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Jan-KS
Member

USA
82 Posts

Posted - Jan 24 2018 :  2:48:50 PM  Show Profile  Reply with Quote
I am really just venting here - I don't see any solutions to my problems. One week ago my husband and I were trading in our SUV for a car I could more easily drive - plus to save a $100 or so on the monthly payment. While he was moving items out of our old car and into the newer car he slipped and fell on a large patch of ice behind our old car. His head literally bounced off the payment and his glasses when flying. The general manage and finance manager immediately went to his rescue - suggested an ambulance - which he declined - saying he just had some knee and back problems. Four hours later I was calling an ambulance to our house because he could no longer get out of bed and stand due to damage mostly on his left side. Test results showed that he had a massive brain bleed being exacerbated by the blood thinners he always has to take due to all his stents and other heart problems (he's had 8 heart attacks). They couldn't operate without him bleeding out. I was told to "see if I can get his family here" All of them except my daughter had their cell phones off but at least I had her support through the first long night.

Now a week later he is still in critical care and a semi-vegetable. Dr's are optimistic that he will recover in time as soon as his temperature comes down. The nurses, however, are rather negative and suggest he may always be in this state. They referred me to a social worker to help me find a good rehab center - but only 1 of the 3 are in my city and less than a 3-4 hour drive each way, so while it's not the "best" it is the closest. Since he's still critical I think they are backing off the rehab center for now.

At first I had the assistance of his children and my child But they have all returned to work in the cities where they live and now I'm on my own and I am scared.

I have yet to drive the new car but am driving my beloved older car - the weather in Kansas has been brutal some days and mild the next. Parking at the hospital includes an entire floor of handicapped parking - I usually get one of the last ones - which is about 1 block away from the hospital entrance where they keep wheelchairs ( at the opposite end of the hospital where he is located). I put two 3-4 hour hour tanks in a tote, attached to one of them and sling it over my shoulder. Put my purse on my other shoulder. I get out of my car and it takes forever to get inside but once I finally make it and IF a wheelchair is available I put all my stuff on the seat and use it like a walker. One of the receptionist ladies had to get a wheel chair for me one day - saw how I was using it and told me to "bring it back as soon as possible so people that REALLY need it can have it." Being end-stage COPD and a having a critically ill husband - I lit into her with a string of hostility and obscenities that I barely even know. How dare she assume I didn't need it. I guess the O2 hose on my face was just an accessory. So I'm managing now to drive to the hospital (under fairly heavy doses of morphine and Xanax) and am able to walk inside before taking a 10 minute or so rest. Then I make it to the other end of the hospital. It is so hard I can barely face the challenge each day. I cry, not just for my husband but because I'm all alone and I am scared with nobody to help me.

Last time my husband had a heart attack (around Christmas) he actually talked to a patient advocate and they told him that the staff could leave or meet me at the door and a security guard could assist me to my car. I've requested this service several times, only to be given blank stares and told they cannot take me from the hospital to my car. Could I take Uber or a Cab ride - of course - but money is a factor as is time. (My last wait was over an hour and my O2 ran out) Some suggested the handicapped busses but they have to problem of taking as long a 2-4 hours to get you too your destination depending on how full they are.

The other issue is how long the tanks last. Until the other day, a nurse would just automatically put a big O2 tank on the back of the wheelchair or plug me into an O2 receptacle in his room to spare my tanks. One day I had to ask and literally got my ass chewed out with the nurse (and later the patient advocate) telling me these nurses should have lost their jobs by giving me extra O2. My O2 supplier came out and we could not find a way that I would have the strength to lug a cart of bigger tanks behind me - or any other solution. Again, I've just been shocked at the way I've been treated. I now have to limit my stays with my husband.

I'm also so lonely -watch the man I love shiver uncontrollably (due to their efforts to get his temp down). It looks cruel and is cruel. Talked to one of the kids about signing a DNR if - after a few months - he's not going to improve. I know he would NEVER want to live like this. They are all adamantly opposed - as if I'm going the euthanize him immediately!

How do I get through this? Just toughen up and take It? I've tried being nice, polite and understanding and I've also tried being a b++ch - neither work. I sort of get the idea they would just as soon as NOT have visitors - we are not welcomed.

Jan C

sslei
Member

100 Posts

Posted - Jan 24 2018 :  4:28:05 PM  Show Profile  Reply with Quote
What hospital Stormont Vail....Well you certainly have had your "monsters" for lack of a better word to contend with. I hope things will get better for you , I couldn't help a moth get out of a paper sack most days. Did you get your cannulas hope they were okay for what you wanted . I just don't like the slider. Keep us informed , the least we can do is listen and maybe reply.
Sandy
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sslei
Member

100 Posts

Posted - Jan 24 2018 :  4:42:35 PM  Show Profile  Reply with Quote
Have you ask your doctor about getting a placard for disability parking I looked at the Kansas form and it refers to using oxygen, I got mine here in Texas and its a permanent one. I have not used it that much , only use it if I have to get out not if just my husband is getting out and I stay in vehicle.
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tsainta
Contributing Member

USA
1765 Posts

Posted - Jan 24 2018 :  6:03:03 PM  Show Profile  Reply with Quote
Have you considered calling the patient advocacy office and speaking to someone in charge so you could get the straight word on what services are and are not appropriate? You might improve the response by describing your specific situation to someone with some authority.

I they are not responsive, does your county have some office that responds to the needs of seniors? They also might help.

Tony-CA

50% of dealing with COPD is common sense.

Edited by - tsainta on Jan 24 2018 6:05:18 PM
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faybees
Member

USA
150 Posts

Posted - Jan 24 2018 :  11:31:22 PM  Show Profile  Reply with Quote
I have been going to PENN in Philly for my evaluations for transplant. We use the valet service, it costs us $11. There are wheelchairs all over the place with oxygen on them, I use them every time I am in there because I would not be able to walk as far as I have to go to the departments I need to be in. If my husband were not with me then there are people who will wheel you where you need to go and bring you back again. There are also buses from the surrounding parking garages that come and go quite frequently. You need to speak to someone and explain your situation and get some help. Sorry to hear about your husband, I surely hope he recovers from this.
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Jan-KS
Member

USA
82 Posts

Posted - Jan 25 2018 :  02:53:32 AM  Show Profile  Reply with Quote
faybees - sounds like you have an awesome hospital. Yes I'm at Stormont Vail in Topeka. Yes I have a Handicapped placard - unfortunately the walk from the handicapped spaces to the front door is about 1 block. The worst night was the 20 below zero wind chill. I thought I would die trying to get back to my car - I could not catch my breath - my air hose stiffened, froze and fell off my face - and there was nobody around that would have even noticed me.

I have talked to a patient advocate and she confirmed everything I've been told (no O2 allowed to be given to visitors, no assistance from the parking lot to the door.) I've know this woman for over 30 yrs but the attitude was "too bad, so sad" but said she'll make note of it for when they discuss future services they can offer visitors. The other hospital in the city offers "valet" parking, however I have yet to locate a valet the dozen or so times I've been there. They have even fewer handicapped spaces - unless you like to park in a parking garage about 1 block away from the hospital.

One positive thing is that I located a 4 wheeled small shopping cart I bought for my husband years ago when he struggle to get groceries in from the car to the house. It folds up flat, will carry 2-3 portable air tanks and my purse. Now I can at least load up in the parking lot rather than have to carry everything to the door. Nothing I can do to control the weather.

We do have Jayhawk Council on Aging but they do not deal with business policies (unless, for example, they lack the minimum required handicapped spaces) each business is allowed to set their own policy regarding how they treat their guests. I guess the idea is that most places WANT to have guests/customers while hospitals would really prefer life with out them - we are always in the way.

I went from not driving (due to all the drugs I take) to driving daily under the influence because I have no choice. Thank goodness I'm a safe and good driver. This just all seems so strange to me - I had to even look up when to take the trash out because he always did those things. (my sweet neighbor did it for me instead - without me even asking). My husband and I always kept our finances separate (for this very reason) - but now he needs to file bankruptcy and I can't complete the paperwork because I have no idea who he owes. Starting to get collection letters and calls on MY cell phone number. Keeping an eye out in case anybody sends a court order to garnish the wages in his bank account - I'll have to represent him in court - telling his circumstances - plus the fact that 2/3rds of his income is Social Security and not touchable.

I also contacted a Personal Injury attorney in case there are expenses not covered by our insurance and he said that if he files bankruptcy it will hurt his case - I guess it will make him look too "greedy" for money to get out of debt, so that will have to wait. My finanaces are steller but I stil rely on him to help me pay the all the household bills so I don't dare let his credit card companies take him to court. That's when I suggested bankruptcy so he would have some protection. Originally he took on a part time job last December but had heart attack number 8 at work so we decided that he cannot work for now to pay back his debts. So I guess lets cross our fingers for a huge settlement from the car dealer's insurance company - making Bill able to pay off all his bill and hopefully find a smaller house (with maintenance) to move into.

Sorry again for venting - the stress is just too overwhelming and I can't handle it any more without some emotional support from somebody - and right now there is no one in my life to provide it.


Oh and to top it all off I hired a handyman to peel wallpaper in our dining room and then paint it. And also to remove the wallpaper from our guest bathroom. He did a great job painting (except he kept having crisis's that required him to ask me to pay more money up front). The wallpaper removal in the bathroom was horrible - he took the top layer of the drywall with it then mudded it as if we were going to lay tile rather than wall paper - didn't have a clue how to use wallboard tape. My husband talked to him briefly (this was before he was ill) and asked if he could refinish our hardwood floors (I'm in the background waving my hands trying to shut him up). So he agreed to do that for a reasonable price. But all he's done so far is sanding and didn't even get all the varnish off or sand down to the white oak so it could take a new stain color). I gave him money for the supplies and I suspect when the time comes he will need extra money for the supplies because I bet he's spent it all. Now I can't be home to supervise his work and I won't allow him in our house without somebody there. So my house is half emptied of furniture - driving me nuts, as well as the pets and just being a big stressor. He calls EVERY DAY for what reason I don't know because he always has another job going. Once he asked to borrow $175 to bail his son out of jail on a DUI (I said no) - If it weren't for my lungs I'd do it myself - I think I have far more experience than he does. This was all to help make our house sell better because I think we need to downsize some.

Oh and then, my ****ty father had always promised me the duplex he owns (had a quit claim deed already to go) as soon as they moved out of one side. We'll now they've moved to the most expensive retirement community in the city and they are selling the duplex. Living in one side of it would have been perfect for us - while collecting rent on the other side. I only suspect my step-mother is stopping him from giving it to me but then I remembered he also offered to by my daughter a new car when she graduated - and that never happened either. So tired of people letting me down.

As far as the outcome for Bill - all of them scare me unless he's going to be 100% what he was (which was disabled but still helpful). They are already taking about rehab facilities and wanting me to take him to one in Lincoln Nebraska (quite a drive from Topeka Kansas). There is one here that has a specialist for traumatic brain injuries so that is where he will have to go. They're already talking about this and he's still in critical condition, needs a bi-pap to breath, is running 103 degree temperature, is being tube fed (he can't swallow) - for a while he was responding to basic commands but in the last two days - no response. He doesn't seem to know me at all. The surgeons say he will likely recover fine - the nurses and social workers are planning on him being a vegetable.

Jan C
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mziegler
Member

USA
98 Posts

Posted - Apr 14 2018 :  7:11:30 PM  Show Profile  Reply with Quote
Jan, I can really relate to your story. My husband had a brain anurysm that required surgery. The Hospital is about an 1 1/2 hours from our home. We came in early in the AM. I was able to get volunteers to wheel chair me to his room after surgery, but also was told I couldn't use the in room O2. Well needless to say, I had to leave as I ran out of O2. I wasn't able to stay with him and simply returned to pick him up when discharged. I understand the Hospitals rules, but it is just another hurdle for us that are oxygen dependent. Hoping things work out for you.

Melissa
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