Follow
Share

My husband has been through quite a lot on the past 2 years. There was a period when he needed a lot of help with everything--transferring, dressing, showering, toileting, etc. He couldn't walk (due to bad shingles that affected the nerve in his leg); was super fatigued, due to bad anemia following blood loss during surgery; and then he had diagnosis of Parkinson's. He's doing way better now due in part to natural recovery (from the anemia and shingles nerve damage) and in big part to physical therapy and exercise. He's very motivated to exercise and graduated from wheelchair to walker after about 6 months and can do most everything for his own personal care--still needs some standby help in the shower and some help in dressing. His balance is still bad (Parkinson's) but he has good mobility now with his walker (rollator). So what's the problem?


I think he can do a lot more and that he's gotten very used to asking me to do small things he could do for himself. Granted, it might take longer, but he'd also be more independent. I think he could get up from his recliner and reheat his own coffee in the microwave; get himself food from the refrigerator or cupboard; get clothing out of the bureau, etc. He had OT as well as PT, and they worked with him on cooking while using the walker, and he did fine--but he'll barely try to fix food at home, and he used to cook a lot and really enjoys it. I think part of the problem with using the kitchen is that he's no longer used to it in his "new normal" situation, and is very paranoid about falling. (He's never fallen, knock wood.) I'm now able to leave him alone for longish periods if I need to --2-3 hours -- but we have to have things set up so as to minimize how much he needs to move around because he worries about falling. We've been getting into arguments and he gets angry when I say to him, "Can't you get that yourself?" when he asks me for what seems like the umpteenth time to fetch him something. I can understand him being reluctant to do a lot that involves moving around when I'm not home, for safety reasons. However, when I'm here I think it would be good for him get in the habit of getting and doing things for himself if feasible and safe. Any ideas? [We do have a home health person here two mornings a week for 4 hours at a stretch, so I'm not "on call" 24/7 as I was when he was much more debilitated.]

Find Care & Housing
His fear of falling is real.
Helpful Answer (1)
Reply to Llamalover47
Report

Newbie -
My DH also has Parkinson's and I agree, it is a challenge! His neurologist recently prescribed PT. Went to the local hospital and signed him up. Big surprise! Therapist was certified in LSVT BIG. If you haven't heard of it, Google it. We went four days a week for an hour each time. Basically, it is stretching exercises with an emphasis on BIG movements. PD patients have a hard time crossing the midline of their bodies, they are rigid, and thus the fear of falling. I saw a marked improvement in his balance, coordination, endurance and even speech after the 4 weeks. The re-evaluation proved it - he had more than doubled his pre-rehab abilities. He went from a 90% fall risk to 40%. We continue to do the exercises at home, sitting in a chair. If I feel he can manage it, we will progress to doing them standing, with a chair nearby for support. They also have LSVT LOUD to help with the loss of vocalization. Didn't have that prescribed, he gets his point across well enough ;)! Also, neurologist put him on Neupro patch 4 mg. This is usually prescribed for restless leg syndrome, but it acts as an agonist for Levodopa, prolonging the effects of this drug which every PD patient takes. It prolongs his "on" time. Hope this info is helpful. I know how hard it is, I've been on this journey for 6 years, I'm 68 DH is 71. He has the blood pressure of a teenager and will probably outlive me ;>). Please don't forget to take care of yourself whatever the cost. I have found that I need at least one weekend a month to recharge. Make it happen. Hugs and prayers to you
Helpful Answer (3)
Reply to crzyhorseldy
Report
newbiewife Apr 27, 2019
My husband was signed up for LSVT BIG shortly after his Parkinson's diagnosis two years ago, but unfortunately the shingles attack he had badly damaged the nerve in one leg so he couldn't stand or walk for a while. Now, he gets along fine with a rollator, but still has foot drop, wears a brace, and foot is numb, plus the PD balance problems, so it's not safe for hm to do the LSVT program standing. When he was getting outpatient PT and OT, the OT guy was certified in LSVT so gave my husband a bunch of the exercises he could do while seated, and he's still doing them at home. He also goes to a very good Parkinson's group exercise program at the YMCA. I know his fall risk score improved during PT, and he was able to walk some with walking poles or with the therapsit holding his belt. However, the therapist said he should still use the rollator and not try walking at home without it. PT also allowed him to regain his ability to climb stairs, if there is a good railing to hold onto.
(0)
Report
Sounds like my house!! I am so overwhelmed right now by my husband's needs and wants. I KNOW he can do more for himself but he chooses not to so I just keep trying to make suggestions to make things easier for him - some work and some he looks at me like I'm crazy. Of course I help him with things that could be dangerous - showering, hot coffee, etc. He fell again last night so I'm going to buy some kind of lift that we can have in our home to get him off the floor, since he can't get up by himself and he's too heavy for me. If any of you have any ideas, I'd love to hear them too! I don't mind helping him at all but how do you get them to help themselves?
Helpful Answer (0)
Reply to TiredSue
Report
Ahmijoy Apr 26, 2019
I understand your issues with hubby who is a fall risk. There are lifts that will raise a person off the floor. But I would urge you to exercise extreme caution when trying to use one. My husband is dead weight when he falls. I’ve had to call 911 more than once. He is what they call a “2 assist” which means it takes at least 2 people to transfer him. Without proper training, trying to get your husband up can be dangerous and cause injury to you both. If he tends to fall a lot, maybe a lift ( Hoyer) that is easier to transfer him from a chair or bed to a wheelchair.
(1)
Report
I had home health for mom’s issues. The doctor ordered it. I could tell right away that mom’s home health nurse was on top of things and said to her that I appreciated all of her advice and help and mentioned that she was extremely helpful. The first round of home health mom only wanted occupational therapy. The next time she did occupational and physical therapy. The nurse said they go hand in hand. That it’s always best to do both, not just OT.

She told me she had been the lead nurse at the hospital and trained other nurses. She was terrific! She toured my home and gave tips. The therapists did the same. Mom liked going barefoot so they said to get socks with gripping bottoms. Amazon has them. We put in a ramp by our backdoor for her to walk up to the door more easily. We got this thing called a car cane which helps her in and out of the car. Great little tips. Oh, a gadget to help reach for things, another gadget to button her blouse. Just everyday useful tips. Does help.

She joked saying that the young residents studying to become doctors did not appreciate her like I did. They hated that she knew more than they did. She stressed the importance of occupational and physical therapy. They really helped mom and she is 93 years old! The therapists got mom to do things I never imagined she could do.

In fact, the nurse and therapists told me to allow her to do what she could, that I needed to encourage some independence. The therapists gave mom exercises to do for homework. She followed their instructions. They handed her written instructions of what she needed to work on. They gave her putty, large rubber bands so she had no excuse not to do it. They told mom to get up and walk around the house every hour.

The therapists worked on balance because mom falls occasionally and strength exercises. They stress that everyone work on core strength to support everything else.

I had been listening to mom saying that she couldn’t do things. But they said she could do some things that she claimed she couldn’t, but to continue bathing her. She can’t shower alone. I do have the safety bars and chair in tub. That’s a safety issue.

Of course, she is very slow, has rigid movements due to her Parkinson’s. She got so tired of hearing them say, “Use it or lose it!” Hahaha, but I think she’s happier when she can do what she can. I monitor her to make sure she is safe. Sometimes I think she is going to make it to 100!
Helpful Answer (2)
Reply to NeedHelpWithMom
Report

Your DH sounds very motivated and active, considering all of his health issues and medical history. I might discuss Parkinson's with his doctor and read a lot about how it can affect the body and mind. I have read that it can cause issues other than balance, like thought processing, movement, nerve issues, etc. I might accept what he is willing to do and believe him at his word. And, I'd rather that he be cautious and not fall. That seems very reasonable to me, since falls and fractures are to be avoided at all cost.
Helpful Answer (1)
Reply to Sunnygirl1
Report
NeedHelpWithMom Apr 26, 2019
Thanks, Sunny for understanding how Parkinson’s causes issues for mobility. My mom has Parkinson’s and it’s a tough neurological disease. My mom says that her mind wants to do something but her body can’t follow the brain signal.
(0)
Report
Definitely get the OT back to your house and have him/her tell you BOTH at the same time what hubs can and should be doing. That way there is no confusion.

Ask for a written plan (make copies) then pin it up on the fridge. Refer to the plan when hubs wants you to fetch something again.

Falling is a real concern but the concern can not hinder most movement. It’s a gamble but, as long as your home has been checked for safety, you’ll have done all that you could.
Examples are;
decluter walkways, remove throw rugs, no electrical cords away from the wall, mop up all spills immediately, have rubber soled shoes that grip the floor, slowly count to five after getting up from sitting to stabilize and avoid lightheadedness, always use the assistive device (walker, etc.), have pant legs short enough to not touch the floor, do not walk on bare floors in socks, stand by at shower time. The OT should have gone over all this on their visits.

Sometimes tough love is the only way to get the person moving.
Helpful Answer (1)
Reply to SueC1957
Report
newbiewife Apr 26, 2019
Thanks very much for your answer. We've done all these things. Shower is mainly seated on shower chair, with standby help from me or a home health person who's here 2 days a week. (We're very fortunate to have long term care insurance for DH which covers this.) The OT he had was in an outpatient rehab place, where they have a kitchen set up for patients to practice in. With OT coaching, DH was able to prepare a batch of fancy German meatballs he's always liked to make. At home he helps out with peeling and chopping for meal prep--but does this while seated and seems to not want to stand at the kitchen counter. He's a good cook and really likes meal planning, trying new recipes, etc. We used to alternate weeks cooking--one week him, one week me. It would probaby be very helpful to have an OT work with him in our own kitchen, but I'm sure that wouldn't be covered by insurance. I know I shouldn't complain because DH really is doing not badly at all. I know it could be so much worse (and was for a while). It's mainly when I get multiple requests in a short span of time that I get peeved, when at least some of them he could do himself.
(0)
Report
My Dh just LOVES to be fussed, Breakfast in bed, then a few hours later, lunch. A long soak in the tub--2-3 hours, Then dinner in bed. Ah! Perfect life.

Furious wife.

After 2 heart attacks last summer he went downhill mentally, physically, spiritually--everyway you can imagine. He wouldn't get out of bed. He'd CRY...which was so shocking to me....finally I called his Psych doc and she reluctantly let him go on Zoloft. It DID help and then I asked for a bump up in dose and she refused, so I just worked on other things to help him feel more 'normal'.

One: (from his cardio doc) GET UP. SIT UP (no meals in bed) and STAY UP. Even if is was just moving the pity party to the couch, he had to be out of bed.

I had to stop feeding him. I would make breakfast and dinner and they were served on the kitchen table. Often he couldn't muster the energy to come out of the bedroom to eat, and there sat his dinner until the next day.

I am only 62. I have already nursed him through Primary Liver Cancer, HepC, a liver transplant, 4 weeks of a hospital borne infection, 84 weeks of a brutal chemo regimen, and stroke, heart surgery, a horrible motorcycle accident with major concussion--then this.

I'm a great nurse, but I have just created a monster. He wants waiting on, hand and foot. I have to bite my tongue so many times.

He's gotten better with taking care of himself. He still works FT and this doesn't seem to have affected his ability to kick into engineer mode when a jobsite needs him. It's just home where he is 'so very, very sick' much of the time.

He did complain loudly and mightily to the kids---and they bought into the 'lazy mom' line for a while. Not any more.

Really, he does feel better when he's actively doing stuff rather than sleeping for days on end.

But you will have to be tougher, something that is very, very hard for me.

Good luck!
Helpful Answer (4)
Reply to Midkid58
Report
NeedHelpWithMom Apr 26, 2019
MidKid,

You’re an angel! Men can be babies when sick. Haha, one time when my hubby was sick he asked for Sprite and then told me the Sprite had too many bubbles in it! I just looked at him and said, “Are you serious?” LOL
(0)
Report
Good Morning,
First, be thankful that he is cognizant enough to realize that he should not
be overly active when you are gone!!  It also sounds as if he keeps himself as strong as can be expected.  I would guess that you might be able to improve his reaction to getting things for himself by your reply.  It is so easy to get frustrated with someone else.  I know!!!!
Maybe "Sorry dear, not this time, I am in the middle of.....................!
getting dinner, doing laundry, resting from mowing the lawn," 
I don't know!!
"Can it wait until I have finished...........?"       or maybe
"I suspect that it will be faster for you to do it yourself than to wait until I am done with..............."
Newbie, I am sure you have tried some of these at one time or another, just make it more often.  Remember, a soft word turns away wrath!!
Bless you for being there for your DH.  And Bless You for caring enough to ask for help!!
Helpful Answer (2)
Reply to vicky64
Report

His fear of falling is a rational thing, I think the only way to get over it is to provide whatever adaptations needed in the home - an Occupational Therapist might have some helpful suggestions - and for him to practice moving more to increase his strength and confidence. Can you get out for walks; down the halls or around the block, or mall walking?
Helpful Answer (2)
Reply to cwillie
Report
newbiewife Apr 25, 2019
My husband's strength is pretty good and he's very motivated and dutiful about exercise. We walk outside, weather permitting, about .6 miles 4 or five days a week and go to local YMCA other days fof group exercise and to use weight and stretching equipment. He also does a lot of in home exercises he learned in PT. Bought a new refrigerator that has freezer on bottom and other shelves on top so husband could more readily reach things. I do think fear of falling is the main problem, combined with the fact that it takes a lot longer for him to do things than it does to just ask me. He says he hates being dependent and wishes he could do more, and I think I he genuinely means it, so I hate to complain and ask him to do more. He feels belittled and that I am rubbing it in that he's disabled. Maybe some more OT might help, since the advice and training would be from a professional
(3)
Report
Let him get angry. Let him sulk and huff and puff. And, let him get off his duff and get things himself.

My husband is 69 and has been bed bound for the better part of two years. I do everything for him but feed him. He does have many health issues. He’s been to countless doctors and had a myriad of tests. He, himself is pretty much convinced his immobility is akin to hysterical paralysis. But, he has had at least 6 rounds of physical therapy. At one point, he was in a rehabilitation facility for almost five months. For most of those rounds of therapy, he was totally undedicated. He did none of the recommended exercises at home. He sat in his chair and then, lie in his bed watching television and smoking. He does not abuse the privilege of having me wait on him hand and foot, but if he had done even the barest minimum of what the therapists told him to, he may not be bedridden today.

We do them no favors by toting and fetching for them. I wish I’d recognized that fact years ago.
Helpful Answer (13)
Reply to Ahmijoy
Report

Ask a Question

Subscribe to
Our Newsletter