DH is soooo uncooperative!

JudyMorrowMaloney

My DH has bvFTD. He has an infection in his eye, back problems, and a very BAD attitude. He won't go to his doctor's appointments. Every time I set up an appointment for him, he tells me to reschedule it. He has trouble walking and uses a walker but even with that he struggles. I wanted to get a wheel chair for him, but he said he will not use it. It seems that no matter what I try to do to help him, he says "no" to everything. Does anyone else go through this? What do you do? I'm afraid that the doctors will cut him off if he doesn't go to his appointments.

jfkoc

Please do not tell him about an appointment. Just stop at the Drs on the way to a drivein for lunch.

What exact problems does he have with his walker?

Denise1847

Could you contact the doctor to explain what is happening? He/she may be able to prescribe some meds for anxiety. The doctor will be able to tell you if there is a medication that might help with these behaviors.

My DH was non-compliant after his detached retina surgery. No matter what, he would not keep his head down and there was nothing I could do to get him to do it. Unfortunately, he lost the sight in his affected eye. I tell you this so that you don't feel guity, just do your best and be at peace.

storycrafter

Good suggestions above. Throwing another idea out there. (I don't know your situation and whether this would be feasible.) Could you have the appointment be for you, and you need him to come along to help YOU? For example, you need help hearing and remembering what the doctor says / you need his support; often people have a companion along as a second pair of ears, or just for moral support.

When you do get in to see the doctor, if possible sit in a seat behind your dh's direct line of vision to the doctor; sometimes you can nod or shake your head to signal the doctor, or mouth 'yes' or 'no' in response to questions.

Bring an extra written copy of your main concerns - brief, factual points/questions listed in priority order, in easy-to-read form. Ask that staff make sure the doctor reads it before the appointment. I always take another copy to hand to the doctor in case he didn't read the list ahead of time.

Hope you both soon get the support you need and that things improve. Keep us posted when you can.

JudyMorrowMaloney

I definitely can try to just not tell him about the appointment or say that the appointment is for me. The problem is when he can't walk I have no way to get him to his appointments without a wheel chair because he refuses to use one. His mantra is "if I can't walk there I don't go." Luckily his eye doc is treating his infection even though I can't get him to go but I don't know how long it will go on. Even with the walker, he gets out of breath and his knees buckle.

Jo C.

I learned never to make a plan known, never to broadcast a doctor's appt., and never, ever to discuss using the wheelchair. I got a wheelchair without telling my LO and put it into the trunk of the car. We simply went to the doctor for "my" appointment and planned on going for lunch or a dessert treat afterward. I took out the chair without saying a word and it worked.

Got to the doctor's, took the wheelchair out and said the doctor had prescribed it for all of the patients he was seeing as the ground/asphalt had some difficulties. OR . . . the doctor can send as staff Member out to meet you with a chair or use the one you have rented and say that the doctor wants the patients ushered in; it is a new rule they are trying out.

Your husband would benefit from having a full set of labs drawn to ascertain whether he has anything physically happening that would impact on his behaviors. A UA should be done to rule out a UTI which can cause significant behavioral changes. Your doctor needs to know in advance about ALL of the problem issues and changes; not to do so would hinder a good exam. You can give this in writing prior to the appt., or you can also make a call or go in for an appt. yourself to present the issues to the doctor prior to your husband's appt.

AND . . . hopefully, after exam, the doctor will prescribe a med that will help with the behaviors. If the doctor is a dementia specialist all the better. It may be, that due to the changes he is having, he may have to be admitted to a hospital for a day or so to be able to adequately assess him in exam and get labs and consults done while an inpatient. Just a thought on that. If he does not have a dementia specialist, if he is in the hospital, a specialist can be called in as a consultant before discharge.

AND . . . the other thing is, if he is a danger to himself which it surely seems he is, another option would be to have him admitted to a local GeroPsych Unit which can assess him on a 24 hour continuum and initiate meds while watching for effectiveness and any side effects.

Since all efforts to help at home are failures, it may be that he needs that hospital or GeroPsych level of care to get things on track. If this were me, I would make an appt. with the doctor for me alone to discuss all of this up front before getting my LO in for his appt. so that ALL difficulties are discussed openly at the level they need to be as you will not be able to be open if your husband is present to hear your words to the doctor.

Let us know how it is going, we will be thinking of you and we care.

J.

CStrope

my DH also has mixed dementia, with bvFTD and Alzheimer's. My word to describe him is non-compliant! No matter what it is.....nope, I don't want to do that, or not me. Everything. I make up a lot of stories to get him to do the necessary things.

JudyMorrowMaloney

Well he did it again! He was supposed to have an appointment with a spine surgeon, one he was nagging me to schedule, and once again he told me to cancel! I knew this was going to happen!

JudyMorrowMaloney

Denise1847

When you say "spine surgeon", I get worried because having any kind of surgery is very difficult for a person with dementia. Can you imagine how noncompliant he will be with post surgery and recovery? Also, anesthesia really messes with dementia patients. I say all of this based on my personal experience with my DH's having knee surgery. I also had a fusion and decompression. It is a very difficult surgery and recovery. You cannot bend, twist, turn, lift. Please don't go for surgery and that is what surgeons all want to do.

I am so sorry you are going through this. I have learned that I am not going to fix this disease and will not allow it to take me down.

Jo C.

Oh gosh; Denise makes some very good points re having a spinal surgery considering the behavioral issues. How do you know this is a specific spinal issue that requires a surgical approach? I did not see that in your Post. I wonder; if surgery is not a good course for him due to not being able to comply with post-op needs/instruction and pain; I wonder if it would be good to find out if a spinal injection or other non-surgical option would be helpful rather than surgery itself. As it is, it sounds as though he could not cooperate to do a spinal program with rehab P.T. rather than surgery or even if that is in fact an option for his specific condition.

NOTE: Has he had an MRI of his spine? Nothing can be decided re any approach/procedure or even be well diagnosed without that MRI when it comes to back pain. Is his inability to walk secondary to back pain? Has he had diagnostics before regarding this issue?

NOTE: It suddenly cames to mind; FTD can also cause the inability to walk, has that been ruled out? This may be a reason for the failure of his lower extremities which spinal procedures cannot help.

NOTE: Is he on meds for his FTD induced behaviors prescribed by his dementia specialist? If not, why not? Was it contraindicated for some reason? My LO had bvFTD and the only saving grace when all was a nightmare, was Risperdal which I dragged my feet about doing, but once on board, for my LO, it was nothing short of a miracle in the peace it brought my LO. I only wish I had approved of it sooner.

If a spinal issue causing pain has indeed been diagnosed by his doctor, there are some non-surgical options. Spinal injection is sometimes an option for back pain for some people and can be done in a hospital in Interventional Radiology under fluoroscopy. A physician specialist; an Interventional Radiologist, performs the procedure; it does not take long at all. Your husband may have to have a sedative to gain his stillness for the procedure, but once done, it does not usually have any special rules to follow for recovery except a few hours rest. In some patients this works well with good temporary outcome; however; do some reading as it does not last a long time, (often six months or so), and they can only do that procedure two or three times, and as with all procedures, there are some definite potential risk issues. Cleveland Clinic has some good and complete online information re spinal injection. You would have to ask questions to see if this is one of the options for his specific condition and ask about all potential risks and expected outcome. I would only let such a procedure be done by a specialist who performs this as a routine part of his/her specialty and of course, that it is done under fluoroscopy.

In the meantime, it does sound as though your husband could use medication adjustment to bring him peace from all he feels with the effect the FTD is having on his brain, and which would of course also bring you some peace and bring the both of you a better quality of life. It would also be necessary to have the physician determine whether it is the FTD that is affecting his inability to walk. it eventually happened to my LO with her FTD. If that is the cause, surgery will not help.

I am so sorry; a dementia condition with such issues often limits what can be done. As I well know; bvFTD is like Alzheimer's on steroids. it is unbelievably difficult for all concerned. Let us know how it is going; it is not an easy situation and I send best wishes for a better approach to your DHs behavioral dynamics which will mean medication that is effective.

J.

PookieBlue

Judy,

My sister and I both had Regenerative Therapy for our chronic back pain. The outpatient procedure we both had was (PRP) Platelet Rich Plasma. I had mine in Beaverton Oregon (Restore PDX) now located in Lake Oswego, OR and she had hers in Denver, Colorado. Six months after the procedure my pain level dropped from a constant 8 to 10 down to a 2 and many days no pain at all. I had lived with severe pain for over a decade having over 90% spinal canal narrowing. I had tried everything except surgery. The neurosurgeon was planning on putting in titanium screws and recovery would take up to a year. Being sole caregiver for my DH would be impossible under those circumstances. 

    PRP procedure was not covered on Medicare, but I was able to use my (HSA) Health Savings Account. It has been three years since my procedure and I still have pain free days. I have had to do more heavy lifting than I should as my DH is not able to help much. 

    I’m not certain how many regenerative clinics are available across the USA, but the centrifuging done is not comparable between clinics. The clinics associated with Regenixx I believe were the first and have the best results. I am so glad I opted against the screws in my back. 

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JudyMorrowMaloney

Thanks for your comments everyone. He has had an MRI which shows a slipped L5 disc. I will look into whether or not the shots will help. I like the idea of PRP. I will read more on it. That might be the answer to the pain. I'm not sure what the answer is to his uncooperativeness. Maybe there is no answer. Maybe I have to just except it and plan for the future. I might look into getting him into palliative care. He doesn't want any more tests which means it might be hard getting him evaluated to see if its the dementia that is causing his inability to walk. Does anyone else have a LO on palliative care? How did you go about getting them on it?