No support at home!

Posted by chocolate5lover @chocolate5lover, Sep 8, 2018

Does anyone else have trouble with–no help at home from family members?

Liked by ssbionicknee

@2011panc

@221946 Thank you for sharing. I do not have the same diagnoses as you, but I do have trouble with language — particularly finding the right word during a conversation. I have noticed this since 2009 after an episode of a severe migraine caused by a swollen brain. My physicians keep telling me that this is just aging, but I know it is not since it is clearly related to the migraine episode. It felt like a stroke to me, but testing in the ER did not support that diagnoses. Are there things you do to maintain your brain health and reduce progression? I am interested in possibilities to slow progression of functional losses. Thank you for any information you can provide. Blessings to you.

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Make sure you get ALL your hormones checked, sex hormones included! If your a women, even have your testosterone checked and if your a man get your estrogen checked! They can cause all kinds of problems when they are at the wrong levels. I’m always surprised that it’s not one of the first things doctors check when there are cognitive problems, thyroid especially for that. No one should ever tell you that age is causing you to feel bad or cause migraines, and just expect you to live with it. Though, for your part, eating healthy is key to feeling well!

Liked by 2011panc

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Yes!!!!! I just got home from a trip across the country for follow up with University of Michigan’s amazing PULSE clinic, for post-sepsis. I coupled it with a visit to family who also live nearby, many of whom I haven’t seen since being sick. It was a huge trip for me to do alone; none of my immediate (very supportive) family members could travel with me at the last minute. I was blown away by the coldness of several very close family members. I received a similar comment as above from my mother, stating I was “hard to be around” going through this recovery. I cut my trip short and now am recovering from that “vacation”!
I need to pray more
God does offer peace
Psalm 18 has been my go-to.
God bless you all. We all need self-compassion and kindness

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@2011panc

@mark_fugate Thank you for sharing here. I also was a Type I diabetic unable to control my blood sugars until I received a pancreas transplant. May I ask what type diabetes you have, how long you have had the diagnosis and how you have been advised to manage it? I agree that a group or class for diabetics could have many benefits in a community, but I also see some possible dangers. With no medical input a sharing group can lead you astray with "alternate" recommendations; and if led by a medical expert sharing may be limited and the group may become more like a college lecture. A balance of the two would have been best for me and drawn me in. Hopefully you can follow through and help your community begin something like this not only for diabetics but also for their friends and family.
I feel I must admonish you and your wife a bit. Your diabetes is your responsibility. It is good your wife is interested, keeps up on your condition and needs, and assists with daily management;, but it sounds like she may have taken on the role of mother/warden in your life. You need to protect your marriage by taking the lead in taking responsibility for your disease. Be forever grateful for her love and support, and be glad that in a crisis she knows how to help you; but day to day she should not have to worry about your behavior while you are away from her. I am sorry to scold you like this, but please discuss this with your wife and hopefully build a better life together. Blessings.

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@mark_fugate – I agree with @2011panc – as far as admonishing you. You are fortunate to have a wife that supports you, but do not forget that she also needs care and support. It is easy to allow someone to take care of you, but the caregiver also needs care…

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I don't have diabetes but I do understand what it feels like not to be helped or supported. I've had major health issues myself and – because the scars are not visible – people think I'm able to "do everything" for "everybody. I have to put myself first. My health first. If I cannot take care of myself, I won't be able to take care of anyone. I have to constantly remind my husband – that I can't do things. He's getting better at helping out. A little more understanding of my limitations. Do you have a friend or support group where you can talk about your diabetes and how to handle your diet and glucose changes? I have a friend that is on medicare and just the cost of the insulin for her blows my mind!! It's very expensive!! Maybe here you can find someone that you can share with. I will keep you in my prayers. Having God as my support system really helps me. Blessings

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@kateia

I don't have diabetes but I do understand what it feels like not to be helped or supported. I've had major health issues myself and – because the scars are not visible – people think I'm able to "do everything" for "everybody. I have to put myself first. My health first. If I cannot take care of myself, I won't be able to take care of anyone. I have to constantly remind my husband – that I can't do things. He's getting better at helping out. A little more understanding of my limitations. Do you have a friend or support group where you can talk about your diabetes and how to handle your diet and glucose changes? I have a friend that is on medicare and just the cost of the insulin for her blows my mind!! It's very expensive!! Maybe here you can find someone that you can share with. I will keep you in my prayers. Having God as my support system really helps me. Blessings

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No, I recently lost my support group–my 2 sisters. One is going through a divorce and the other's husband passed away. So, for now I will use this site as my support system. I am Christian also, and pray regularly and read my bible. So I let God lead me. Thanks for your reply.

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@nire

Healthy eating is key to diabetes, as it is with all health. I do not have diabetes but read a lot about it while studying healthy eating and gave it to my son when his sugar was at the limit of going over the top numbers, two times in a row. Next appt, 3 months later, it was down in healthy range. I have recommended it to relatives and friends with type 2 diabetes and they have had great results in keeping their numbers down. Lots on the internet about it too. Cinnamon is wonderful for type 2 and Ceylon cinnamon is the purest and best. Ceylon is mostly found at health food stores. It probably won’t cure it but it can keep it from getting worse. I also have a doctor friend that credits me for getting him to start cinnamon when his sugar started getting high and he kept it under control with cinnamon. Ask your doctor before starting anything new like that but be prepared with info from legitimate sites to back it up!

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Unfortunately, I am allergic to cinnamon. My brother recommended this to me a while back, but I have food allergies and this one I can't try. But, I am happy that it helped your son.

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It is hard to ask for help. I have always been seen as independent and not needing assistance. I had lower bowel surgery a while back and with 36 stitches in my belly, couldn't move very well. I had two daughters in town and over a 30 day period, they didn't see me once. Saw me in the hospital though. I lived alone in an apartment. If it wasn't for meals on wheels, I wouldn't have eaten much. Could barely walk. Did I call them and ask for help? No. Dumb and stubborn, I guess. I am due surgery to take out the bladder, prostate, and lower bowel in a couple of months. At least now I have a girlfriend to be with me even though she has her health issues. I am 71 and she is 75. I have since moved and now am in town with a brother and two sisters. They say call if I need anything but really? I am told with the new surgery, I wouldn't be able to lift more than 10# and not be able to put on my socks myself. 10# is just shy of a gallon of milk. Can't carry a suitcase or bag of groceries. Dumb them down to less than 10# I guess. No lawn mowing or snow shoveling. Hire neighbor to help? Maybe. Will see and just go a day at a time when the surgery happens. This is an issue.

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@hodagwi

It is hard to ask for help. I have always been seen as independent and not needing assistance. I had lower bowel surgery a while back and with 36 stitches in my belly, couldn't move very well. I had two daughters in town and over a 30 day period, they didn't see me once. Saw me in the hospital though. I lived alone in an apartment. If it wasn't for meals on wheels, I wouldn't have eaten much. Could barely walk. Did I call them and ask for help? No. Dumb and stubborn, I guess. I am due surgery to take out the bladder, prostate, and lower bowel in a couple of months. At least now I have a girlfriend to be with me even though she has her health issues. I am 71 and she is 75. I have since moved and now am in town with a brother and two sisters. They say call if I need anything but really? I am told with the new surgery, I wouldn't be able to lift more than 10# and not be able to put on my socks myself. 10# is just shy of a gallon of milk. Can't carry a suitcase or bag of groceries. Dumb them down to less than 10# I guess. No lawn mowing or snow shoveling. Hire neighbor to help? Maybe. Will see and just go a day at a time when the surgery happens. This is an issue.

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Hello @hodagwi Sorry to hear of your past and coming health challenges! I agree with you. It is often hard for us to ask for help — and I may be wrong here, but often especially hard for us men. That said, I had to overcome that when I had spinal surgery and then while I was my wife's caregiver during her war with brain cancer. There come those times when we simply cannot manage to do something physically or emotionally, and help must be summoned!

You are lucky that you have siblings who offer to help if you call — so my free advice is to take them up on their offer and explain ahead of time what your limitations will be and how they might be able to help with groceries, perhaps a car ride to/from someplace, etc. One of my biggest issues at the time of my surgery was fall leaves and it was very hard to find someone late in the game, so it may be helpful to line up those paid assistants early on!

Just my two cents plain and based on one old foggy's experiences.

Strength, courage, and peace!

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Yes!! I live with and help my elderly parents. This past May I had a total knee replacement on my right knee. My parents are not able to give me as much help as I needed and I understand that. My sister, however, has not been here to visit since before my surgery. I was thankful that my church was able to give me the help I needed. My son gave me a little help, Very little. While I was recovering from the knee replacement, I fell and took a hard hit to my shoulder while recovering and now I have a full tear in my rotator cuff, a tear and dislocation in my bicep, and another tendon tear. So 5 months after my TKR. I will be having shoulder surgery. Of course it is my dominant hand. Again, my sister says she can not take off to come for the surgery. However, she managed to visit other relatives. My son is not able to help either. So, I am preparing meals to have after the surgery and doing as much as I can before the surgery. I will need rides. I understand how you feel. It is frustrating. I will figure out how to get to my doctor's appointments somehow. And I get to deal with this all over again after my shoulder has healed, because I need my left knee replaced. I have been feeling overwhelmed, but slowly I am starting to come up with a game plan.

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I guess what is surprising is that I let my kids and brother and sisters know what is going on with me usually by email. After I do that, I don't hear anything. Nothing. No response to the email, no phone call to check on me or to offer support. I know I am strong and haven't asked for help often but some empathy would be nice or concern. I know that they love and care about me but it sure doesn't show. For one doctor's appointment, I took a cab even with both daughter's in town. To be fair, I didn't ask them to drive me. Just stubborn I guess. If something major happens, I don't know if they will be there.

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@hodagwi

I guess what is surprising is that I let my kids and brother and sisters know what is going on with me usually by email. After I do that, I don't hear anything. Nothing. No response to the email, no phone call to check on me or to offer support. I know I am strong and haven't asked for help often but some empathy would be nice or concern. I know that they love and care about me but it sure doesn't show. For one doctor's appointment, I took a cab even with both daughter's in town. To be fair, I didn't ask them to drive me. Just stubborn I guess. If something major happens, I don't know if they will be there.

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@hodagwi I used to be like you, never asking and thinking that hey should know what to do. Then I learned that I need to say what I want and need out loud. I thought that was a great lesson to learn. The harder second part of that lesson was that just because I asked did not mean I would get what I want or need. Unfortunately for you, you do not have a clear conscious about being abandoned by our family because you have not done your part of communicating your needs and wants. Maybe it is easier not to ask, but it is not their fault that they do not know your expectations. Just remember, just because they know does not mean they will change their behavior — but it might.

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@2011panc

@hodagwi I used to be like you, never asking and thinking that hey should know what to do. Then I learned that I need to say what I want and need out loud. I thought that was a great lesson to learn. The harder second part of that lesson was that just because I asked did not mean I would get what I want or need. Unfortunately for you, you do not have a clear conscious about being abandoned by our family because you have not done your part of communicating your needs and wants. Maybe it is easier not to ask, but it is not their fault that they do not know your expectations. Just remember, just because they know does not mean they will change their behavior — but it might.

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@2011panc

You make a good point. We do need to speak up when we have needs.

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@gingerw

@oregongirl I am not a Mom. My lack of support comes from my siblings. My mother "didn't get" my illnesses, either, but at this point I forgive her that, as she had her own mental demons to battle, along with dementia and Alzheimer's. She told me I was making things up so people would feel sorry for me. Not my agenda at all: I wanted certain people to be aware of my situation in case something happened.

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@gingerw, Oh my goodness. My son told my other two children that I was making things up to get sympathy. Can you believe it? Don't I wish I could afford to travel the world and be gone all the time until I die. I do not wish to interfere in their lives. There comes a time in a persons life that I believe we have lived out our usefulness to the family. Oh they still love us, but please mom, we are SO busy with work. Now, my daily prayer as I have said before is Please God, don't let me linger.

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@oregongirl

@gingerw, Oh my goodness. My son told my other two children that I was making things up to get sympathy. Can you believe it? Don't I wish I could afford to travel the world and be gone all the time until I die. I do not wish to interfere in their lives. There comes a time in a persons life that I believe we have lived out our usefulness to the family. Oh they still love us, but please mom, we are SO busy with work. Now, my daily prayer as I have said before is Please God, don't let me linger.

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I am so sorry to read this @oregongirl It reminds me of a time when a family member asked me 'how is your caregiving going?' I told him what the prior day had been like and heard from the rest of the family that I was 'whining to get attention'.

I wonder now how prevalent this response is when we simply answer a question on our health or our caregiving duties!

Strength, courage, and peace

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@oregongirl

@gingerw, Oh my goodness. My son told my other two children that I was making things up to get sympathy. Can you believe it? Don't I wish I could afford to travel the world and be gone all the time until I die. I do not wish to interfere in their lives. There comes a time in a persons life that I believe we have lived out our usefulness to the family. Oh they still love us, but please mom, we are SO busy with work. Now, my daily prayer as I have said before is Please God, don't let me linger.

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We have taken many cruises. For about $3000 a month could live aboard a cruise ship. Meals taken care of. Cabin cleaned daily. Chance to see the world. Entertainment. Limited health care though and cheaper than a nursing home. haha. I agree. We all are going to die but the process of dying is scary. Don't let me linger either. Have 4 kids and 4 grandkids and lucky to see them in an evening with grandkids working, volleyball, being at their dads, not living close, evening meetings, etc, etc, etc. Time to make a life for us, me and you, without planning it around the kids.

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