husband Update

[susiestar]

Lisa, this man is your mate. The one who has been there through it all for you. The one you gave up all other men for. The father of your children.

Let someone else care for your pets for a few days - does not MATTER who.

Please go and stay with Step.

I am worried. I just have this feeling that if you are not there with him more that they are going to miss things that are really important. Your husband is autistic. He CANNOT tell them what he is feeling in a way they will grasp. He NEEDS you with him as much as is humanly possible. Just like Travis needs his cane and needs to not mow the yard.

You also need to find the hospital's patient advocate or patient rep or ombudsman. Usually NOT called an ombudsman. THis is the person who is familiar iwth how the hospital works who can go and say "This family needs the docs to tell them more. You, doctor, haven't answered the questions they asked and they are upset. They need you to speak with the wife who can't be here because the patient is autistic and is incapable of expressing himself the way he is supposed to."

This person can likely be found through the head nursing office or the head admin office or the operator. I know all the hospitals here have them and when we lived in cincy the hospitals there had them and when I had friends/relatives/employees having surgery the hospitals around Dayton had them. So . . . . this is a person who can really be on your and husband's side and push the docs to spend the time to explain to you so you can explain to husband.

Now, how long a drive is it in miles to Steps and to the hospital from your home? Also, can you pm me the name of the hospital that husband is in?

You are all in my prayers all day. PLEASE, don't let pride keep you from spending this time iwth husband. Not only does he NEED you, you need him right now. What, exactly, will your pride over not taking help during this mean to you if the worst happens? In a year, in five years, what would you feel about that decision to not accept a room at Step's?

 

[AnnieO]

Lisa - oh please, come up. My husband is going out of town, LOL, so I'll cook and everything. All you will have to do is be near your husband.

 

[JJJ]

It isn't just not adding salt. It is basically no prepared food: spaghetti sauce, cheese, bread, and most condiments are shockingly high in sodium. Even a 'low sodium' diet at most hospitals have too much sodium for a post-heart attack patient.

 

[Hound dog]

Actually I was holding off staying with anyone (Nichole offered as well, even to come down and pick me up) because it sounds as if he's coming home tomorrow. Now according to his nurse, well she's sure of it but it's a prediction, he's yet to see the doctor......although he's due soon. The last nurses I've spoken to were fine, just that first one and heck she might have been busy. So I'm keeping tabs on him that way. And after yesterday mornings hissy fit the doctor is taking the time to actually stop and talk to him while his nurse is there to fill him in on what he might have missed. husband is in much better spirits now that they've stopped talking over him or around him and treating him like he's 12.

He had another ECG today, the arrhythmia has them worried. So they've switched him to a new medication and are starting it IV so they'll know faster if it's going to work or not. If it doesn't work they'll sedate him tomorrow and shock his heart and see if they can correct it. Now the low down on that I'll get explained to me from the nurse or easy child as I'm sure he's using very basic layman's terms. If that has to be done then it will be friday before he comes home. If he isn't discharged tomorrow I'll see if easy child can run me up for a visit just in case he stays longer due to the arrhythmia. That would be mostly for his benefit as I'm doing ok now that I'm getting facts from his nurses and he's sounding so much better. I'm on the phone with him most of the day, whether I want to be or not. lol

I think the telling them he is autistic and deaf helped a ton. They brought in someone yesterday who will help with the discharge and make sure he will come home with all his medications and any equipment he needs. That took away a big fear for him I think as he's sounded better since she came in and spoke with him.

I should know by this evening if the new medication is working or not, either via husband or his nurse. Then I should know whether or not to go up and be with him for the procedure they'll need to do. Which I'll talk to easy child about today. Knowing wth is going on is so much easier and better than not knowing is going on. I don't think there would be an issue taking me up for the procedure.

 

[Hound dog]

easy child said we'll go up if he has to have the cardio version, which is his "shocking the heart" thing. That way we'll be with him for that and he'll get a visit as well. She's lining up arrangements for the kids and if she can't get her mother in law to watch them Nichole volunteered and she'll just go see her dad later in the day. So that is settled.

 

[susiestar]

I am glad you are getting more info. I really worry about ANYONE with impaired communication who is in a hospital with-o a family member on hand to help make sure the right things get done/communicated. Esp as shorthanded as hospitals are now with budget cuts, nursing shortages, etc....

Many hugs to you and him.

 

[Hound dog]

Well, easy child decided we'll go ahead up very early in the morning heading out around 7:30 am leaving sister in law to watch the boys, regardless if he's having the procedure or not, that way if he's being discharged instead, we'll already be there to take him home........if not being discharged, he'll get a nice long visit and we can catch up with at least one of the docs and the nurse in person. If he's being discharged and it takes too long.......well, I'll ask Nichole if she can run husband and I home and easy child can make sure she can get back in time for Darrin if her mother in law won't pick him up.

Going to call husband now and let him know. It will give him something to look forward to and relieve any anxiety he may be having about possibly having the procedure done. Which I don't blame him a bit if he does I can't say I'd be the least bit thrilled with the idea of them shocking my heart hoping to get the rhythm back to normal.

 

[AnnieO]

Have easy child or Nichole keep me informed, OK? And if they're not, I can always make you dinner.

 

[Hound dog]

Ok Step will do.

 

[mstang67chic]

She can cook too! I've been fed by her and it was gooooood! LOL

Just wanted to say that I've been thinking about you even if I haven't been on much. husband had a 15 page paper due today so he's pretty much been living in front of the computer.

 

[Marguerite]

Lisa, I have more recipes if you want.

As for him staying longer - we had this problem when mother in law was in hospital (the last three or four times). She was being really difficult, misbehaving, sulking and downright lying to us about what she was being told. Actually, I think she was telling us what she herself wanted to hear. "I'm coming home tomorrow."

We learned to check with the nursing staff independently and also tell them stuff they needed to know (such as what she was telling us). We also got the hospital Occupational Therapist (OT) involved and the Occupational Therapist (OT) had told us, she would not be permitted to come home until certain modifications were in place. mother in law was NOT happy about that and refused to acknowledge she had been told this. We did have trouble getting hold of the Occupational Therapist (OT), and as for the doctor - almost impossible! We had to rely on nursing staff and it was like a game of chinese whispers at times. And yes, sometimes the nurses would say, "She's going home tomorrow," but when we double-checked, they had got the information from mother in law and not the doctor! mother in law was so convincing, she made the nurses believe this was what the doctors had told her and they failed to check the charts before quoting her.

We went through this for a fortnight - she was saying every day, "I'm going home tomorrow," and refusing to accept it would not happen. She had to learn to use a walking frame, she had to have a range of tests, she had to be stable and the modifications had to be at least organised. Then the Occupational Therapist (OT) arranged for a home visit - mother in law would come too, but have to go back to the hospital afterwards. mother in law did not want to hear that bit, so she kept saying, "I'm coming home today."
I met them at the house and observed mother in law's behaviour. A real worry. easy child happened to be with us at the time and also observed. The Occupational Therapist (OT) was very firm, said that if mother in law did not consent to these changes, she would have to go to a nursing home. mother in law poked her tongue out at her! Not in jest, either.

So we walked through the house, mother in law showed how she gets in and out of the shower, how she managed the toilet, how she gets herself to the outside laundry, and the Occupational Therapist (OT) clucked her tongue in concern and made a list of changes.

It was another day after this when mother in law was allowed home. The modifications were organised. But as soon as she could, mother in law cancelled as many of them as she could. And now - we're having to put more in. And she keeps cancelling some of them. Slowly we're getting there though. It's two years later and the shower has not been fully modified. She's had another fall and is much more frail.

mother in law is a very intelligent woman, but increasingly does not handle change well. She is terrified of getting old and frail (welcome to reality!) and uses denial as a coping skill. husband & I now spend every evening with her, most of the time I cook dinner. I enjoy cooking so it's no hardship for me. mother in law as a heart patient, has to eat a healthy diet. But as a frail old lady who is losing weight (she actually has been told her blood tests show malnutrition) we need to push the calories in. But old habits die hard - she insists on following a healthy heart diet and avoiding eating too much in case she gets fat. She told me a couple of days ago that she is having to watch her weight, she is getting fat. When I challenged her on this (her wrists are barely thicker than my thumbs) she admitted she hadn't weighed herself lately. AARGH!

So whatever you hear about what is happening - do not take what he says at face value. Instead, make up your own list of questions and give the list to the nurses to ask the doctor for you. he may not have time to call you back, but whatever he writes down for the nurses, hopefully they will pass on to you.

We learned to really rely on the nursing staff for information, for feedback to/from the doctors, for access to ancillary staff who were actually the better practical supports we needed.

I do think you need a hospital Occupational Therapist (OT) or other care worker to liaise with you about his changed needs for when he comes home. Your being a nurse is a help, but they need to come to your place and assess how much needs to be changed to meet his needs. This takes time and he cannot come home tomorrow until this has been done. Ideally. But you might need to call and hurry things along. In the meantime, his arrhythmia needs to be fixed and seen to stay fixed. A cardioversion is the way to go, but they need to know the rhythm will stay stable. With the damage to his ventricles, the neural pathway has now been changed and this can mean that heart contraction (which normally washes across the heart in a depolarisation wave, followed by repolarisation after a small refractory period) takes so long to finally work its way around, that an interference can set up and the heart kick back out of normal rhythm. There are possibly more conservative ways for this to be managed (without a pacemaker, if surgery is contraindicated) but they will need to observe him for at least a few hours, preferably longer, after the cardioversion, to make sure his heart stays in good rhythm.

mother in law's heart every so often goes into AF and then we call the ambulance. Last time it went into AF, it was coming up for Christmas and she did not tell us until 27th December. We'd had the kids staying, and she did not want to miss out on time with her grandkids. So she put up with AF quietly for about four days and still insisted on coming shopping with us. We let her come shopping, but only on condition she would let the hospital see her after the shopping trip (when the last of her grandkids would also be leaving us from the mall to head home). The effort of shopping told on her and she became a lot more willing to go to hospital.

mother in law's bad behaviour is mainly reserved for hospital. She is actually a lovely lady, but very stubborn at times. Very anxious too and increasingly, I see Aspie signs. We always thought the Asperger's came from husband's dad (as well as some from my side of the family), but sometimes I wonder.

Lisa, hang in there. Get your information from other sources, take notes, leave notes for the doctors and ask the nurses to fill in the blanks for you. Cultivate them - you must remember what works! And if your husband gets upset with you talking to the nursing staff, remind him that you know he has a hearing problem and you are simply making sure you get all the little bits of info he may have missed.

Also sort out PoA stuff. You are going to need it, it will simplify matters. Several years ago husband sorted this out with his mother.

Marg

 

[HaoZi]

I know someone that had to have hers shocked back into rhythm. She said it took three tries, but it's been fine since then (she had it done years ago).

 

[Marguerite]

Hope all is going well, Lisa.

Marg