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Up Coming Care Meeting



Ever find that you have kept far too many concerns too closed mouth and just HAVE to dump all of them out on someone? That is where I was yesterday. I have no support network. My children are young adults and just do not “get it” so I rarely use them as a sounding board when it concerns Dick’s care. In addition to their youth, they tend to want to protect me from having concerns about Dick not realizing that that actually adds to my distress. Therefore I periodically spew everything out on poor Richard. There are three things that happen when I do this. Most of the time, it all goes over his head but at least I have talked it out. There have been times that he has gotten extremely upset because under it all he wants to protect me as well and he gets frustrated and confused. This is the main reason so much is held back from him. Then, there are the now extremely rare times when Dick has this flicker of complete comprehension. This was the case yesterday. And when I had finished my tirade he replied, “I had no idea you were under so much.” It didn’t fix anything but for a few glowing moments I had my partner back. And that felt so good.


I have blogged many times about the distress I have with the lack of care Dick receives at the nursing facility he has been at for a year and a half. Now after three months wait, I have a meeting on Wednesday with all the lead staff as well as the state ombudsman. I must prepare for this visit and I am battling the feeling that instead of having the ombudsman on my side she is only going to support the nursing home. She refuses to return my phone calls and it was the nursing home social worker who arranged to have her at the meeting. In the end I feel like it is solitary me against a big organization. And I am frustrated to think that just maybe they have done the very best that they are capable of doing. If this is true then I do not think any facility will be able to care for my husband. After all if it is truly his refusal that is keeping him from being cared for then that will be true anywhere.


The only option that has been presented to me thus far is Delaware’s “Money Stays with the Patient” program. In this program they attempt to send a person home while still providing the financial support so that outside care is paid for. My understanding is that Dick would be eligible for Day Care, plus home health aides to provide showers etc. But reading a bit deeper I learn that the only Day Care facility in this area is open only weekdays from 7:30 in the morning to 4:30 in the afternoon. Dick is a late riser and I can imagine that he would not really be ready to leave in the mornings until 11 or even 12. That does not leave much time during the day to fit all my doctor appointments and PT. And there is nothing available on the weekends. In addition these benefits apparently start disappearing after a year. So what good does that do me?


In the real world I am rather stoic and rarely complain about my lot so blogging has become my place to whine. The truth is that I have so many concerns about bringing Dick home. I plain do not know what the right choice is. I placed Dick in the home after he became occasionally aggressive to me and my teenage daughters. The girls are older and nearly out of the home so they do not figure so much anymore. Dick does not seem to have those aggressive bouts anymore. Furthermore he is so much weaker that he cannot even walk without assistance. Aggression therefore can be walked away from. Still, my back has not recovered from years of lifting then being in a car accident.


So, partly as an experiment and partially because I just wanted Dick around for a while, I brought him home to spend the night yesterday. I wanted to see how we would do during a time when my back was less than its best. I have to say that I was appalled at the decline that I found in his ability since the last time I had him at home. It is apparent that I would HAVE to have a wheelchair ramp put in because I could barely get him up the three steps into the house. And I would never be able to get him in and out of the tub unless it was converted to a shower. I all ready had learned this summer that taking him out into public is something that will have to be rare.


Instead of dropping everything and spending all my time with Dick, this time I continued most of my regular daily in house activities. Dick was content to sit alone in the living room and really did not prove to be a problem whatsoever. The only challenge that I had was when it was time for diaper changes. It meant lifting him up and supporting him plus a lot of bending. It didn’t feel so very well! But I did learn that even though I didn’t change him more frequently than every 5 hours in the day and 9 hours over night, he never had the slightest leak. I can only imagine how long he must be going between changes at the home in order for him to become so sodden.


Of course we had that refreshing heart talk and it is simply wonderful to have him there just to lay my head on or hold hands, those simple acts of affection that we all crave. But this was a change of scene for Dick whose daily goal is simply to come home. When he was home he was always pushing to go somewhere. When he was home he refused to consider day care. When he was home he didn’t like or cooperate with some of the aides that came in.


So I am in a dilemma. My children are very quick to tell me I cannot bring Dick home. My parents are on the same page. But not a one of them has any concern for Dick. And his needs cannot be ignored. I just feel that it is wrong to toss aside people because they have become old and sick and do not fit into our idea of how people ought to behave. How do I balance my life and his? I don’t believe there is any easy solution. I just hope there is something positive which comes out of Wednesday’s meeting.


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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

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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.


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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.

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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

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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.

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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

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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.

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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.

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