscopies and other post transplant tests are now becoming fewer with more time between. It's great to be able to breathe and participate in life once again with my family. I thank our awesome God daily for allowing me this extra time and also thank my donor and my donor's family for giving me the gift of life. I do not believe I would have lived to experience spring this year without it, I'll be glad to answer any questions that you might have about pre-evaluation, my actual transplant experience, and my post care. You may email me at [e-mail] if you prefer.

[lynnely51 in reply to Ldycatcoach]

May I ask your age and whether you smoked in your life, and also where you are from? My mom has end stage, she is 82 and she quit smoking 30 years ago, but still got copd. A dr said the other day she should try o get a lung transplant, so I am curious. Does insurance cover any of it?

[Ldycatcoach in reply to lynnely51]

I'm 59 and never smoked nor was I ever around second hand smoke. My diagnosis was bronchiolitis obliterans and I am an Alpha 1 Antitrypsin MZ (carrier). Most likely mine was caused by cleaning chemicals, gym floor cleaners and varnish, and diesel fumes. I taught, coached, and drove the athletic bus for thirty-five years. (Otherwise - if not these, then we have to classify it as idiopathic). I live in South GA near Valdosta and had my transplant done at UF Health / Shands in Gainesville, FL. They have an awesome transplant team of surgeons, critical care / transplant doctors, and nurses. Yes, my insurance did cover my pre-evaluation, procedure, and post care (after deductible was met). The oldest individual in the program at the time of my transplant was 72 and she is doing great. They evaluate based on biological age and not chronilogical so I'm sure various medical conditions are taken into account before being placed on the list. I hope this helps.

[joyful4u in reply to Ldycatcoach]

I enjoyed reading your post. You've mentioned a few things that I agree with. Fear & denial can paralyze our lived ones in that they are not in a place where they can accept the reality before them or feel inadequate to respond in a helpful way. I saw this happen when my dad was in a nursing home the last 3 months of his life. Before that I was his caregiver for 5 years. When I saw that family felt uncomfortable, I invited them to visit my dad at the same time as I did. It was so much easier on them & the visits increased. Lastly, I also trust God in all circumstances. He loves us all & has a plan for us...for hope & a future. God bless you on your journey. Terri

[stone-UK]

Hi

This can be applied to any illnesses.

butyoudontlooksick.com/arti...

[Joaniemdc]

I'm going through the same thing, but do admit , my son and daughter have been struggling with their own issues. I pray, meditate, and put my heart ache into God's hands.

[Jimbuck]

Hi my lovely, there are few words of comfort I can offer but wanted to share my situation with you as it is quite similar, I'm lucky that I recently had a reconciliation with my youngest of three brothers, the rest of the family don't want to know and indeed have their own issues to deal with. My parents were unsupportive when around but have both passed away. I moved back to the town I was born in after 20 years. My COPD is borderline stage 2/3 and am adamant I will not give in to the illness. I have complications of other illnesses which impact greatly on my day to day living and have no partner. I guess my advice to you would be to remember all of the major life oriented hurdles you have already overcome and focus on the things you can do to improve your quality of life. Seek support from agencies in and around where you live and if you can join in with events such as coffee mornings that are usually offered by your local parish. I wish you all the best and ask you please not to isolate yourself, remember that you are not alone. Although it may feel like it at times. Keep in touch and make use of this service. Keep song in heart and mind. Love and hugs to you. James x

[55-61sept-33 in reply to Jimbuck]

Thank you so much for your advice and very kind words. I really appreciate it. God Bless.