G goes to hospital tomorrow

After the call yesterday regarding requirement to discontinue the blood thinner coumadin in order to increase the blood clotting before surgery, it got me worried.

Well, first of all, there was nothing said about taking Plavix, which we should get in the mail soon. So G wanted me to call about that.

When I phoned, I also mentioned my concern that whenever they take G off of blood thinners before a procedure, he has a TIA. So, the nurse told me to phone the primary care Dr. about this concern. I couldn't get him, but left a message, which, apparently, prompted a lot of between the various Drs.

Long story short, they want him to be admitted Friday afternoon, and they will put him on heparin, which does not stay in the system as long as coumadin.

The other things that will probably happen tomorrow, if history repeats itself, is that his catheter won't run for dialysis. If this happens, at least there will be some preparation (I hope) in case this happens.

G doesn't want to spend the weekend in the hospital, and I don't blame him, but he also stated he doesn't want to have another TIA, so at least we agree on that.

Keeping fingers crossed for tomorrow.

Thankful for the little things

When talking with one of my friends today, I realized that as bad as things appear to be for the future, the current situation is not all that bad.

G does not feel bad. He enjoys eating, does not have trouble swallowing, which, after a stroke can be a huge problem. He is sleeping through the night, which he had not done since we met.

He can walk around on his own, get up and down from the bed, chairs, etc. He can see, and read.

Although he cannot type or write, at least he can see and read. His father lost his eyesight at around 62, the same age G is now.

G is at dialysis now. It's past 2:30, so I am assuming the catheter worked at least enough for them to keep him there.

The surgery department at the VA phoned this morning. Said G is scheduled for surgery on Monday. So, I guess my talk yesterday with Dr. M had some affect. At that time the surgeon said he would do the surgery in a couple of weeks. So, at least that got moved up 1 1/2 weeks.

Well, we shall see.

Long Day

G saw the speech therapist this morning. He told me when we were eating lunch, that the therapist asked him to say words that began with S, he couldn't think of any. He did better coming up with name for fruits. I could tell this bothered him.

The the renal Dr. (Dr. B) happened to see us eating lunch and stopped by. Apparently G's catheter didn't work very well yesterday. They might have to go for a longer run if it keeps clotting up. But, I suspect that by tomorrow or Friday, it won't run at all.


I mentioned my concern with the lack of blood to his brain. She said he should be put on Plavix, so we discussed this with Dr. M., the primary Dr. He said pharmacy won't let him prescribe Plavix unless there is a stent. (I know Plavix is very, very, expensive). But I told him there is a stent, in the arm, which is when the stroke occurred. I could even remember the date, so with this information he was able to find it in the computer. I don't know it this will make any difference, and based on experience with my Mom, it really takes 2 months to clear out any blockages.

Dr. M. listened to the fistula G has in his left arm. He said the fistula is very strong. We told him that the surgeon says the site is unusable, but Dr. B. thinks maybe something could be done to open up the veins which are blocked.

I told Dr. M that I think the problem, that neither of the Drs. want to mention is if they use that fistula site, due to the blockages, it could send out a blood clot. Not necessarily to the brain, but to the lungs. This is what Dr. Z had mentioned to me (from the nursing home). I guess since Dr. Z is a geriatric dr., he is more accustom to delivering bad news.

Dr. M thought about this, mapped out the vein flow in his head, and said, OH, yea.

He did give G encouraging news about recovering from his stroke, although I think he just wants to remain positive.

Of course, if they can't get a fistula going, or a catheter to work....well, enough said.

The surgeon wrote Dr. M that he plans to do the surgery in the right leg, to do some sort of "loop", to get a fistula going there. Problem is, 2 weeks away for surgery, and then at least 6 weeks before you have a functioning fistula, if it works.

That's 8 weeks out.

Well, maybe G's kidneys will decide to start working.

A new NetFlix disk arrived in the mail today. Mad Men, so we will enjoy a nice evening watching it.

G generally spends his time watching TV shows and Movies on his computer. He is finding all kind of things to watch, NOVA, History Channel, and NetFlix recommends things he might like, most of which are now available as downloads.

At least this is how he passes the time, and I know it keeps his mind off of what the future might hold.

We don't talk about it. I am afraid if we did, I would start crying, and that's not good.

Anticipation

Tomorrow G goes to see his primary care. I will be with him for that appointment.

He has several others tomorrow, speech therapist, lab work.

I will meet him for lunch. Transport should pick him up around 10:00.

I realized yesterday the big problem, that no one is talking about, is the lack of blood flow to his brain. So I will harp on this.

I think they should try putting him on Plavix. I know the renal Dr. said the problem is it takes 2 weeks for it to become effective, and as he is already on blood thinners, it's difficult to switch over.

But they always have to take him off the blood thinners when he has a procedure, so perhaps they can find a way to do the switch next time he has a procedure, which should be in a week or so, if the surgeon told the truth.

I don't know what else to do. It's rather pointless, in my opinion, to be so focused on getting a site for dialysis, if his brain is dying due to lack of blood supply.

G's birthday is Wed. He will be 62. I guess it will probably be his last birthday, although of course we don't talk about it.

I bought him some art supplies today. He wants to paint a picture, with oil paint, so am clearing out the back porch where he can splatter paint.

It's the best I can offer for now.

Got Through the Weekend

G did not feel nauseous on Saturday. He now agrees with me that when he gets nauseous it's because he is having a stroke. The neurologist (whom I was never impressed with), told G the nausea was probably due to low blood sugar. But they checked his blood sugar on Thursday when he was nauseous, and it was 125, which is not low.

We didn't go anywhere this weekend. Well, I went to the store several times.

I had a prime rib to cook, which I have never done so before, so asked G to look up a recipe for me. He seemed to enjoy doing so, and it turned out pretty tasty.

Saturday was cool, but the sun came out Sunday, so G wanted to go to the backyard.

He walked down the wheelchair ramp, and all the way to the backyard, where I had placed a chair. We still had lots of plants to get in the ground, so he "supervised" the planting, although to be honest, I have more gardening experience than he.

At one point he decided he would get down and finish planting the lettuce I had dug holes for. So, he manages to get on the ground, and get back up. Of course I do not think this is a good idea, in light of the catheter in his groin, but I just don't argue with him anymore.

Then he decides he will go back in the house via the back steps. These steps have no railings. I told him I didn't think it was a good idea, but he insisted. He sat on his bottom and managed to get to the porch, asked for his walker to be placed there so he could use it to get up. It wasn't pretty, but finally with my help he managed to stand up. Afterwards he said "I don't think I will do that again". LOL.

His hearing seems to be worse. I think that's because of the swelling, but not sure.
He has started looking at some of his e-mails. He still can't really type, and has trouble seeing the keyboard to try and hunt and peck, but he manages to use to the mouse to get things to come up.

There is a care plan meeting today at the dialysis center. I have decided I am not going, although I said I would. G has asked that I don't go, because the meeting is pointless, it's only to fulfill a paperwork requirement, which is absolutely true.

I think I will call the nurses today for G's primary care Dr., to build a fire under the staff for the meeting tomorrow.

Gotta run

G Not Feeling Well

This morning G was nauseous again. At dialysis they gave him some Zofran. In the past when he has been nauseous it was because he was having a stroke, or a TIA, although he always denies he is having a TIA. So, I don't dwell on it.

I called the VA nurse this morning and got a prescription for Zofran, in case he is sick again this weekend. They let me pick it up.

He still didn't feel well this evening. Only wanted to eat rice, and toast.

We will see what tomorrow brings. The weather is nicer, so tomorrow I will try to plant some more things in the garden, and G wants to go in the backyard, which he hasn't seen since his stroke.

Also, I noticed his short term memory is going. He was watching a TV show on HULU, that I know he and I watched together before, but he didn't remember. But, his long term memory is still quite good.

He is letting him help him a bit more getting dressed and undressed.

I feel so sorry for him.

We watched an episode of "Mad Men" tonight on DVD. One part was about a woman who had cancer, but her family would not tell her. G said that none of the Drs. want to deliver the bad news. He noticed this the last week. Of course, same I have noticed. The surgeon says "maybe we will do another surgery next week", but I know that's only because he doesn't have the guts to say there is nothing else he can really do.

I guess G will keep having dialysis as long as this last catheter works, and then that's probably it.

I certainly hope I am wrong.

New Catheter, New Site

They put in a new catheter in the only site which has not been used. It's the left groin area.

This area cannot be used for a fistula, due to the vein they took out of that leg when they did by-pass. I thought they wouldn't be able to use that site for a catheter, but apparently not.

The surgeon said after a week or so they would do surgery on the right groin area to try and get a fistula going. It bothers me that that is the side he put the catheter in last week, because now there are probably blockages. And, what if these blockages don't clear up?

Oh well.

G is having dialysis now, at the hospital. As soon as he is finished they will get him discharged and wheelchair transported home, probably around 6:30. It will be good for him to be home, as he didn't get much sleep last night.

I told him no more going in the car for at least a week or maybe two. I am afraid part of the reason the catheter fail was because Tuesday evening he stretched his leg a little too much getting into the car.

I live 2 blocks from a public bus which has wheelchair lift, so we can take it downtown. Plus there is a grocery store, 5 restaurants, and a dinner theater within 5 blocks of where I live. The weather is getting nice, so I can push him in the wheelchair if we want to go out.

We also need to get G certified for the special handicapped city bus, which will do door to door service. I have the form for it, just haven't taken the time to get that arranged.

That's it for today.

Catheter failed to work

At dialysis today, they could not get the catheter to work. The nurse tried clearing it out with clot buster, but nothing.

So they called transport to pick G up. I knew nothing until the transport people phoned me, asking what I knew. I called the dialysis center, spoke with the receptionist who only knew "he's done"., so I asked to speak with the nurse who told me what happened.

She said they put in a call to the VA.

Long story short, G was transported to the VA emergency room, and after an hour os so the surgical resident gave instructions for the ER to draw blood, keep G there until the results came in. They confirmed his blood clotting was very thin, 2.8 INR, so they admitted him to the hospital. They will give him vitamin K to thicken up the blood, because if the blood is too thin it's not good to do surgery (which is what caused the stroke before).

Tomorrow he will go in for surgery to put in a new catheter. But, I fear they won't be able to do it because of blood clots. I hope I am wrong.

I spent quite a lot of time on the phone with the nurse for his primary care Dr., whom he was to see tomorrow. I said "I need someone to advocate for G", that "there does not seem to be any plan B in place in case the catheter fails" (this was even before I knew the catheter had already failed).

Yesterday G was in complete denial that things would go wrong, and he would die. I have decided he doesn't want to talk about it, so I don't. I understand his wish to deny what might happen. Sometimes it's healthy to be in denial.

I took dinner to him at the hospital A nice salad, pasta with red sauce, fresh strawberries, and a slice of lemon meringue pie. He will be NPO after midnight, so he should at least enjoy some good food now.

At least "super nurse" was taking care of him.

Tomorrow's another day.

If I don't post..

As mentioned earlier, my computer got a virus.

So, if I don't post, or your don't get an e-mail from me, that's why.

Later

Computer got virus

Last night my computer got a virus. I know it came in through my hotmail account, which I rarely look at, and only went into to delete everything.

But it somehow sent a message to my yahoo e-mail, and well as G's. So, if any of you get an e-mail from me with no subject, it's a virus.

So sorry.

Today G had 2 appointments at the VA. I phoned just after 8:00 to confirm they had transport set up, they said yes. First appointment was 2:00, transport should arrive at the house around 1:30.

When they had not arrived by 1:45, I phoned to check. The person who answered the phone assured me the driver had the info.
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Finally, no show by 2:30 I called again. This time I got Evette, who appears to be the only one there who knows anything.

She apologized, said they would call someone else to get him....but no one showed up by 2:50, and by then G said it was too late, he would just reschedule.

The coumadin clinic had already phoned him at 2:30, and they rescheduled for Thursday. His 3:00 was with the psychologist, and he said he didn't want to go. I don't think he was in a mood to talk.

Well, at least I got some work done in the front yard while we waited.

Afterwards, I set up his pills for the next week. He was so critical of everything I was doing, it was really frustrating. At one point I just stood up to walk away, and then he apologized and I sat back down. I know he hates to be dependent on me, but damn it, it's no cake walk for me either.

He is taking a nap now. This evening we are going out to the movies. "True Grit" and the cheap theatre, and it's $1.00 day.

Care Plan Meeting, with no plan

This afternoon I received a call from the social worker at the dialysis center, asking if I could attend a "care plan meeting" nest week. The Dr. would not be there, but on the phone.

I said I probably could.

G was not yet home from dialysis. Long story short he had told them he would not attend, so they called me. He said they only want to do it because they get paid for it, that is not a requirement of the VA, and the last care plan meeting was not productive.

I had already told the social worker that the Dr. should be prepared to discuss the actual plan of care in the meeting.. like what is "plan B" if the catheter fails? She said she would pass it on to the Dr.

I don't remember all that happened, but the nurse called me to say they had taken cultures from the catheter site, to see if it was infected (it's bleeding a little, apparently G pointed this out to the nurse), and that G should see the Dr. at the Va. I asked "which Dr.,", and she said his renal Dr., to which I replied "but what about the Dr. at the dialysis center, who is a renal Dr.?". Then she said "well, the Dr. who put in the catheter?", Oh, I replied, the surgeon? Well, could the Dr. put in a request for consult, because it's difficult to get an appt.

The nurse phoned back later, saying it was after 4:00 and they couldn't get in touch with anyone at the Va. I said G would be at the VA tomorrow for other appts., wo he will try to see a Dr. She told me to check if he has a fever tonight, and if so, to take him to the emergency room.

G and I both agree there is probably not an infection, just some oozing because of all of the blockages, if there is a hole stuff wants to come out.

Anyway, about 8:00 tonight I got a call from my sister, saying there was a phone call on my nephews cell phone (which was my cell number over a year ago) from a Dr., asking me to call before 5:00.

I have checked and rechecked the number for me on file at the dialysis center no less than 3 times. But, they are not computerized, and have big book they put it in. Apparently the Dr. is looking at some old document.

And so it goes.

Well, at leazt I am making them do some work. I told the nurse and the social worker that to tell the patient he is suppose to coordinate his care is a bit absurb.

We shall see what happens tomrrow.


G went to bed early. We went to the AT & T store to cancel the internet we had signed up for but never got...long story. He was pretty tired after all of that.

I really worry about him. I think he is having some heart problems, but of course, being a man, he keeps telling me he is OK.

I just don't argue anymore. It is what it is.

Nice Weekend

G has been walking around the house without his walker. As long as there are door frames or furniture he can hold onto. In one way this is good, because it makes him stand up straight.

But sometimes it just scares the heck out of me. He hasn't fallen, and he is very careful, so I just have to quit worrying so much.

Saturday afternoon I wanted to go shopping for some hardware for a dresser, and asked G if he wanted to go along.

We ended up at Lowe's and although G walked in with his walker, he saw they had the electric carts, so sat in one of those and we put the walker in the basket.

It was great that he could drive all over the store, just following me around.

I didn't find the hardware I wanted, but we ended up buying some lumber. He wants to have some shelves built in the bathroom. I agree we need them, but have put it off until the bathroom gets remodelled. Well, I decided not to fight him on it. It's just not worth it, and it gives him some control over something.

I got the lumber in the car, no problem. When we got home he said "I will unload the lumber and put it next to the steps and you can carry it up the steps". I didn't say anything, but just went about my business carrying other things into the house. When I came back out he was standing by the car in the grass. Not sure what he had tried to do, but he admitted he couldn't carry the lumber.

However, he did walk up the wheelchair ramp with his walker. He was afraid to walk down the ramp, because part of the ramp the angle is too steep.

Oh, and Sat. evening we went out for sushi. I dropped him at the curb, he managed to get into the restaurant and was sitting at a table when I finally arrived. After dinner, he told me to get the car, that he would get the check and meet me out front. And he did, although one of the restaurant employees was standing next to him.

He is also now able to deliver dirty dishes to the kitchen sink, and sometimes he can manage to get himself something to eat. If I get the refrigerator better organized, he could do this more often.

So all in all things are going much better. And I am able to get a lot more done around the house, since I don't have to spend so much time at the VA.

Things are going well

Yesterday G went to the VA for his coumadin appt. While there he managed to get his new shoes, and get an appointment set with the speech therapist.

He has been busy at home making a schedule for his pills (asking me to write it down in a notebook), and then I set them up in the weekly boxes.

It was a little confusing because some of the pills are different strengths (depending on what they had in stock, I guess), so it was a little confusing. But G knew, and I think we have it figured out.

He goes back on Tuesday for the coumadin clinic. I called transport this morning, and they said they will check his schedule every Monday to see what appointments he has at the VA, and set up transport accordingly. The transport for dialysis is set up for his normal schedule, at the appears to be working OK.

So, it's nice for he and I both that he has at least that much independence from me.

Not sure if I mentioned the new catheter is in his groin area. The first day he just had them cut a hole in his pants, and then I took that pair and another like it to the alteration shop to get a flap sewn over the hole with velcro closure.

I dropped them off Wed. afternoon, they told me would not be ready until Friday afternoon, but then phoned yesterday around 4:30 to say they were ready. So nice.

The weather turned really cold, frost warning for tonight, so I covered up the tomatoe plants I had planted, and put all the other things we bought, not yet planted, in the basement.

Gotta run. G just came home.

First day with G home

G went to bed about 9:00 last night, got up about 1:30 for a while, and then slept until 9:00 this morning.

Of course this is the first good nights sleep he has had in 2 months. It's amazing the staff in hospitals and nursing homes don't understand how important sleep is to the patients.

Transport worked out well, except I had to call this morning to confirm, and the person I spoke with said "we were just talking about G, wondering if he is still eligible for transport.

Told them I had spoken with Yvettte yesterday, who confirmed he was (good thing I thought to ask for her name). This seemed to satisfy them...scary they don't know how to figure it out on their own.

So transport is going well, I got appointment made tomorrow at the coumadin clinic to get his blood clotting tested, and transport arranged for that appoinetment.

Also called to get speech therapy referal, and appointment with primary care.

Things are going better, and it sure is nice not having to run over to the VA several times a day.

G is home

Finally, G got home about 5:15 today.

I had stopped by the nurses station this afternoon when G was at dialysis, to ask if they could get all of his meds picked up for him so he could go as soon as he got back from dialysis, which I said would be somewhere between 3:45 and 4:30.

He was actually back a little later, because his transport was late.

I got over to the nursing unit about 4:00, and started loading up everything. G had cleaned out his dresser today or last night, so there wasn't too much to be done. I had taken some things home the previous evening.

Guy from orthopedics came by to measure G for shoes. Then he went to the nurses station to wait for the nurse to check him out.

There wasn't too much confusion, they had to print out his schedule of appointments.

Wheelchair ramp will take a little getting use to. There is a threshold plate to get into the house, but on the other side of the threshold there is quite a drop, so we might need to do something there.

My brother was over installing the grab bars in the bathroom for me. Good thing I have some help, as the VA gave us the grab bars, but no mentioned of how one would get them installed.

What do people do who do not have resources of help?

I fixed steaks, and we ate dinner outside on the front porch. Weather is lovely.

G was very tired. I think he is just getting worse, but maybe in the next few days he will be feeling better.

I have a feeling all the blockages are taking a toll on his heart, as I notice him breathing heavily quite often.

He really isn't making anymore progress. But, at least he can still walk short distances, and there is a lot to be said for that.

Tomorrow's another day.

He will have dialysis tomorrow (he missed Monday due to the surgery). The VA transport should come for him around 10:15. I'll try to call around 9:00 to make sure they have the correct address, etc.

It's good to have G home, but it is so sad knowing he won't ever get back to the way he was.

I think even he now realizes this.

Dinner is Late

G got back from surgery around 2:30. After he came back, the nurses were asking him "what time did you leave this morning". There was much debate amongst the staff, then they thought to look at the "transport ticket" to obtain the time. It said 7:30. But I know that was not really the time he left.

He called me when he was suppose to leave, I was already headed out the door so I drove to the VA (about 5 minutes away), went to surgery, and he wasn't there.

It turns out the nursing unit did not give G his high blood pressure meds, which he must have in the morning (there were problems in the past with his blood pressure too high during surgery).

G told the staff he needed this pill (he was NPO because of the surgery), they didn't believe him, so called surgery to confirm, and yes, he did need that pill.

So I don't really know what time he left, but I beat him to the surgery unit, went back looking for him, and must have missed him in the elevator.

Anyway, the staff apparently did not report him back in when he returned from surgery, so there was no supper tray for him. When I got over there around 6:30 (dinner is at 5:15), G was sitting in front of the nurses station and they were trying to find his dinner. He said he would go pick it up, but of course, that could not be allowed.

So finally at 6:45 when he still did not have dinner, and I had carried some things to the car, I asked what he wanted me to get for him.

When the nurse heard this she said "so you don't want your dinner", to which I replied, "well, it's not here!".

So I went to McDonalds as requested by G, and when I returned he was eating dinner, but was still happy to have the food I brought as they only gave him about 1/2 of his usual dinner (due to his dietary restrictions, he gets lots of substitutes from the norm).

We will be so glad to get him out of there.

Tomorrow's the big day! If the "to do" list isn't done by the time he goes out for dialysis (around 11:00) I guess I will be playing patient advocate again.

Catheter replaced

Finally after 4 hours in the surgery room, they decided to put a catheter in the groin area.

It certainly is not optimal, but we will have to do our best to keep it from getting infected, etc.

G is still slated to come home tomorrow. I gave him the list of things which need to get done by the staff before he comes home. The social worker came by and said wheelchair transport was arranged, but then she had to finish the process with billing information etc., so actually it's not completely arranged.

One of the things on "the list" was to make sure we get the phone number of the transport company, in case they don't show up.

Wheelchair ramp installed as of 2:00 PM It takes up half the front yard, much bigger than I thought. But, I am planning to put up a new fence, so maybe the new fence will be taller than the old one. I don't know city codes, so will have to check.

Now I must get to working in the garden. There is no way G needs to be around dirt now, so I have to get all this stuff done so he doesn't fret so much. I know how difficult it is when you want something done, but can't do it yourself.

Oh, and the fistula might actually work. G told me if the fistula doesn't work, then he is a goner, which might be true.

So every day is precious.

Later

Catheter came out

Sat. about 5:30 "G" phones and says "my catheter came out, you better get over here".

He has a catheter which is used for dialysis as he has never had a functioning fistula.

It has never come out before, or, as far as I know, even been loose. He has no idea what happened, other than he said he reached across the bed to pull the cord for the light, and blood started coming out. He didn't even really feel anything.

He told me he walked to the hallway, a nurse was going by, "G" said "I'm bleeding", and the nurse said " Oh Hi Mr. G", and G said ....no, I AM BLEEDING (he is a little hard to understand because of the stroke). The nurse grabbed the blanket, told G to apply pressure, and then I guess they ran and called a nurse from the ER to come over.

Not really sure what happened, but either they transferred him immediately to ER, or the ER nurse came over and took him.

G did tell me that the ER nurse was upset that the nurse at the nursing unit didn't know what to do. Apparently another staff member said to her "well, they have a different culture there". To which the nurse retorted... "but good grief, that's the first thing you learn in nursing school. If there is a bleed, have the patient lie down and apply pressure".

Later I told G that I guess they do have a different culture..one of ineptness.

After I got to the ER I called one of my dear friends who lives close by. Sometimes when I am really stressed I get panic attacks when I drive, so wanted to know if I had a back-up plan should I not want to drive. She was kind enough to come over and spend some time with me, and certainly helped take my mind off of worrying so much.

Anyway, G goes to general surgary Monday morning to get the catheter replaced. I am really worried, because he still has all those blockages. If they hit a blockage lose, blood clots can go everywhere, lung, brain, stomach, heart. I know he doesn't think about it. Probably because there is nothing that really can me done, and, he just doesn't want to think about it.

Well, I will go over Monday morning when they take him in for surgery. It's always best that the surgeons know there is a family member there who will be really upset if they screw up.

Taking some time for myself.

I think I started getting a stress headache yesterday. I didn't feel great today, so told "G" that I am sick, and not coming to see him today.

I know he is disappointed, but there are some guys there he has started talking to, so I think it's a good time for him to socialize with them.

He reminded me this morning that the seeds need to get planted. So, I am working on that right now.

Going to plant corn, and maybe Zucchini and yellow squash, if I can figure out where.
We want to plant more things than we have room for.

I only have 3 days until he will be home, so I also have to get some things organized in the house.

What a difference a pill makes

"G" went to the pyschiatrist yesterday. They increased his Zoloft, says they find that often this helps people recover from stroke.

He was so much nicer today. Even the manager at the dialysis place said "G" seems in a good mood.

We went out this afternoon late to Lowe's to buy plants. "G" heard they had a sale on tomatoe plants, 4 for 99 cents. He was correct, although there was no sign, so guess it was a "secret" sale. We bought about 10 different 4 packs, tomatos, lettuce, I don't remember what all else. Now I have to find a place to plant them, that won't be disbured when I get the garage torn down and a new one up.

We have a few more things to get in place before he comes home. I am insisting on wheelchair tranzport to/from dialysis, as often he is weak afterwards. I spoke with th Dr., who would inform the social worker this was necessary (she didn't know why I couldn't take him in the car, because I did one day when they called the cops and the transport people left him).

But, the good news is I overheard people at the nursing home talking about all the training programs they are now taking (on the computer), how many times they have failed...etc. And there does seem to be bit of an attitude improvement.

Of course, this could be just because they know they will be rid of us troublemakers very soon!

Porch is done. Wheelchair ramp to be installed Monday.

I have to get grab bars installed in the bathroom. They gave us grab bars, but I guess we have to install them ourselves LOL. I have already asked my brother to come do that for me.

Good thing I have learned that I can't do everything myself, no matter what "G" says.

This evening "G" and I came to the house to drop off the plants. He was complaining that the gound between the sidewalk and the street needs to be leveled off, as it is causing drainage problems (which is true). I told him I couldn't do it. Then he said he could do it.

I didn't say anything to that comment, but suggested that when the garage gets rebuilt, and they have in the heavy equipment, that we have them dig all the area he wants dug up with power equipment.

He didn't say much, but guess he will let me have that done.

UGGGH.

It's a new world.

Another TIA

This morning before breakfast "G" had dry heaves, cold sweat, slurred speech.

This also happened a few days ago. I tried to convince him then that he probably had another small stroke, but he wouldn't hear of it.

But today, although he did not use the word "stroke", he called it an "episode" (which is accurate), and told me afterwards he had trouble walking, did not do well in p/t, had to have help walking back down the steps.

Then he said to me "you were right about needing the wheelchair ramp".

I have been telling him he can't come home until I have a wheelchair ramp. I know from experience, because the first night I had my Mom home from the nursing home she collapsed on the floor, and was in a wheelchair after that.

At least our whining in the care plan meeting regarding the need to be shown how to get up if "G" falls accomplished something. Today in p/t they worked on getting up from the floor to bed and floor to wheelchair.

So our "to do" list before "G" comes home is get appointments at the coumidin clinic (which will probably be 2 times a week), get a follow-up with primary care to get all the new prescriptions. He will be released with 30 days supply by the Dr. at the nursing unit, but then the primary care is responsible for writing the permanent prescriptions.

And, transport arranged for dialysis, and appointments. "G" getting transport will be one less thing he is dependent on me for. He needs to maintain some control over his life. I certainly understand that, and quite frankly, I want him to.

I just hope he can adjust to the idea that he/we will have to hire people to do things.
I can't do everything, and neither can he.

It's difficult to accept one's limitations. I remember my Mom telling my Father, when he was almost 80 and complaining about what he couldn't do "well honey, you're not 50 anymore!" LOL

Discharge Plans

To continue what was discussed during the care plan, I asked what I should do if "G" falls.
There wasn't much offered, but to call the fire department.

As mentioned, "G" had asked the p/t to practice heling him get up, but she said this was only for outpatients. Whomever was representing p/t said "Well, you have 2 more days, so they can show you then".

It's all just insane.

I also asked about getting transport for his dialyis, appts., etc. I know from past experience if I try to do it all, it's jsut exhausting. At leasst the social worker said she would try to coordinate with the social worker at dialysis for transport.....but then she did say "but didn't you take him one day".

I also asked about any help they could offer, day care, home health care, nothing was offered. So then I said " so you are telling me I can leave him by himself?"
"What if fallls". To which, "G" replied, "it's as if I were here, no one would respond".
Which sadly, is true.

I know what I need, I just wanted to see what they would offer.

Of course, they want us out of there as soon as possible, because we are trouble.

Well, it's good to know we are going.

Tonight "G" came to the house, we put some potting soil on the top of the other stuff I had put on the raised bed, went to the store to get some seeds, so tomorrow we will be planting some herbs.

Problem is, the Dr. says "G" should not be digging in dirt, dut to high risk of infection. I asked him to tell this to "G" because he won't listen to me.

Care Plan Meeting

OMG!!

The meeting starts out with introductions. The physical therapist is not there, she called in sick (most likely to avoid us). The speech therapist was not there, but she is good, and we already knew she probably wouldn't make it (not that the people running the meeting knew this).

The pharmacist starts out the meeting revewing the list of meds. It doesn't sound correct, and finally when she gets to the 3rd med, the Dr. sees the look on my face, checks the sheet the pharacist is reading from, and they realize the list is not for "G", but for the next meeting.

Talk about breaching confidentiality.

So then they say that P/T says "G" has plateued, not making more progress, so he will be discharged from P/T on Friday. That's in 2 days.

We were never given any kind of care plan, goals, etc. from P/T. "G" finally asked yesterday if he could be shown how to get up if he falls, and was told "that is something we do for outpatients!". And yet, p/t plans to discharge him in 2 days, and then he WILL be an outpatient.

There was lots of other discussion, almost too depressing to mention.

"G" was still combative, told them a couple of times "that's bullshit". Well, at least they didn't call the cops.

The Dr. has ordered another CT scan which they will probably do late today after dialysis. I hate him having so many CT scans, but he will FINALLY be seen by a Neurologist this week (The "Good" Dr. said he needs to be followed by a Neurologist, and I guess someone finally got the consult put in, probably the Psychiatrist, but I really don't know).

I told them let's shoot for discharge next Tuesday, as I am not sure the wheelchair ramp will be up. The city inspector still has not shown up to sign off the trusses on the porch.

Oh, and here's another laugh. Yesterday there was "Gardening" as an activity so "G" and I went.

They had one of the staff from landscaping, planting onion sets in raised beds. There was no attempt to let any of the patients do any of the gardening.

To me, this would be like offering "art therapy", and then having the patients watch an artist paint.

Well, gotta get to work.

Always a battle

I went on-line this morning and ordered a transport chair. 75.00 all inclusive.

The medical supply place we went to yesterday wanted 279.00 for the transport chair. This is probably how much they get when you have a prescription from a Dr., and Medicare pays for it. And we wonder why Medicare costs so much LOL.

Last evening before we went out the nurses were reviewing the meds he should take at 5:00 PM. On their list they had a med, which I knew he got at dialysis. I told them this, they phoned the dialysis center and confirmed he received it there. I have no idea how it got on his med list, and of course, what would have happened if I had not been there to intervene?

They had instructions to hold the blood thinner, as his blood was too thin.

This evening "G" and I went out to see a movie, "Black Swan". He started dozing off, I did not like the movie, so we left after an hour.

As he was walking to the car, I saw blood dripping, and realized he had a nose bleed. Which, is a sure sign his blood is too thin.

We got back to the facility...nurses busy because computers not working.

This evening "G" told me he doesn't want me to say anything to anyone about what he needs. This is a continuation of the problem with him being combative... we had some other problems..
Anyway, he will see his Psychiatrist on Thursday, and hopefully he will do something with the meds to improve the mood problem.

I guess the Speech Therapist (who is great) called the Dr. this morning about the mood problems, and a Psychiatrist showed up to talk with "G", but it's not his usual Dr., so I suspect he wouldn't talk with him. Never did get to the bottom of what happened.

As to my house, the inspector did not show up today, so we might be a day behind schedule. But the contractor is great, and he is also doing the wheelchair ramp, so think it will be done by the middle of next week if not sooner.

I can't bring "G" home soon anyway. I don't have all of his meds here, and it really is best if he can be close to where he gets his P/T and speech. They have released him from O/T.

As I said before the "care plan" meeting is tomorrow, but my gut tells me it will be postponed. "G" said 2 people showed up this morning to take him to the care plan meeting, and he had to tell them it was tomorrow.

He is taking his calendar everywhere with him, so at least that is good.

Gives him some control, and as he has lost so much control over his life, every little bit helps.

A Little Better

This morning "G" was depressed, but he didn't want to tell anyone (except me). The nursing home Dr. say him this morning, and "G" told him he was fine.

I spent most the morning getting an appt. for poldiatry, and getting the nurse to type into the activity sheet all of "G" appts (although the "bad" nurse said he did this 2 days ago.

"G" did not get PT today, because he was asleep, and no one came to take him.

But after dialysis, he was feeling better (they finally increased his dialysis up to 4 hours as he was not getting sufficient dialysis, due to the blockages). Of course, this only happened after I reminded them 2 times the Dr. said it should be increased.

"G" and I went out this evening, looked at transport chairs, which he doesn't like because he can't set the brake (it's in the back). He says he can always get around with his walker, but I fear he overdoes it. We then went to my house, so he could look at the progress of the porch, the raised bed where I started putting in leaves, dirt, mulch, and will fill it up at the top with potting soil.

Then we went to dinner at a Sushi restaurant we had not been to before. It was very good, and "G" used chop sticks. I asked if he wanted a fork, but he said no, the chopsticks are good practice.

He still keeps telling me all the things I need to be doing, which is a problem.

There is a "care plan" meeting on Wed., so we shall see what they say.

I still think he needs an adjustment on his meds, but he will see the Psychiatrist on Thursday, so guess it can wait until then.

He still has unrealistic expectations of himself, and me, so that's a problem.

But I can understand. He is very frustarted, and rightfully so.

Problem is, so am I.

He keeps telling me I need to just relax.

LOL

Days Like This, I don't Need

I am almost too tired to write, but will try.

Long story short, I found out that "G" has not been taking a med which is prescirbed for neuropathy pain. He says he is not having any pain, but this is something new, and I think it happened after last week, when I think he had another stroke. So, maybe some nerve cells got killed. Who knows.

Anyway, the med is prescribed for neuropathy, but is also a seisure med. At one point they found out that sometimes taking too much Zoloft induces mania, so to counter this they prescribed a med which was actually for seizures. I think this new med replaced it, but when they gave it to him 2 times a day when we were in Phoenix, it induced hallucinations. He found that if he took it about every 3 days, it worked on his neuropathy. So, he got them to prescribe it on a PRN (as requested). And, he has not requested it for the last week.

On Friday, they called the police because he asked why the transport people (to take him to dialysis) had to take him 1/2 earlier than when the VA people took him. He phoned me about 10:15 (he should be at dialysis by 10:45), so I drove to the
VA, picked him up, took him to dialysis.

The "stupid" nurse did not have the Vancomiacin ready to go with him, so I went back later to pick it up (that's another story)

Anyway, tonight I asked the nurse to put in a note for the Dr. at the nursing unit, as also his Psychitrist (whom he is to see next week), with a note that I am concerned he is manic.

The reason I think he is manic is because he got very upset with me today, claimed In didn't want to talk to him (I could not understand him on the phone), was upset that I had hired the neighbor to build the raised garden bed he kept insisting "he" could built, or that "I" could build. (yea, like if I had a full day and some help). He also thinks he can dig up the grass in the corner and move the dirt to the raised bed. Well, he did conceed that I might have to push the wheel barrow.

I could not convince him to ask for the med which is PRN, so I fear tomorrow morning won't go well. I aksed the nurse to pass along that it would be best to call the Psychiatrist before someone calls the police, but I am sure that fell on deaf ears.

"G" said the nurse would ask the transport company to come later tomorrow, but this is the same nurse who said he would do things he never did, so I don't hold out much hope for it.

Well, tomorrow's another day. Hopefully the Dr. will get his meds adjusted.

If not, the cops will be there again, and I guess I will be taking "G" to dialysis.

"G" expects so much of me. He wants me to do everything he can't do, and sometimes it's just a bit overwhelming.

However, we kissed and made up. We had a good talk. I cried. Not so much for me, but I have found that men are suckers for a crying woman. Too bad I didn't learn this before. I don't cry much, but maybe I will start! LOL