Ruth: first of all in regards to tomorrow's meeting: absolutely nothing you have posted here is beyond or more than expected of good, quality care. I reread all your posts. All you are asking for is some common decency and quality nursing care. Stand your ground, I do not care who tries to smoke or reroute you. Stick to your points and get an answer: I want him checked and changed every two hours as required by your licensing, I want a skin care check on him every day, as required by your licensing; I want him in his own clothes, warm and dry-common human decency. I want his meals set up for him and within his reach. He is not to be rushed and if something needs warming over, so be it. I want him out of bed every morning, in for a nap after lunch and out of bed for dinner. I want his bowels monitored and for it to be documented that he goes at least every 3 days, as required by your licensing. I want his pain levels checked every four hours and for him to be medicated and the results of that medication documented within one hour of receiving his medication, as required by your licensing.

As for the home stuff, bit more serious now. I deal with the ramp, WC and incontinence, but keep in mind Bruce is only 2 1/2 years post and we are still on the uphill. He transfers beautifully with little assistance: WC, Bed, shower chair, toilet and can stand for urination with the grip bar. My BR is already converted to a handicap, designed for Bruce's specific needs-big bucks. No tub, shower stall only with minimum lip.

You must be willing to walk away when Dick refuses to work with therapists and aides, but you are correct in that at the end of the day, you will be required to make sure he is clean, dry, fed and into bed. If you feel in your heart this is doable for a few years, sit down and work out the needs, costs and in reality what you will be required to do physically. Only then will you be able to get a clear picture.

You are to be commended for taking him home for the overnight. I can see the smiles on both of your faces. So glad you enjoyed your time together and the naysayers stayed away. Prayers, Debbie

Debbie, I went to bed very early tonight to be sure to get enough rest in before this meeting. But my phone let me know that you had added this comment. After reading it I promptly printed it and added it to my notebook for tomorrow. It feels good that at least someone "gets it". Thanks for your input.

I cared for Dick at home for 5 years before placing him into the nursing home. It took its toll on me for sure. I'd rather not have to risk bringing him home but I will do it if I cannot have his basic needs addressed elsewhwere.

Ruth

Update!

Today's meeting lasted for two hours. Instead of all the staff that were supposed to have attended only two showed up plus the ombudsman. We occomplished nothing other than getting the ombudsman somewhat up to speed on the situation. We are to meet again in two weeks.

Ruth: I did not respond last night because I did not want to wake you up again with just some afterthoughts about the home situation.

So, hopefully someone took notes and the Ombudsman is up to speed. That is a positive. Everyone starts from today on the same page. If and when these issues come up again, there is no starting from square one! Good job and I hope you toasted yourself. If Dick is that continent, he should NEVER be wet. Overnight continence is incredible in a stroke victim-trust me.

I understand that need and want to just have him next to you. I could not wait until I could get Bruce out of the hospital bed and get our own bed down on the first floor. There is nothing like that feeling. I do feel your loneliness, especially since Bruce goes to bed so early. These nights are so long, but after 10pm meds, I have him right next to me.

Ramps: consider the aluminum ones, do not require a building permit. No wait, measure one day; up within a week. Power chair is a consideration if you feel he can manage it mentally. Home health is tough. Seems like someone is always a no show. I have private paid help and again Bruce is an easy transfer and can balance. So if PT could just concentrate on transfers and holding up himself with a grip bar, rather than ambulation; that may work.

Just a few things to consider until your next meeting. I am hopeful that the SNF will respond quickly and that things improve, so next meeting will be positive. Thinking and praying for both of you. Debbie

Debbie, Good tip on the ramp. The irony is that I bought a mini-van with a hitch in case Dick would ever need a power chair but I sold it this spring thinking we would never need it. Isn't that the way things go! Looks like we would be able to get home health from the VA like we did the year before Dick went to the home plus that which will be provided by this new program. He would also be eligable for day care. It is a lot to think about. If Dick came home we could have his last PT come to the house and Dick really cooperated with Joe. That would get a LOT of Dick's strength back. But will see what the next two weeks bring.

You know I am praying for you and Dick. Again, in my heart I know it will feel right in your heart. So you keep your notes and just see what happens in the next two weeks. And thank you for the mention of the minivan with hitch. I was just wondering today what one did with the power chair on out trips. It is getting so hard to get him up and down the ramp and the scooter does not fit through the front door. Leo is going to work on that this winter. Thinks if I move the arm rests, that will work. We shall see. Always a problem.

Let me know how things go please. Debbie

I will let you know how it all turns out, Debbie, and thanks for the prayers.

When Dick was still home I also had a couple of teenagers left in the house so a van made sense. I had a Honda Odyssey with leather seats. It was ideal for Dick. Leather is so much easier to slide on plus it has the advantage of quick and easy cleanup just in case. That van had a drawer under the passanger seat large enough for wipes, pull-up and underpad as well. The height of the seats meant no lifting while getting Dick out of the vehicle. And the door opened wide enough to swing stiff legs in. He could fit in the backseat as well. We never got a power chair but I had the tow hitch wired so that if we had, the chair could be plugged in and recharged when travelling. As it was, getting a WC in and out of a van is much easier than a trunk.

Ruth, I am out of the loop as my internet is down, probably cable problems. I will follow it on Trve's computer till mine is fixed.

Now i am looking at options with Ray I am wondering whether these will be my thoughts down the track.

(((hugs))) from Sue.