My husband has Parkinson's and I'm finding it more and more difficult to have empathy. Any advice?

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anonymous732894 Asked October 2017

My husband has Parkinson's and I'm finding it more and more difficult to have empathy. Any advice?

My husband is 14 years into Parkinson's. I think he is Stage 5 - has most of the symptoms. He has absconded mentally from our relationship. He does not take responsibility for his condition or anything else much, doesn't exercise as he should, doesn't attend speech and therapy sessions. I find the apathy really hard to deal with. Every day is the same, when I get home from work and as if he has done certain tasks which I asked him to do I get "no not yet". I want to scream with frustration. Over the last month we have had a serious decline in mobility and I am unable to lift him. His personal hygiene is deteriorating. He is becoming incontinent, not every day but about twice a week I have to wash clothes which he has wet. He cannot handle any stress and when he is stressed he goes into spasms and can't move. Last night we flew back from visiting my brother in Texas (my first holiday in 6 years and I am still working to support us - the holiday was horrible dealing with his problems). He had lost his wallet in Dallas airport, when we arrived at our destination he could not remember having lost it nor that we had been away, didn't know where he was and went into a total anxiety fit. I had to try to calm him down all the way home in the cab telling him he was safe and on the way home. He wakes me up around 3.30 or 4 am every day to help him to the toilet because he finds it difficult to walk. I have to get up at 6 am to work and do a 30km commute each way in heavy traffic. I am always tired, angry and frustrated and don't even like the person I am becoming.
The scary thing is that if we are going to do something he likes, like going out to listen to music, there is nothing wrong with him, he walks quite normally and is ready before me and will just go out to the car. Drives me nuts because I have to wait for him all the time when we have to go to doctors appointments, etc., or if I have to be somewhere. I'm not sure what I'm dealing with here besides the Parkinsons. Any suggestions please? Also I am afraid to leave him alone because if he's having a bad day and falls, there is no one to pick him up.

Burnout Caregiving Parkinson's Disease Spouse Stress

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score 1 · Answer 1

If you are talking about getting him off the floor there is the Camel "inflatable chair" product that will air up and get him into a sitting position. Not cheap but a much better solution than getting yourself seriously injured. Let me know if you need details. Good luck.

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score 1 · Answer 2

My problem is that I can't lift him when he has a episode and freezes. I had spinal surgery 9 months ago and I'm afraid of hurting myself.

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score 0 · Answer 3

He is just as likely to fall in a facility as at home. You can give just as good a care as a facility but you may not want to. No one could fault you for reaching the point where you just can't handle anymore. That is when you opt for the facility. I fully suspect I may reach that point but I haven't yet. I always say I will know when it's time. I hope so

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score 0 · Answer 4

He sounds ready for a facility. Start looking into it, it will not ever get better and he can fall or whatever, you deserve better .

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score 3 · Answer 5

What you describe sounds like Parkinson's Dementia (also referred to as Lewy Body Dementia). One of it's features is fluctuating cognition. With the fluctuation (which is outside the control of the patient) caregivers often question if the patient is just being lazy. Everything that you describe fits into this disease, and it is outside of the patient's control. I have been where you are, and it's awful. It's important for you to accept that these symptoms are part of the disease and not within his control. It will help with your anger. Blessings,
Jamie

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score 0 · Answer 6

Congrats on the improvement- strange things can happen. My dad (towards the end of his nursing home stage) had bad dementia/alz. However one morning I stopped to see him and it was as if no problems existed. Asked about how all our kids were and had total understanding of what was happening. I have no explanation for that- a body can do weird things as it was a one day deal.

For sure get some help from home service providers as suggested above. Regarding the home aids you mentioned- contact me if you would like as I attend national tradeshows and have seen things most people do not know exist.

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score 0 · Answer 7

I just read a bit on WebMD about Parkinson's. It sounds as though the takeaway is that you never know, day to day, what to expect. How frustrating that must be!

It also sounds like depression can be a big part of the equation with Parkinson's. Is your husband being monitored by a psychiatrist who can nimbly change meds if they stop working?

Do you like and trust your husband's neurologist? Is s/he someone you can partner with?

It sounds as though you are personalizing your husband's symptoms. I think I would too. But it seems that many PD patients can have a different level of functioning almost everyday. I think you should talk to your husband's docs about how much to expect from him each day.

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score 1 · Answer 8

I encourage you to reach out to the Parkinson's Foundation, www.parkinson.org. They have great resources to answer questions. Also, you might explore hiring an in-home caregiver to give you a break - you could get someone to stay with your husband once or twice a week, all night, and then you could get a good night's sleep at least.

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score 1 · Answer 9

Thanks to everyone for their comments and suggestions. We have an occupational therapist and social worker coming to assess him this week. I have bought every home aid suggested to make his life easier. After all the stress we went through on vacation and for the first 4 days after getting home, I decided that if we had another night with so much distress I would call 911 and have him admitted. Since Thursday there hasn't been one wetting accident, he hasn't woken me at night and manages to use his urinal bottle and his mobility has improved to the point where he can walk with just a cane most of the time; sometimes even without a cane. What's with that? Im not discounting his Parkinson's, he does have problems and im willing to help as much as I can but my whole vacation was ruined because he allowed his anxiety and self centered behaviour to take over. This morning he is walking completely but he did struggle when he first woke up. Can anyone explain this huge change?

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score 0 · Answer 10

Maybe it would be best if you didn't depend on him to do any tasks. He might not be capable

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score 2 · Answer 11

You need to place your husband in assisted living. Talk to an elder care attorney to find out how you can afford it. Your husband cannot help his condition and should not be left alone at this advanced stage. Do it now!

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score 0 · Answer 12

Dad's PD is advanced. Confined to a wheel-chair, dysphagia, & needs help with all ADLs. And his neuro said today that he still has lots of life left in him. My understanding, tho, is the dementia can be very different from one person to another. Or is it possible you're dealing with Lewey Body Dementia?

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score 1 · Answer 13

All I can really say about this is that if he's not going to help himself then I personally would just walk away and let whatever happens happen. This sounds like it's the only option with you if nothing else is helping. You can lead a horse to water but you can't make him drink it. Sometimes there are situations where there's absolutely nothing you can do but just walk away and just know that you tried

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score 1 · Answer 14

Jan2017: There is one constant in your situation. As some have suggested, you should speak with your husband's physician. Good grief-I don't know how you are coping with getting up to assist him at such an hour and then trying to get back to sleep to go to your employer only a few hours later. That must be impossibly difficult. Since he is cheerful when he gets to do something HE wants to do, quite possibly you could have a trick up your sleeve, e.g. perhaps 2 times a week you could give him his fav treat and see if that makes him more pleasant. The treat could be 2 out of a large bag that you keep at your work. I'm not implying to add to your already full plate. This is a difficult situation and thus, a constant.

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score 4 · Answer 15

Very sorry to hear about your challenges. At the bare minimum I would suggest a medical alert that he can use if he falls when you are away. Going to the bathroom at night will likely get worse- 60% of folks with PD will develop "nocturia"- the urge to urinate many times a night. Often caregiver spouses are telling us they were getting up 5-10 times a night to help their partner- there is no way fro them to survive lack of quality sleep (and work a job in the morning?). In these cases we suggest putting a bedside commode next to a SuperPole or balance pole of a Friendly Bed (to save the dangerous night-time walking to the bathroom). Would be glad to offer other suggestions if you would want.

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score 8 · Answer 16

The hardest thing is to let go of the relationship you once had and accept this new relationship. I still miss my husband and what once was but I try to remember all he gave me in the past and continue to give to him in the present. It is so hard but I subsist on memories. You need help, and lots of it. Yes, it is normal for him to be able to walk when he is relaxed and freeze whenever he is stressed. Such a horrible disease.

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score 4 · Answer 17

I firmly believe that when a man is afflicted with medical issues, there’s a good chance he will go into denial and refuse to help himself improve his situation. He will shut down, withdraw from those who love him and retreat into his own world. In my husband case, he has been through countless rounds of rehab, both inpatient and out and has never done much of anything on his own to regain any mobility. He lies to the therapists about what he does. He is content to lie in bed all day and watch reruns on the television. He has never been diagnosed with any particular affliction and became weary of the constant tests and doctor visits and no real diagnoses. (I don’t blame him for that) More and more i find myself shutting down and pulling away from him. It’s normal even though we are all individuals with our own issues. I’ve done lots of research on this way of life and especially on this site, have found some priceless tools from the wonderful people here. Sending you peace and hugs!

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score 4 · Answer 18

My prayers to you and your husband that you both can work through this difficult medical situation. I am new to this website but I am SO great full and comforted knowing I am not alone. Our struggles are REAL bring caregivers. We have completely different scenarios yet the very similar struggles. God bless you both, my prayers for you both.

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score 5 · Answer 19

I like the suggestions above. It sounds like his care is something that you really need help with. Have you two discussed plans for the next phase? Do you have Durable POA, Healthcare POA signed appointing you?

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score 9 · Answer 20

You probably already know that apathy is a common symptom in Parkinson's and that a percentage of those with Parkinson's will develop dementia. Based on the limited amount of info you have given us I'm not sure why you are placing him at Stage 5 -

"Stage 5 is the most advanced stage of Parkinson’s disease. Advanced stiffness in the legs can also cause freezing upon standing, making it impossible to stand or walk. People in this stage require wheelchairs, and they’re often unable to stand on their own without falling. Around-the-clock assistance is required to prevent falls.
Up to 30 percent of people at stage 4 and 5 experience confusion, hallucinations, and delusions. Hallucinations occur when you see things that aren’t there. Delusions happen when you believe things that aren’t true, even when you have been presented with evidence that your belief is wrong.since he sounds much more able to function than that." (healthline.com)

I urge you to speak to his doctors about your concerns and to join a local Parkinson's support group to help you compare notes and find resources available in your community.

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My husband has Parkinson's and I'm finding it more and more difficult to have empathy. Any advice?

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