Vascular dementia and a fresh pacemaker; husband breaks all connective devices when he raises his arm. Any suggestions?

Edna: You're welcome.

Edna; you sound like an eminently sane person. Keep on keeping on, and let us know how you both are doing!

Ladies and Gentlemen, Thank you so much for all of your excellent suggestions. I know that each and every one is from your hearts. We are a community.
My decision is this:
Current therapy is not working. I was in a state of total anxiety which spilled all over my totally innocent husband and lover.
I have done a complete turn around.
However, as long as he will tolerate it, for the next six weeks, we will continue the t shirt at night with his left arm tucked inside.
The rest of the time, I will simply be proactive (good word, there) and prevent the need for him to raise him arm as much as possible.
No more shouting or crying. All that does is create angst.
No more daytime physical restraints of any kind.
It was driving me nuts and as a result keeping us both in a state of turmoil.
The past 18 hours has been peaceful. Want to keep it that way.
He is 85, right handed, in good physical shape for his age. We walk at least 2 miles a day up and down hills.
Thank God for this forum.
Thank God.

Is your husband left handed? Is that why he keeps lifting his left arm? My husband is left handed and the instructions on the pacemaker brochure said if he is left handed to put the pacemaker on the right side. I had just given him a rifle for a Birthday present that cost $2,500.00 and it shoots left-handed. The surgeon balked because he said it was quicker and easier to put it on the left side. I told him, not going to happen. The folder said to put it on the right side if he was left handed and that was what he should do. I used the argument that he wouldn't be able to shoot a rifle or shotgun for the rest of his life, if the pacemaker was on the left side, because the recoil of the gun would hit the pacemaker. Anyway, to make a long story short, the pacemaker is on the right side. Surgeon still remembers me, and I don't think it is with love. I don't care.

Also, he was told not to arc weld again. I called the manufacturer, he suggested my husband keep the welder away from himself by pulling the welding cables out straight and working as far away from the machine as possible. The Manufacturer also said, "Use common sense, if you feel funny, stop welding".

A lot of time I think Doctors are just covering themselves with instructions and have no thought for the patient's quality of life.

My mom had her pacemaker checked today. I asked what to do for a friend. They told me the same thing. Just try for at least 2 weeks. That's all you can do. After that they don't really need the sling because it is actually better that they start moving the arm. They understood that everything is hard with dementia. I would just ask your doctor because you'll feel better!

Call the doctor. Ask if movement restriction is really necessary. Remind doc that this is a dementia patient.

Llamalover47, thank you. However, I use the t shirt only for bedtime. When he gets out of bed, it is back to regular clothes.

A person with vascular dementia is not going to remember not to raise his arm. Their short-term memory is, for the most part, non existent. Suggestion: during the day, after you've put the t-shirt on, put duct tape around his waist? If it's a crazy idea, then so be it. Tell me. What does concern me, though, is his walking two miles, e. g. what happens if he #1 gets lost, #2 trips and falls and #3 is a target for a person causing him harm? That is scary.

DigitalBanker, I must have mislead you. It is not the pacemaker device that he breaks, it is the restraint devices that he breaks. Such as safety pins, etc.
When I remind him to keep his arm down, his pat answer is that his arm does not hurt. He does not remember that he has a pacemaker, even when I show him the fresh incision in his upper left chest.
I have contacted the cardiology department at our VA, and they said to not restrain him. So. I will not restrain his arm anymore.
That makes sense to me, because to gracefully raise his arm for whatever reason he has is much less traumatic to his pacer wires than him straining against a restrained arm, and in the process, breaking the restraint and forcefully overshooting his arm.

Love doctors. They should be aware that a Dementia patient will not do or can't do what u want. When Mom was in rehab the therapist said she wasn't following instructions, duh, "She has Dementia" I said. She hadn't been able to follow directions for over a year. Good Luck

I personally would just ask the doctor for a different model with better wiring. Explore your options on this one. If he's going to keep breaking them though, I would consider just not having any more installed because the surgeries and the devices are very costly. If he's only going to keep breaking these devices they'll be of no use to him and it would be pointless to keep replacing them every time he breaks one. If this turns out to be the case, you'll probably have to find other alternative measures to deal with his heart issues

Off topic, but related to following doctor's orders literally:

I spent several days in the hospital after being diagnosed with diabetes. Each day I got two very big bottles of diet coke. I don't like any pop, so I offered it to the next aide who came into the room. (I never got turned down.) When I got one with my breakfast the third day, I asked the nurse why I kept getting them. She had never seen that before so she looked at the orders. The doctor had written "2 liters diet coke/day" when what he meant was "up to 2 liters of diet coke if patient asks for pop."

It is amazing to me how many doctors who are perfectly competent and even excellent in their fields are totally ignorant when it comes to dealing with persons who have dementia. It amazes and angers me! EVERY doctor in every field should have at least a basic understanding of the limitations and challenges dementia involves.

There are doctors who specialize in dementia care, of course. I hope your husband has one! That is the office I'd call for advice. This behavior is not a cardiac problem, it is a dementia problem.

In the future, if you foresee an obstacle to directions you are being given, explain that obstacle immediately and ask for advice, as CM suggests. You may still have to call the dementia doc (and post here!) but by explaining and asking you are contributing to the education of that clinic.

I loved seeing the article CM found. That was a small test and not all doctors would be willing to change their practices until further testing is done, but at least it should be reassuring to you to know the restraints may not even be helpful. We know that restraints on a person with dementia are definitely not helpful for his behavior and peace of mind. I suggest discussing that article with the surgeon.

The staff at the TCU complained that our mother would not keep her arm in the sling. (Not a pacemaker issue.) Sure enough when I walked into her room she had both arms free and was sitting up doing crossword puzzles. By coincidence the doctor came in. I mentioned the dementia and the difficulty of keeping Mom's arm in the sling. His reply? "Don't worry about it. The sling is just to improve the comfort level while she is healing. If she is comfortable without it, that's fine." !!! Of course the staff has to follow the orders they are given. The orders just say, "Sling," they don't say, "Sling as needed for patient's comfort."

As to the issue of whether you should have decided to have the pacemaker at all, as I understand it keeping the heartbeat steady contributes to the patient's comfort. It does not extend the patient's life. My husband was adamant that no measures be used to extend his life. He had his heart surgeon take out the defibrillator but continued using the pacemaker. He had a DNR order and as far as he was concerned the defibrillator violated that. But he was not at all opposed to being comfortable.

He should have been given a restraint - I know my DH was. It went around his waist and held his arm in place.

It worked.

I haven't had anyone close need a pacemaker so far so I'm unfamiliar with the exact restrictions but I'm seeing a blend of suggestions here. I completely see Countrymouse's point about restriction placing a focus on the action having dislocated my shoulder in the past and needing a sling and swath (I also had pain to remind me so...). However I also learned just how much we make that move without realizing it and I know men, in particular for some reason, who like to lay back and raise an arm when relaxing or move their arm/shoulder around, I guess to get kinks out or something but it's a natural habit for them that they don't really do consciously and short term memory loss I can see would make it impossible to even try to catch themselves, remember they had surgery or think better of it. So I'm wondering if he needs to keep his arm at his side strictly or there is simply a point say 90 degrees he isn't supposed to pass. If it's the latter maybe something like shoelaces tied to belt loops that stop his arm at that point but give him some freedom so he doesn't feel totally restricted. If he needs total restriction (which is going to create the need for rehab because 2 weeks or more of that is going to start his shoulder to freeze, painful rehab) there are several types of slings and
braces" that will be hart to get out of and accomplish that. Try Amazon even it has an abundance of options. I'm trying to remember id a figure 8 brace prevent's raising the arm or the injury did that...then are used for broken collarbones. Worth looking into, it should say if they restrict some movement, because if it does it would be perfect.

The other thing I was going to suggest and CM sort of did is give the doctors and or surgeons office a call, explain the issue and maybe they have suggestions. It's very possible they have run into patients with this problem before given the number of pacemakers they put in. By the way it sounds like your husband while he may have this terrible disease (VD) still has a full and happy life and that he contributes to his families full and happy life so please don't second guess yourself for doing the medical things that extend that. It sure doesn't sound like he's close to the end and who can say how long it will be before he isn't living in and enjoying his life and yours. Good luck on curtailing that arm lifting, think about it this way this new need for you to come up with ideas to troubleshoot his short term memory issues is exercising your brain the way they say helps keep our minds sharp!

Well, you might have to do the large ace wrap and wrap his arm in with torso. He still will probably try to use hand, but hopefully you could keep arm secured to body. There are also "shoulder immobilizers" that are used after rotator cuff surgeries. In addition to sling, they have a "pillow" that sits under arm, about waist level and that has straps that go all the way around body. Those are I think about all the options that might work w/ your husband.

Countrymouse, here are some of the reasons he raises his left arm above his head:
He is short. Just to get a coffee cup out of the cupboard gets his arm above his head. Getting in and out of the car, he reaches for the handle near the roof of the car .
The childproof locks on the exit doors in our house are above his head.
To put on or take off a shirt. (I tried getting him to wear a button up shirt. He took it off 4 times and put a sweater on 4 times .)
It angers him every time I remind him to keep his arm down. Then I have the ill will episode. He does not know why he is angry (short term memory loss), but the anger remains for quite some time. My husband has always been loving and kind.
To take a shower. Oh my. So we have been showering together.
It is very difficult to constantly observe and prevent these actions, but I believe the word these days is "proactive". I will not use the childproof locks anymore.
He ignores the coffee cup I have taken down for him.
I do not have eyes in the back of my head.

Thank you, Grandma1954 a d Countrymouse!

There are slings that also go around the waist so that the arm can not be raised. This is the same sling a friend that had rotator cuff surgery used.

Edna, wouldn't it be a good idea to look at what is making your husband want/need to raise his arm above his head? I mean, that is quite high. I haven't thought about it closely, but I can't remember offhand when I last needed to do that - except dancing along to Mamma Mia which happened to be on TV last night.

Whereas, if I felt something pulling my arm in towards my body, like a sling, or my t-shirt being caught awkwardly, I'm sure I would exert myself to get rid of it.

Look for the trigger, for whatever is making your husband lift his arm in the first place, and try to get rid of that.

And if he *doesn't* habitually raise his arms, and this is a purely preventive measure, then it seems counterproductive and it might be better not to do it. You do have to wriggle quite hard to dislodge a well-sited pacemaker lead, especially after a couple of days post-op.

And next time a doctor or surgeon gives you instructions for patient care that you know are going to be a challenge, ask them how they suggest you do it.

You might also like this article from Baylor University in Texas
(to see the whole article Google NIH reference Proc (Bayl Univ Med Cent)v.22(1); 2009 JanPMC2626349):

Appropriateness of sling immobilization to prevent lead displacement after pacemaker/implantable cardioverter-defibrillator implantation
Aster Naffe, RN, CCRN, Mini Iype, RN, Mini Easo, RN, Sandra DeJong McLeroy, RN, Kelli Pinaga, RN, Nancy Vish, RN, PhD, Kevin Wheelan, MD, Jay Franklin, MD, and Jenny Adams, PhDcorresponding author
Author information ► Copyright and License information ►
Go to:
Abstract
After pacemaker/implantable cardioverter-defibrillator (pacemaker/ICD) implantation, patients are often required to immobilize the affected arm with a sling to minimize the risk of lead displacement. We examined whether performing a resistive range-of-motion exercise protocol after pacemaker/ICD surgery would result in lead displacement and, therefore, whether sling immobilization and activity restrictions are justified. Ten subjects who had undergone pacemaker/ICD surgery performed four individual resistive range-of-motion exercises (three sets of 10 repetitions for each: one warm-up set without weight and two sets with a 1- or 2-pound hand weight) with the affected arm prior to hospital discharge. For each subject, an electrophysiology nurse specialist used a noninvasive device programmer to evaluate surgical lead placement before and after the exercises. As an adjunct to the study, we queried clinicians at 48 US hospitals about sling immobilization and activity restrictions after pacemaker/ICD implantation at their institutions. No lead displacement occurred after the weightlifting exercises were performed. Based on these results in a small group of patients, it appears that requiring the use of a joint immobilization sling is overly restrictive, promotes fear, and hinders recovery. We encourage the development of consistent discharge instructions that will promote early mobility and a safe and rapid return to normal activities.

Thank you, BootShopGirl.
Thank you.

I hope you can laugh at hiding the sling 6 months from now. I have a thread started that my mother is a master stasher of everything. This whole problem is the dementia and short term memory problem. 4 pacemakers in this family but not a one who would not keep the arm down but my mama. Try the shoestring belt loops but just 2 because you have to undo them so he can drop his pants. Good luck sugar!

Yes the big t shirt over the whole shebang helps too. Tying sling to belt loops in 2 different loops helped too. A man would have more pants with belt loops than my mom haha! You also have to remember it is nobody's fault and all you can do is so the very best you can. Had I have known my mother had dementia, I'm not sure I would have put her through this. However, she had an event like your husband and of course you listen to what the doctors say. I also sewed an old bathrobe sleeve to the body of the robe for evening. Mostly just tied her up and nobody was happy.

Bootshopgirl, Thank you for your answer. I may try the sling again, with your modifications. He kept taking off the sling when in another room where I can not see him, and hide the sling!
Thank you.

This is what I did for my dementia mom. I pinned the sling down with with horse blanket pins. ( we own a saddle & boot shop). These are giant safety pins like for a Scottish kilt. I also had to use a long strap like a suitcase strap and wrap out around the whole arm and sling and attached it on the right side back where she couldn't undo it. At night I tied her whole arm and sling down with a bath belt robe. This girl would NOT stop trying to raise her arm. This was so awful and I'm sorry you are going through this too. After 2 weeks we had the check and her 2 leads were somehow still attached they thought. They get mad, you get mad with worry, and you want to smack them. It is so trying for all. My mom was at home so I had to sleep there and just keep tying that arm down. If you can just make it 2 weeks the heart doc said it will be alright. You are not alone.

Edna317 here again. Husband had his pacemaker checked. Had to have the voltage increases to insure capture. Now instead of 4 weeks of "no left arm raising", the duration has been increased to SIX MORE WEEKS.
Please help with suggestions on how to keep his arm down.
This is what I am currently doing:
At night, in bed, a t shirt pulled down OVER his left arm. This works f a i r l y
well. In the daytime, I tie a shoelace through his belt loop and the other end through a watch. This works as long as he keeps the watch ON.
Quite a sight to see a wrist watch dangling at his side.
He is physically fit for 85 years old. He walks at least 2 miles a day, up and down hills. He was diagnosed with Vascular Dementia May 2015. He is kind and loving. I know some people will criticize me for wanting him to have the pacemaker.
He no longer has a driver's license, and the guns are gone.

Edna, sorry your question didn't get answered. I am moving your question back to the front of the list. Hopefully someone who has had this experience can answer you.