When you're the only caregiver and you get sick, how do you cope?

Took care of my mom post stroke for nine years until the last fall two years ago when she needed hip replacement. Anesthetics caused her problems but she recovered after some physio although she couldn't get back home with me as she needed a lot more care and is now in elder care facility. I have a sibling but away so I'm the only child and there to visit and give support every day. From daily living and observation and lots of research appears my mom has lewy body. On the days I work she has a real hard time because she can't get a hold of me during work hours. When I'm home we speak several times until I go to her. I feel terrible of how things turned out for her at this age. It may have all been hidden all the years by keeping herself busy and now with all the time on her hands it's come to the surface. The place is excellent and has a lot of activities but mom doesn't want to go a lot of the time prefers to sit in her room waiting for me and worries herself sick and becomes extremely anxious. No friend can go instead of me. It is a problem for the obvious reasons. I feel worn out but it's like having toddler with special needs; I want to help her and be supportive to the staff - they too rely on me too much but she feels better when I'm there. How does one get their loved one in this situation understand that they need time out too so they can maintain health and continue to support them? I understand everyone on this forum in the same situation. it's not easy. Love to you in caring and sharing of yourselves.

Oh goodness, can't believe I'm not the only one in this situation. Can't afford any other alternative and my dad is getting worn out. Just found out have to surgery on one of the cysts/tumors (as there seem to be several of them) and also having back problems, stomach problems and low grade fever. Even filed for disability and got denied, appealed but may not know anything til March 2013. It's very frustrating with the holidays coming up and trying not to get all flipped out. Actually can't type much anymore either. Wish I could be more positive, but it's just not there today.

This is wonderful. All fingers and paws crossed here that everything works out. And I hope the surgery works miracles in getting rid of the pain.

A quick follow up for now, thanks to those who read and responded to my post!

I had been advised to try contacting Hospice. When I called I was told the social worker would not be back until Monday and they took my information. Today I found a website for the local organizations, it included a request for info and contact section. I gave my info and a personal letter explaining my situation. Within two minutes of submitting my phone rang!

A very nice lady took a little more information and is sending someone to our home in the morning to see how they can help! I'm not yet sure if this is the answer, but what a relief to have someone listen and offer to help! I am praying we can work something out and get my father cared for and I can move on to surgery. So strange to be looking forward to, and have to fight for, back surgery :)

I will be back to update further, thank you all again! I wish I had found this community earlier and wish the best to all of you and your loved ones!

What a great idea "care giver needs a break club"

Wow this is an older question but a great one at that. This gives me an idea though... I am willing, now that my Mom is in a NH, to help others in this type of situation... just because I know the feeling of no help when you really need it. I work a lot myself, but, anything I can do for someone, even if it's pick up things from the store or do laundry or just give a care giver an hour break, but when I offer people I know going through this and they seem like I am not serious or they are just afraid to ask. I am truly willing but or society is having us believe that if your nice you want something or it's just out of the normal so it's unbelievable. So... I don't know how or if it's possible but i'd like to start a volunteerism group for a "care giver needs a break club" any suggestions on organizing this sort of thing?
Oh and I can't end it without a Mom story.... One day I wasn't feeling too good and Mom was watching a Tv show peacefully (beginning stages dementia like impossible to keep up with her energy level at this time) so I laid next to her on the couch (she was always a sweet Mommy when I was sick before dementia) and I said "let's take it easy today I am not feeling well" She says " I don't care!!!" I thought that would work..OH BOY, what was I thinking LOL!!! So a few minutes go by as I was just getting paler by the second and moaning She say " AWW you don't look well are you OK? Can I get you anything???" I was like WOW Mom is back!!! ? I gotta milk this one... that's when I realizes when I was telling her in a way she was the one sick it wasn't OK because she needed me... she was more comfortable when I needed her!!!

@lavanilla Can you get Hospice in for him? I feel for you as I just had my third back surgery and never got recuperation but in the hospital. I did what I had to do but I am paying for it now as it is hard healing. I pray for you to get some help because this is just not good for you either. Get a note from your doctor stating you can not tend to your father and give it to His doctor. They have to do something to help you unless someone you know can come and assist. If you have to stay in a rehab for sometime after your back surgery who would be there then for your father? Thinking of you and your situation.

I am bewildered as to this type of situation. I am my father's only caregiver, he had a stroke a couple of years ago and has other chronic health problems. For the last two years I have been with him daily, taken care of every need, in short I handle everything. Being an only child makes this very difficult as I'm the only one to care for him and having multiple sclerosis myself only adds to how hard this truly is.

Now, after fighting through two months of severe back back I am facing emergency surgery for a severely ruptured disc. Problem is I can't leave him alone to go to the hospital for a couple of days. This could be worked out to some degree, but I can't come home and begin taking care of him again immediately. I need 3-4 weeks of rest and recovery time.

I've spent the last three weeks bedridden making phone calls trying to set up a respite stay for him in a facility. While there he could also receive rehab he desperately needs. Outside of paying $2000-$3000 per week out of pocket I can find no options. That sum of money is impossible. I was told to get him in the hospital for a three day stay, even Medicare recommended this, and then transferred to a nursing/rehab facility. Unfortunately his family doctor felt there was no acute reason to admit him to the hospital and instead handed me a brochure for self paid assisted living, even though he agreed my father needed the rehab as he is weakening under my care with my back limitations.

I am lost and facing canceling my own surgery, though I do not know how I will continue on like this. I have only been able to get to my doctor regarding surgery and his doctor hoping to arrange the hospital admit. Otherwise, I am basically helpless. Useless to my father and myself.

He requires too much care for in home services and I need to come home to a quiet house to rest and recover before bringing him home.

It is shocking to find that there is no help out there for situations such as these. A simple few weeks respite stay. I have spoken to every agency and case worker possible and even they are at a loss. As am I.

I'm really worried about this, and I've woken up in the middle of the night worried about maybe needing to go to the hospital for something severe, and not having anyone to step in. So I'm going to call a service at least, so that even if it's expensive, our family friend can call and arrange for someone to come stay with my mother while my sister presumably drives over. All my mother would have to do is remember to call our family friend. I guess one must develop a plan. I'm sure you like I couldn't afford to hire an expensive service because you have stomach flu, but maybe you could have two sources on call (I think this is what I'll do): somebody "low tech" who can do stuff like bring something to eat and just be around to sit a while; and the nuclear option, somebody who can come and be there during a serious emergency until other arrangements can be made.

It's very hard I agree especially if you have major medical problems yourself, my son who is 16 (terminal and completely crippled) is a pleasure to take care of and very understanding when I say i'm just not feeling good today so bare with me here's the urinal, breakfast this that whatever he needs call me on the baby monitor if you need me i love you but I have to rest, though my mother in law who is 87 with no senility, demantia or health problems except long healed hip replacements is a self centered nightmare,I don't care if you have heart disease and need to rest she says, "My coffee was was three minutes late,I want my legs shaved, me, me me." Now this is someone my husband & I had to downsize sell our home to take care of,sacrifice my job lost my health insurance and are on a fixed income to pay all the bills,run around treat like gold dedicating every exhausting moment of our lives to,never get a break from, but the one moment our backs go out we don't have a right to be bent over and demands we jump through even more hoops.At first we didn't know how to react, it makes you angry at the ungratefulness and then to hear her say you don't do anything for her to get her way with guilt,but you can't linger on every little detail give in, get hurt or upset, you just learn to stand strong, ignore what's inumportant, laugh about it, no point in crying, make your own schedule that works have a lot of patience, faith above and hopefully they will eventually learn to adapt as ours did.

You know something? It is amazing what we do when we HAVE to. Sometimes that is what it takes! I feel for you in this difficult situation, but look what you have learned and bless you for helping others with your newfound information. You are a very special person. Hugs.

Wow, this brought back memories. A few months after my husband was diagnosed with Lewy Body Dementia and was having severe symptoms to the point where he needed pretty constant supervision I became ill. Turned out I had undiagnosed diabetes but my doctor was treating me for anxiety. One of the many pills she tried knocked me out and sent me to lala land. OMG! Somehow I managed to call through several family phone numbers. The first one that answered was our young adult grandson. I told him I was too sick to take care of Grandpa. Would he stop and get some sandwiches and come stay overnight? I hung on until he arrived and then I don't remember anything else for about 16 hours. Yikes!

Do you have any relatives in the area, even a second cousin once removed? Has a neighbor said "If there is anything I can do, please call?" Do you belong to a church or civic organization that has an emergency aid committee? When I've been less ill than the episode I've described, I've called upon neighbors to please bring in some soup or takeout that my husband likes.

It's a problem, for sure.

B:

3:35am. A fight on the street just woke me up, so I went online to vent with you guys. I've also been sick with a stomach virus, but a couple of my co-workers have this attitude as if "How dare I get sick?" Then another one, coughing and sniffling all over the place, smuggly lectured me about "taking better care of myself to keep from getting sick." What they don't seem to understand is that some of these illnesses sneak up on you, especially when you've been feeling run down; which makes them even harder to get rid of. A doctor might give you something like Imodium, but stomach viruses need to run their course. You've heard of it before: "Treat it, it last 7 days; leave it alone, it lasts a week." Same concept.

Whomever you're taking care of, let the person know you're not a 100%. Who knows? S/he might give you some tips to feel much better. Until then, slow down a bit, drink plenty of fluids to flush it all out, and pick on something (food) throughout the day so you can replenish that energy.

Here's a hug. ...

-- Ed

It is not easy, that is for sure; but don't expect any sympathy or breaks if your parents are anything like mine. My needs don't much matter it seems, until they feel threatened that I may be getting too sick to care for them. Take care of yourself, find backup, especially if the money is there for it!!!

When life is sucking big time it is hard to care for others. In my case, I have limited to no backup resources myself, so I just try to ignore my needs and push through to get my parents needs done as quickly as possible... and then take care of myself. You need to take time out for yourself, and I am looking for alternative resources like Visiting Nurses to fill in the gap. Be good to yourself.

I recently had that same dilema. I was lucky in the fact that my hubbie could help. If you don't have a back up you really need to find one.

It sounds ti me that you need an alternative plan in case you are unable to give the care that is necessary...
Best to you on your caregiving journey.