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Some Good News to Report

Posted by kartwk @kartwk, Jul 16 10:10am

No, I have not been able to get the diagnosis, BUT have gotten Husband to agree to have the long needed and painful hip surgery. Hopefully the constant grunting, moaning, etc. will slow down after he has it because IMHO that is truly cruel and unusual punishment to go thru day after day, night after night.

Last month he went to Doc for his asthma and lungs. Everything known to man does not seem to work for him but this time the Doc had something new; but H. didn't understand what he was saying and I had to step in and clarify it for H. This is the first time the Doc. looked at me questioningly, so maybe, just maybe he is getting the situation.

I inquired about H's ability to have surgery as he always claims it is his lungs, age and a whole host of reasons not to have but the real reason is that I had knee surgery that failed and had to be repeated and that scared him. I know how he thinks. PCP saw no problem.

We have seen the surgeon, who is associated with Cleveland Clinic and fellowship trained as well. I am finding that seems to really make a difference as the fellowships only accept best people. Back, hip, knees where to start....the Surgeon and I both explained to him that the hip would give him some back relief. H is in severe pain, does not want to walk, hurts when he sits, something has to be done. I have mobility problems of my own.

Well, surgeon says he is a good candidate, the heart Doc. has given the okay so today we schedule.
We have a wonderful neighbor who's father fractured his hip and went through all this. He suggested that H. go into the local nursing home after the surgery because they have one of the BEST therapists in the area.
So, today we are making the surgery apt. We have decided to do outpatient surgery rather than at the amblical (sp) center because of his heart problems and to go to the nursing home after.

Wish me luck in getting the apt done without him backing out.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

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kartwk | @kartwk | 1 day ago
In reply to @ocdogmom "@kartwk I am glad that your husband's surgery went well. Sorry that you are not getting..." + (show)
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@kartwk
I am glad that your husband's surgery went well. Sorry that you are not getting the break you so deserve. His refusal for rehab may reflect his fear of the unknown-strange people, strange bed, strange food and of not having you around as you likely represent safety and security to him.
My suggestion is to contact his surgeon and request IN HOME post-op physical therapy at least twice a week. Hopefully there are PT agencies that do in home in your area. Pull out the dementia card if needed saying that your husband needs in home PT because of his fear of new, strange places.
Having it in home will allow you to leave for that time and just get away from it all. Medicare and my supplemental insurance covered this for me. If approved, I would tell your husband that the surgeon has ordered this PT as part of what HE feels is necessary for a complete recovery and to minimize the length of time he will experience post surgical pain that he now has. That way he can be annoyed at the surgeon, not you, though he may still complain and say it is not necessary. I would just ignore that and schedule a session as he may go along with it once the therapist is at your house. My husband often says no to things that he will later do if put in front of him.
Be sure to give him his prescribed pain medication at least half an our before the PT session. The new hip should not cause any pain, but the surgery will have stretched the muscles over the hip joint, not to mention the surgical incision and that is what will hurt. Best of luck with that. Remember "you can lead a horse to water, but you can't make him drink" and as my husband used to say pre dementia "Is this a hill you want to die on" Probably not. Just try your best and don't have an expectation for a specific outcome. That's all we can do.
We only have control over ourselves not others.

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@ocdogmom

Thanks all. H is miserable today but laying low after what I found out he did. Not having a dementia diagnosis means that he can make his own decisions. That is what he did even though we agreed b4 the surgery that he would go into this particular rehab because they have one of the best therapists in the area. It was all set, we even went to the rehab ahead of time to check it out and make sure they had a spot for him, as I posted.

Now, at the hospital he decided not to do that and is convinced that he could still get the therapy at the rehab as outpatient. Well, ladies and gentlemen, H got that wrong too because he well, you know, cannot grasp everything. He is now upset that he cannot go there for outpatient therapy and I had to call the surgeons office so that she could send out an order to another therapy place. The surgeon does not like having a therapist come to the house and only does that under dire circumstances.

Now, he does not need therapy he can do it on his own because everyone at the hospital told him he did so well. He wants to do what is comfortable for HIM.
Friends, I just lost it at that point. I told him I love him, and I have stuck by him through thick and thin, but if this surgery goes south because he is being stupid, then I am going north because stupid is one thing I can no longer deal with. The whole thing is it is about what he wants, no care for anyone else and what I am dealing with with my leg and balance problems he does not care. I told him that what he was doing was not fair to me.

Dementia or not, THAT hit a nerve and he is laying low.

I am also putting together a report on his behavior about the surgery, his confusion about things, etc. and sending it to his PCP and telling him it is time to do SOMETHING. H is starting to be a hazard to his own well-being.

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kartwk | @kartwk | 1 day ago

I am also informing the Doctor about how H argued with the nurses about the medication he was getting, they were not giving him the right medication. The reality was that they were giving him the right medication but it came in different pills than the ones he gets from the pharmacy.

I had to check into this and assure him that the pills they wanted to give him were fine, okay to take. Then he settled down. Or when I just got home from hospital to a call from him saying no one at the hospital was taking care of him, that he should have just come home, he needed to go to the bathroom. I was surprised and asked him if he had hit the buzzer. No, H. had not done this, so he hit it and someone came to help him.

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ocdogmom | @ocdogmom | 19 hours ago

I just typed a big long response and when I went back to the previous pages to make sure I had your facts correct, the big long message has disappeared! Frustrating! So here is the Readers Digest Condensed version. I agree with your plan to record concerning behaviors for the PCP. I would put that information in an envelope and hand it confidentially to the receptionist the next time you have an appointment. Ask her to make sure that the doctor reads it before your husband enters the exam room. Or you could mail it. That way you may not even have to mention your concerns with your husband in the room as he would likely deny that he is having trouble if he is even able to notice it himself. One of the symptoms of dementia is a lack of self awareness. Hopefully the PCP will have your husband do an in office mental/memory test- takes about 15 minutes. This will give you a baseline of where he is at and can be used in the future for comparison. My husband's got gradually worse over the years and he was referred to a neurologist. Also there is a new blood test that your PCP can add to your husband usual lab work that looks for the amyloid plaques and tau217 particles that are associated with Alzheimer's. It is not a diagnostic test but rather a piece of information that can help determine the correct diagnosis. The gold standard for Alzheimer's is a brain PET scan which will show the changes and any other pathology that may be causing his symptoms. I am happy to direct message with you if you feel that is better for you. Or you can direct message me your email if you are comfortable with that. I am happy to share what I have learned over the four years we have been dealing with this dementia journey. Not what I had planned for my later years but it is what it is and I try to make the best of it. May God bless you and give you the courage and patience that you need.

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