I am the living dead

[RockysMom]

So I'm home from rehab, have been for two months. After getting kicked out of rehab for not making any progress, even though I walked for the first time in 16 months (that's not progress because it wasn't their goal for me).

Now I'm having home therapy which is not working at all. I've been home two months and haven't even been in the house! No one in rehab mentioned that my wheelchair wouldn't fit through any of the doors we're prepared me for that idea. So I'm living in the garage. Oh it's a very nice garage, it's finished it just has a garage door. But this is my world now.

I can't use the bedside commode. And that's a useless idea anyway since I require helped us to get on that and I can't get out of bed without someone there to keep an eye on me. My husband has been changing me, changing my diapers that is, and when it's poop, he throws up just about every time. Even though I have the best insurance, long-term home health care is not covered so this is the only option. He's a wreck, I'm a wreck and I'm not really alive, I'm the living dead. I don't get to get up out of bed every day like I'm supposed to to get in the wheelchair do things because there's just too much going on.

I need my husband has to work even though he works at home, now he's been forced to take on the full-time job that is me it addition to everything else he has to do. Right now I'm lying here needing to be changed with the diaper full of poop head pressure sores on my butt. He is sick and doesn't feel well and I'm waiting for him to feel better to come and change me. Then when he does he's going to throw up.

I have an even been in the house in six months. I don't get to see any of my pets. I have one little dog in here with me but I don't get to see my other dogs because there is never enough time for my husband to move things around so that they can come in here and visit. I don't get to see my birds.

And on top of all that, one week after I got home, my very favorite most special rabbit died and I had even seen him yet. My husband brought him in here and said he was not doing well and he died in my arms a half an hour later. Like that was my greatest nightmare. And then with all the comings and going as of therapists and nurses, his most beloved cat ran out the front door on my birthday no less, a month ago and she had never been outside before your life. We've mounted a massive search for her and today we have a canine team coming out to track her.

Then I ran out of my antidepressants A week ago and the pharmacist would not refill it due to a mixup. I have them again now but I spent a week in agony it's not over. I don't know how long it will take for them to start working again and even when they do I don't think it was enough, not a high enough dose.

There is absolutely no hope for me. Tysabri doesn't seem to be providing me with any dramatic recovery. At this point I can't even stand. So I'm 51 years old and looking at lifetime in bed while my husband is forced to take care of me which is so very hard for him.

[Windwalker]

I'm really worried for you RockysMom.
In my usual super sensitive manner...forget the darn rabbit and cat...I mean really?

I've said this before, you have to start using the commode, a bedpan at least. I would not tell you to do something I thought you could not do. You were walking! You must get to where you can stand. That's all I can do...stand. With just a "hand hold" grip from my caregiver/ex, I'm up. Then just simply fall on the commode...in a semi-controlled manner. Get off the same way...chair is moved behind me, I fall back into it. All she has to do is empty the bucket from the portable commode into the real one. I urinate into a plastic bottle...designed for the purpose. Can empty that myself...and so could you.

I'm sorry your home was'nt made accessible. I think that's terrible and shows a certain lack of compassion, care and concern.

Don't give up RockysMom. Your way too young. Your not done yet. When things start breaking down, we face our biggest challenge. (Wait for my next 'Quest for Fire' post).

[Tia1]

I'm so sorry about the death of your beloved rabbit and your missing kitty. I am also sorry that you and your husband are going through such difficulties. I just said a prayer for both of you.

What about a home health aid? Can you sell this house for a smaller, more accessible one? Is there a volunteer group that could help widen the doors at your current home?

Please keep hope in mind. Things can and will get better. This might well be the worse chapter of your life so far, but definitely not the end of the story. I will continue to pray for you and please keep reaching out here. We are reaching back out to you. (HUGS)

I hope your kitty finds his/her way home.

[22cyclist]

Rockys Mom: I am about to go into rehab because I can't walk (TM). I have the option of going home and going to PT everyday, but who at home wants to bring me to PT everyday...nobody. I am sorry about your rabbit and your kitty. Cats have a way of finding their way back home though.

I agree that you need to get PT to help you get back to standing so that you can use a bedside commode. At least your husband can then just transfer you over with a little help and maybe he will not throw up just pouring the contents down the toilet.

Like me we have to learn to take our lives back, even if that means from a wheelchair.

I wish you nothing but the best!
Lisa

[Pipes123]

So I just returned after a month or so away and I see this. Rocky's Mom, I was reading your posts and rooting for you all through rehab and now this? Wow that is horrible. Please take care of yourself.

So, you can't change the big picture. But pressure sores? That's dangerous. Have you seen your doc about it?

You say you have good insurance. A trip to the ER to get your sores evaluated could also get you a chance to talk to a social worker who might have ideas you haven't thought of re home health or more rehab. You need physical therapy to allow you to stand.

Also, is there a handyman or handy friend to widen that doorway? Do you have family other than your husband?

In your situation I would be bothering my primary doc and my neurologist and the ER until someone came up with a way to help that my insurance covered.

Good luck!

[polopuppy]

I agree with the other posters that you need far more help than you are getting. I second Pipes' suggestion of going to the ER to get evaluated. The hospital social worker should be able to come up with better home care solutions for you. If that is not possible, you may need to go back to the rehab facility.

Bad bedsores are a good enough reason to go to the hospital. They can become infected, progress quickly and even need surgical intervention if they get too deep. Bedsores are a sign of neglect. If you are not able to move, you require turning every couple of hours. The sores need to be assessed and treated. There are special mattresses, airbeds, memory foam pads and sheepskin that can help.

There are wheelchairs that fit through standard door openings. This is the best solution to allow you to return to the inside of the house and far easier than remodeling door frames. A garage is no place for you to be living. You are not a car. I think your mental health would improve once you leave the confines of the garage. I know you were not happy with the rehab facility but I think it was a far better environment than what you are in now.

I don't understand why your husband won't take the time to help you on the commode or a bedpan. It would be much easier for him than having to change your diapers. How are you being bathed or showered in the garage? Is your husband unable or unwilling to help you? I don't get the sense that he is doing everything he can to help you or advocate for you. Do you have friends, family or church members that could come help the two of you?

Are your physical therapists not concerned with your living situation, bed sores, mental health and lack of mobility? Have they not offered any suggestions or contacted your physicians? You said that you have no home care but wrote the cat was lost when the nurses/physical therapists were coming and going. What are these nurses doing for you?

I understand your love and concern for your animals but you need to focus on yourself for the time being. You won't be able to care for them if you are not able to get better. Make sure the physical therapists are getting you up and out of bed. Ask for an occupational therapist to come and assess your daily living skills. They can help you find better ways of doing tasks within your home.

Contact your doctor about your depression and the fact that you were without meds for a week. You seem to be very depressed and understandably so. Without treatment, you will not have the focus or energy to get better. You may have to call 911 to get you to the hospital if your husband can not get you there.

I wish you the best. I hope you will listen to the many great suggestions from those that answered your post. We are all worried about you. Good luck.

[RockysMom]

No solution

Thanks for all the responses & suggestions.

I have PT and OT coming to the house although OT isn't coming anymore after Tuesday because not approved after that. A nurse was coming once a week but she discharged me last week. I don't have bedsores but I have one pressure point on one hip but I do my best to keep a pillow under it. I will look into a mattress pad for this hospital bed. The hospital bed won't fit in the bedroom because it is too long. Widening the bedroom door isn't really possible I don't think, because of the stupid design of this old house. It is a small house and we can't sell it because it's underwater and we could never qualify for another mortgage or even rent.

My husband is doing everything in his power to take care of me but he still has his work he must do and he's having trouble balancing that and my care. A lot of trouble. He's stressed out to the max all the time and plus he is having the problem vomiting whenever he changes me, poop or pee, he can't handle either. We have no friends or family closer than 60-70 miles. We aren't church goers. The social worker who has come twice now gave me a list of home health care agencies but none of that's covered by insurance although I will ask the insurance company about that today or whenever they call me back.

Although it is a garage, it is very nice and actually bigger than the master bedroom. This is my studio where I normally would be working. It has two bookcases, a TV, is heated and air conditioned, posters & paintings on the walls. It has 3 doors, one to house, one to sunroom, and the roll up garage door. We would probably get this and the sunroom improved to be part of the whole house before having major remodeling done elsewhere. We have no money for any of that anyway but yes we do know a good carpenter.

Regarding the bedside commode, I'll try to work on that but it takes way too long for me to get on it at this point, like 20 minutes and I'm not even sure I have any control to hold it at all. However, it is a really nice commode I bought. If I have to go, and hubby is asleep, waking him up takes time. He can't just jump to his feet and he has a bad back which makes all this more difficult for him.

PT and OT weren't concerned with my living situation out here in the garage because it's the only option. My wheelchair (which cost nearly $800) is wide because my hips are wide. Anything smaller would be too hard if not impossible for me transfer to. I missed therapy all last week because the company doesn't seem to be able to coordinate their scheduling with when I have a doctor's appointment so I miss my therapy, it's an ongoing problem, it's ridiculous really. I also gained a lot of weight in rehab and more since coming home. 30 pounds in rehab and probably ten more at home, my fault really, my comfort food was Oreos which hubby smuggled in at my insistence. It's the only thing I enjoy.

As for standing, I will keep trying but I've been in bed going on four days now because hubby has been so sick and now he's hurt his back. I'd had a nurse's aide coming twice a week to give me bed baths but insurance cut that off although I requested more help and they said ok but haven't heard from the aide last week so hoping she'll come out this week. For shampoos, I had bought this nifty basin which I put my head on and then we have a long coiled hose for water which drains into the enclosed basin.

I guess it will be months before any real routine is established. It's very very very hard to be optimistic. My husband has way too much on his plate. I'm going to have to hire a nurse's aide to do my bed baths if insurance won't cover it. We are just above the income zone to qualify for any assistance with anything. Plus having to fork out $30-50 for transportation to go to the doctor is really hard. Anyway, thanks for listening everyone. It's just such ** that insurance sent me home the way they did, I didn't get a discharge care plan meeting, home evaluation, nothing. I'm full of despair and my fighting spirit is defeated. I guess we'll start dismantling our lives in the time to come and prepare for the poverty that's required to qualify for assistance. I have spent SO much money on disabled stuff since coming home!

Meanwhile, I'll try not to post too much so I discourage anyone or disappoint anyone who had been inspired by how well I did in rehab. And I'll play the lottery. I never thought all my dreams would go up in smoke at 50. I guess I was childish. It's time to give them all up. I tried to hold on to them a long time but I can't anymore. I'm sorry.

[kellygrn]

Take it one day at a time

If that don't work - minute by minute!

PCP doc has me listed as home bound. That qualifies me for a lot more stuff. Pee - I have use of only one arm so I can't self cath. Have supra pubic catheter. Nurse comes out to change it every 3 weeks. Since I am in bed most of the day, I use the night time pee bags. Holds a lot.

The other end, will it happens when it happens. I don't know when it is coming. But there is a surgery for that also. LOL!!!

Email me with any questions you may have. Address is in profile.

KK

[Tia1]

Don't be sorry, you have every right to express yourself, your doubt, and your pain. Its real! Please know that we are here.

[Seasha]

Don't be sorry, you have every right to express yourself, your doubt, and your pain. Its real! Please know that we are here.

Yes to this ^ RockysMom~

That's why we are here ~ You post away and we'll answer whatever is going on! You have gotten some excellent suggestion - especially from kellygrn

Sending you ((huge hugs)) and prayers for better days ahead
Is that Rocky in your avatar? Beautiful dog !

[Marie12]

RockysMom, I am so sorry you are dealing with this. You just described my life

You just described my life, so I guess I won't have to type and post. It is difficult when the people we have loved since 1975, have no idea what we are going through, why we need the newest electric wheelchair, why we like to go somewhere, even though we have no strength, etc.

I am very sorry you are dealing with this. If I could have one prayer answered, it would be that no one else would have to deal with this. Somehow, no matter how much we publicize, no one really knows what we deal with, physically and mentally. I do know that God loves you, and we will get to have a great time in Heaven. I hope I get up there, because I'd like to get to know you.

[Windwalker]

Meanwhile, I'll try not to post too much so I discourage anyone or disappoint anyone who had been inspired by how well I did in rehab. And I'll play the lottery. I never thought all my dreams would go up in smoke at 50. I guess I was childish. It's time to give them all up. I tried to hold on to them a long time but I can't anymore. I'm sorry.

So now I have to row the boat by myself? Please lose the weight, gaining 40 lbs. was really not helpful at all. Have you given up? A lot of your response just sounded like defeatist excuses.
I need you to start rowing again RockysMom!

[poppydarling]

Just want you to know that I'm listening, too, and I'm just so darn mad on your behalf. This is totally unfair. polopuppy has excellent advice. But before you can start unraveling these complicated problems -- or if I'm being PC, challenges -- I would definitely see a social worker or therapist. They can act as your case worker, your advocate, make sure that you are supported and help make sure that your physical, mental and emotional needs are being met.

I'm sure your husband is doing the best he can, but he can't be objective (and neither can you) about what you need while you're feeling guilty about those needs! Therapists give you that objective support and also help you brainstorm ideas that you might not have considered.

Many therapists work on a sliding scale (I saw one that worked for a charitable organization and only cost $10 an hour). My current therapist is covered by insurance and we "meet" on Skype. I'm usually sitting in my big armchair in my bathrobe when we meet :-) Maybe that would be an option? Wishing you some peace and relief from all that you are going through as soon as possible.

[dyin_myelin]

I'm sorry that you lost your rabbit, I remember when your husband smuggled him in the hosp. My friend loves rabbits and lives in a "pee soaked barn" of an apt. and her husband is ready to leave her. She posts non-stop about Whole Foods. So, even though I'm a dog person myself I realize through her it is possible to have quite a close rabbit friend or laggos as she calls them.

I wish I could visit or send you some take out or do something tangible. You are depressed and justifiably so. One of my psych professors said when you have kids and you change them only breathe through your mouth and that will keep you from getting sick, maybe help DH to try with nose plugs. Someone here suggested if you can't move or exercise to spin your arms around when you watch tv. I got fatigued last week stirring a spoon and I felt kind of like you, that my dreams were eroding because what 38 year old feels like they've hiked Nepal after making chia pudding? I vowed to do at least 5 min. with hands on stationary peddler and resistance band at work. I think tbh it's not really having any effect but I'm doing something I guess. Rehab prob. got yanked due to some insurance bean counter, please don't give up or conversely feel bad if you can't do as much as you like.

[Cat Mom]

I'm so sorry you're going through this. I can relate to your love of your pets, it's devastating to lose one.

I'm not sure where you live but here (Ontario, Canada) there's a great tax credit if you make your home accessible. Even widening the doors would apply.

I really hope things improve for you, please keep us posted.
Jen