Lost my husband, fibro/cfs bad, he was caregiver

Support
1

Hi. It has been a while since I shared. On Sun. Feb 28 I lost my husband of 22 years. I am 66 and with his love and support lived with fibro, chronic fatigue syn and degenerative disk (severe). He had his pains also. We helped each other. I could bend, he couldn't. He had strength and the endurance I didn't. He did most of the cooking, all laundry, scooping cats litter, take out trash.

I have already checked about light housekeeping/cooking with insurance. Maybe.

I overdid badly the last 2 weeks of his life. He had a cold, went to hospitals for tests, then suddenly he was in ICU with pneumonia (I have questions about what led to his death- will talk with attorney). I had to go to the hospital, take care of things with cats, eat, drink fluids, battle pain cause no one was here to push my wheelchair cause from car to ICU was long walk. Spent hours with him.

Now my body is paying the price. Usual muscle cramps, exhaustion- severe, dizzy, can barely feed cats let alone myself. NO FRIENDS or family here except one who came over (reluctantly to make me some chicken salad yesterday.) My next door neighbor- my husband's best friend here (we move here 2 yr ago- ppl keep to themselves here) told me today to get up and take the rent check in myself- that everybody here has body pains- get over it.

He as well as most don't understand the nature of our condition. My rheumatologist is my sole supporter. I see him in a few days.

WHY AM I WRITING? I need support. One friend of the few true friends I have (problems show u who are true friends) one friend coming from San Francisco to Hemet which is about 1 hr outside of Los Angeles in the desert towards Palm Springs. She is helping me for 3 days. There isn't anyone else. My sister was here when Jay was in ICU and can't take more time off.

How do I get through this? Please don't say one day at a time. I have accepted he is dead. I am dealing with 4 very upset cats still. But his medications- what do I do with them? His shirts are on the bed- the cats want to sleep on them. He had so much stuff. I will sell a lot of the things of value. But I barely could pack to move here and I was healthier then. How do I start boxing his things to sell or donate them without exhausting myself?

Please any emotional or verbal support you can provide will be appreciated- but no more I am so sorry for your situation, or to hear about his death, or "I feel for you" nonsense.

2

Linda,

After my mother died from a long battle with cancer, I took time off from work and just allowed myself to have a break. I'm glad to hear you have someone coming to stay with you for 3 days, are they able to help with any of the tasks you mentioned? It was helpful for me to not try to do everything at once, and just allowed myself the time and space to heal and rest. I have Fibromyalgia and have really been hurting this week too. I'm also still trying to figure out how to cope with the additional stress of this condition, and it makes me so sad when other people think we should be able to do things that we really can't. I hope you can continue to find support in this group and with the few people that are available to you in your life.

3

I think I would reach out for help anywhere I could .i would call catholic charities and / or local churches of any kind and ask for help . I knew someone who was in a particular situation and got some volunteers who came to her home and we were amazed at all the things that were done for her. Reach out in places you would never have thought of and you will be surprised where your help comes from. Churches, synagogues,schools , libraries for some examples. All the best to you , dear friend. Stay in touch with us here . This is all I can think of at the moment . All the best
HUGGGGGGGGGS
Suzie

4

It has been 1 week since my true love, my soumate died. A lot of people don't understand fibro and CFS. My husband did and we found ways for me to have rest, work with my condition yet do what I wanted. He helped me live a fairly normal life. I know he protected me but am just now realizing how much. Things I never had to explain because he set up the situation to allow me to hid any flareups or hand tremors or pain.

Now I am alone. I can live with his death.It will take me time but I feel honored that he way my husband.

I don't know how to pace myself- pack up his things, clean the house, cook (I am eating yogurt with cereal for the most part- easy to put together.

A lot of people have responded with "Everyone has pains and aches but we get up and just do what we have to do." THEY DON"T UNDERSTAND THAT just standing up is hard to do sometimes. Just the few steps I need to take to use the bathroom can be exhausting (still resting lots). I set up the bedroom so there is peanut butter and crackers in her for emergency meals.

Emotionall, I am trying to control flareups but they have a mind of their own.

How do you deal with the grief of losing your husbamd and not just sitting in bed due to pain, dizziness and tremoring hands and wobbling legs?

5

No friends, not synagogue here. County agency will be called on Monday as well as health insurance about a 2x/wk house helper- light cleaning, meals, shopping, and stuff.



suzie said:

I think I would reach out for help anywhere I could .i would call catholic charities and / or local churches of any kind and ask for help . I knew someone who was in a particular situation and got some volunteers who came to her home and we were amazed at all the things that were done for her. Reach out in places you would never have thought of and you will be surprised where your help comes from. Churches, synagogues,schools , libraries for some examples. All the best to you , dear friend. Stay in touch with us here . This is all I can think of at the moment . All the best
HUGGGGGGGGGS
Suzie