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Jan-KS
Member

USA
84 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

105 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

105 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
1798 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
152 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
84 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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Jan-KS
Member

USA
84 Posts

Posted - Jun 12 2018 :  5:15:05 PM  Show Profile  Reply with Quote
An update - looking back on these posts I am still feeling the pain. We (actually his kids decided and went with what they wanted) decided to put my Husband on "comfort care" on January 28. I watched as they removed the feeding tube and other devices. He didn't have to be kept chilled all the time to keep his temperature down. All that was left was the bi-pap assisting his breathing. I had "talked" to my husband early that day - I asked him if he knew who I was - he said "my wife" - I told him how much I loved him and he said "I love you". This was why I wasn't ready for all this - he STILL had brain function left - but their care was horrific for him keeping his temperature down by basically packing him in ice removing all blankets and watching his teeth chatter. Multiple doctors said he would never recover. I think his kids were just tired of the serious drain on all their lives (one has 5 small children and lived 3 hrs away - one is several states away and can't afford to miss anymore work - etc. Only I could have been there nearly ALL the time if it hadn't been a problem with having enough oxygen with me. No way could have have transported enough O2 canisters and walked the great distances needed in the hospital. My dad can no longer drive due to his heart issues. I am alone.

So I called all the kids back in the room and they took him off of bipap. Within 30 minutes he passed away - I was sick with grief - still am. My dad did finally decide to NOT sell his duplex and allowed me to live in the vacant side but he never made it a gift as many times promised - I do pay a reduced rent and for that I am grateful.

I'm doing TERRIBLE on my own - I have so many panic attacks from over exerting myself it's unreal. Not a day goes by that I don't consider suicide. But I have my daughter getting married this fall - and I have two elderly pets in poor health that would be lost without me. So suicide is just such a self-centered thing to do.

I now however have to get myself everywhere - everybody I know works full time. I can't count the number of times since my husband's hospitalization that I've collapsed outside a store or doctor's office due to panic and the extreme weather we have here (the heat index today is over 100 due to the high humidity. I spend my time at home constantly trying to keep it clean (dog and cat shedding) - vacuuming is so exhausting. My elderly dog has accidents every time I leave the house or there is a thunderstorm. She can barely navigate the 3 steps from my deck to the lawn to potty so she potties on the deck. More clean-up for me. I have to add pet safe chemicals to the deck weekly to keep the odor down. She needs to go to the Vet but has to be lifted in the car (she's about 65 lbs) - I have to lift her into the bath tub to bathe her with antiseptic shampoo due to her skin condition. No I DON'T want to put her down she still is relatively happy and medicated (she's diabetic and has low thyroid and arthritis - she is a Basset Hound- so joint and back problems are to be expected. I LIVE for this dog but can barely care for her or myself. Luckily the cat is in excellent shape

I have my groceries delivered for free but need to "tip" them - the only store offering that is way more expensive than any other grocery store. My pharmacy doesn't deliver so I need to switch to another one that does (I have 28 medications right now and I really hate giving up my pharmacists that understand my situation).

I go to a therapist once a week. I felt like I was dying in the heat trying to get there. The car my husband insisted we have does not cool very well in extreme heat.

I'm in palliative care - but I can't get into their building due to no parking available (they agree the parking for handicapped is horrible but the design makes it so there is nothing that can be done) - I collapsed in the lot one day and a nice young man got me a wheel chair and wheeled me to my appointment, They got me a walker with a chair (so I can sit down if I need to or use it to transport my purse and O2 tank(s). I just tried it - I'm not strong enough to lift it out of my car - especially during these hot humid days. I'm sure if I call next visit they will send somebody with a wheelchair to get me to the appt. In the meantime - I'll be having panic attacks in the overly heated car and lack of shade waiting for them to come get me.

I feel like I belong in a nursing home - but that would be ridiculous if you saw me - I can do most of the housekeeping myself (In fact I just packed EVERY box from my old house by myself to get here and had an estate sale for the rest).

I still haven't convinced the social services that I need support at home (for example they want me in occupational therapy but I can't get to the appointments and they won't approve one to come to my house so I doubt I will end up going.

It takes me forever to get my trash bin to the curb on trash day. It also triggers a panic attack due to my air hunger.

I'm on morphine, fentynl, Xanax etc., for air hunger - God forbid if one of those drugs wears off while I'm out somewhere - the air hunger would be terrifying.

Yes I have extreme (and overly active) anxiety and severe depression but I do want to maintain my independence - it's the damn weather and my Air Hunger issues that seem to be the center of my problems. On the other hand, given the drugs I take - should I be driving anymore?? I have fallen asleep while EATING even, they have me on some anti-narcolepsy drugs but I fight to stay awake when driving.

I have a wrongful death suit I'm waiting for on my husband - they want to wait 6 months and then have me open an estate for my husband so that his (numerous) creditors don't have time to grab the settlement money. My attorney (well experienced) said we have a very strong case but the Car dealership's insurance company is refusing all responsibility for the ice on their parking lot that caused the death of my husband. Perhaps if I get enough money I can at least afford to buy a home that is maintenance free so I don't have to worry about yard work all the time. But the attorney says it could be as long as 2 yrs before a settlement is reached or we go to court.

Sorry for the overly dramatic venting - that's the anxiety causing that - but damn it - when nearly every breath you take is a struggle you are going to be anxious. Watching my husband's last gasps for breath after they took him off bipap and until he died is a recurrent nightmare)

I'm sure I'm probably asking for pity here (I certainly don't get it elsewhere)so maybe that is what I am needing. I'm not asking for help (although people may have suggestions for me - keep in mind I'm on a severely depleting budget since my husband died I don't know what I'll do if I don't get a settlement) But I'm sure many of you can relate to all the repercussions this illness can have for some people. I feel like such a baby now I don't recognize myself (I was always self-sufficient,independent and VERY hard-working). So I'll cry a bit now and feel sorry for myself - then pick myself up and go take care of my pets and my home. Thanks again for the place to vent. I feel better now.

Jan C
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