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

I thought I was the only one. I agree that family just get too busy coping with whatever. I was diagnosed with FTD in 2016.

REPLY
@221946

I thought I was the only one. I agree that family just get too busy coping with whatever. I was diagnosed with FTD in 2016.

Jump to this post

@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.

REPLY

I don't do anything specifically for my brain. I exercise regularly because I want to. Balance issues are more of a concern than anything else.

REPLY

@221946 Thank you! I never connected that frontal brain damage might affect balance. That clears up a lot of things for me!

REPLY

Absolutely ! See : No Love Involved Caregiver, I just posted here.

REPLY
@mark_fugate

I wish that I could offer some comfort. I am very fortunate in that my wife and I are "Empty Nesters" and we both understand that the family gets sick, not just the individual.

I have out of control diabetes and my wife and I both have altered our lifestyles and eating habits which makes things much easier for me. Further, my wife is actively involved with my monitoring and asks every blood test time what my blood sugar is. She even calls me at work to ask.

It wasn't easy for us to jump onto the straight-and-narrow. It took a massive bilateral PE and a week of me in ICU to scare us both straight.

I like the classes idea. I suggested that to a high school teacher last eve that has concerns for one of her students. I suggested a "Home Ec" like setting using the magazine "Diabetes Forecast" as a teaching and study guide. Maybe the same sorts of groups could be assembled as social groups where diabetics or anyone else with any other health issues quorum together to fix meals, learn and socialize.

Jump to this post

Wow! Mark! Hang on to that wife of yours; she sounds like a gem. I am not so lucky, my wife is a workaholic and rarely checks up on me at all. Thanks for the suggestions.

REPLY
@alpaca

Hello @chocolate5lover I think a lot about this. I'm a cancer "survivor" on a Facebook group with others like me and people will often complain that their family doesn't "get it". Every case is different but I think in my case and others the family expects you to move on after the initial treatment but you can't move on and suddenly realise how lonely it is to have a chronic or life-threatening illness. The only people who really understand are those who have been through the same thing. I hope this makes sense. I have felt abandoned by my family before – not at this point no – but I know how you must feel.

Jump to this post

Wow! People like you are my hero's!!!!!! My wife is a medical professional, but she is always at work, and doesn't have the time to help me. You have lifted me up today–thank you!!!!!

REPLY
@ihatediabetes

Can you sign up for living with diabetes class? I signed up for the class. It's once per week. I think its support and teaching all in one.

Jump to this post

Is this online, or do I have to live in a certain location to attend?

REPLY
@221946

I thought I was the only one. I agree that family just get too busy coping with whatever. I was diagnosed with FTD in 2016.

Jump to this post

No, you are not alone. From what I read on this site, it happens all the time. Hang in there, and this site will help you. It has helped me!

REPLY
@chocolate5lover

Is this online, or do I have to live in a certain location to attend?

Jump to this post

Living well with diabetes is offered in many locations. I think it came from living well with chronic conditions which was developed in Stanford University. So many non profit organizations offer it. You can find it in the Twin Cities under yourjuniper.org.

REPLY
@chocolate5lover

Is this online, or do I have to live in a certain location to attend?

Jump to this post

I took screen shot of this organization that covers Rochester. I took living with chronic conditions in Red Wing. I signed up for living well with diabetes in Twin Cities through yourjuniper.org. Hope that helps. These programs are all over country.

Screenshot_20180911-224505

REPLY

I have a chronic disability that doesn't show on the outside so people think there is nothing wrong with me, my family included. My husband is perhaps the worst because he can't handle the fact that I can't do all the things I used to do. I have surgery on Monday morning and that afternoon he was having a hissy fit because I wasn't able to cook something to eat. I try to get him to understand but he is so used to me taking care of everything he doesn't know what to do if I can't. After 43 years together I would hope he would be more willing to help me for a change.

REPLY

@cindyt63 Ouch! that is rough. I have talked to my husband, explained that my stamina simply won't let me do some things anymore. It is sad for me to say that, even to myself. We have to advocate and explain over and over again, and learn to put our foot down. I'm so sorry he treated you like that. I hope your recovery goes well.
Ginger

REPLY
@cindyt63

I have a chronic disability that doesn't show on the outside so people think there is nothing wrong with me, my family included. My husband is perhaps the worst because he can't handle the fact that I can't do all the things I used to do. I have surgery on Monday morning and that afternoon he was having a hissy fit because I wasn't able to cook something to eat. I try to get him to understand but he is so used to me taking care of everything he doesn't know what to do if I can't. After 43 years together I would hope he would be more willing to help me for a change.

Jump to this post

Hi @cindyt63 Nice to e-meet you here. I am sorry to read of your challenges! Early in my wife's battle with her brain cancer she looked quite normal on the outside, but was a mess, both physically and cognitively, on the inside. I can't tell you the number of times people made terribly hurtful remarks about her, within earshot, simply because she looked 'normal'. This also was a contributing factor to why the vast majority of her longtime friends abandon her. She looked like her old self, but wasn't acting like it. Unseen disability can be very challenging for the person with it for sure!

I bring this up since I know change can be extremely difficult for some folks to accept. When it happens with someone we love it can be doubly hard to accept. I know when my dad was failing from CHF my mom would demand that he do all the things he did before and when he couldn't she'd get upset with him. I chalked it up to fear on the part of my mom.

Sorry I have no answers, but just wanted you to know you are not alone….which sometimes can help at least a tad bit.

Strength, courage, and peace!

REPLY
@chocolate5lover

Thank you! All I wanted was one person who understood what it is like. My 2 sisters were my support group, but both of them are going through their own problems right now and are not available. That is why I sought out this support group. In November I will have had type 2 diabetes for 6 years now. Thank you for your response, I needed to hear from someone who understands this disease.

Jump to this post

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!

REPLY
Please login or register to post a reply.