Married 35 years. Wife diagnosed 5 years ago. Her issues are freezing when walking, no tremors. Was told exercise critical. For the past five years she has simply ignored all the advice. Has relied on a power chair. Now she is almost unable to walk at all. I am angry. I have made many changes in the house and built a number of items all in an effort to improve her quality of life. I feel that as a partnership we each need to do what we can to fight the disease. She has done nothing, in my opinion.
Her refusal to exercise has allowed the disease to progress more quickly and our ability to live a happy life as partners has deteriorated more quickly. I feel she has abandoned the marriage by not doing her part. I don't want a divorce, but neither do I want to sit by and watch her continue down hill, dragging me with her. I think I have done more to help her, care more about her than she care about herself.
Doctor said apathy and depression is part of Parkinson's. OK, but doesn't she have some responsibility to herself, her marriage and our partnership to fight? She sees a psychiatrist several times a year and has never expressed concerns about apathy. She is being treated for depression but has never said her lack of desire to exercise is a problem.
DO I go or do I stay? I do not intend to leave her. I will continue to care for her, I just don't want to be tied to my marriage vows anymore. Outside relationships are not an option for me as long as I am married.
What do I do?
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ProfessorDummy
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19 Replies
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Exercise or not: Professional researchers report 10 maybe 15 percent improvement with exercise.
you don't really know how she feels or how much she is capable of exercising .
There was no man more stoic than my husband , and you have to be stoic if you have Parkinsons . as hard as he did try not to give up . parkinsons won as far as mobility the struggle became too much .
it's the symptoms you cannot see that is the biggest factor
Rather than "she refuses to exercise" I think you should think like this "the condition prevents her from being able to care or engage enough with the world to exercise".
Maybe at some point you will leave her, but it's not your fault or her fault, except that PD is part of who she is, and doing what's best for yourself is part of who you are. Saying "she's bad, I tried" is a justification. "PD sucks" is the reality.
If she's angry at you for being angry at her, then she's definitely not going to exercise. If you're going to stay with her, there's a small possibility that you might figure out a way for it to be more fun for her. Like swimming in an outdoor pool or nice little walks. It doesn't need to be a set-time that's really vigorous, but an all day thing, like gardening, with more vigorous time period if she can.
Seeing the psychiatrist several times a year may be a waste of time & money unless he/she is familiar with Parkinson's and its affect on a person's moods and motivations - especially if the patient won't even mention such things (eg. apathy) to the practitioner. It would seem wise to share your understandable dismay over your wife's apparent resignation to an expedited decline - and your understandable fears of being brought down in the process - with her.
I recently posted about recent studies in the field of 'neurogenesis' (the ongoing process of neuron regeneration) that demonstrate our ability to influence the rate at which this critical process occurs though our diet and lifestyle. We have the ability to choose a neurohealthy lifestyle, or a neurotoxic one - to slow aging and decline, or to expedite an early demise. A healthy diet together with an 'enriched environment' - which basically involves regular engagement with people, things, and activities outside the confines of one's home/refuge (versus the typical PD patient's tendency to withdraw from the world outside) - is key.
Expressing your trepidations and giving your wife the option of committing to a sincere effort to adapt a more 'neurohealthy' diet/lifestyle (to make a regular effort vs giving up) prior to ending vows may serve to ease your conscious in the event you are ultimately forced to choose between grabbing a life-vest or going down with the ship...
Sounds to me like you are very angry about this, know you are, feel you are justified in having this anger, really don't have a solution and are pretty unhappy.
My opinion is that you really need to have some deep conversations with a professional psychotherapist.
You could deal with some important questions:
Do you feel "this way" all the time?
What responsibilities does your partner have to you in terms of being proactive in her
health care?
How effectively are you communicating your feelings to your partner?
What is a reasonable amount of frustration and dispair for you to carry?
Why isn't the message you have to give not getting across?
Why are you putting up with this situation?
Parkinsons is typically not a one person disease. Two people have it. One has the neurological degeneration, the caretaker has the increasing restriction of their life as burdens of physical deterioration and mental deterioration have to be accommodated.
Hearing your side of story (only) it would seem that your partner is not carrying their part of the load.
Hmmm...I relate. I feel like I'm angry most of the time. Dave has never been one to "follow orders", so any exercise suggestions fell on deaf ears. After six years of rapid progression, life is a series of transferring from lift chair to wheelchair, wheelchair to shower chair, or wheelchair to van. I know the person I married is still inside there somewhere, but the person on the outside is a petulant, whiny child. He whines because I won't let him use the power chair (his eyes close involuntarily and he can't reopen them), whines because I ask him to do transfers and dressing in a particular manner (he weighs close to twice my weight, and I prefer to accomplish these things in a manner that is safe for both of us). He refuses to accept the thought of an outside caregiver, even though the VA would pay for it. So here I am. I promised God and my husband that we were in for better or worse, and I take my vows seriously. I also love the man I married, and will give my all till there's nothing else to give. Meanwhile, I try to get out often with my gal pals for a movie or meal, and curse like a sailor when I get frustrated. Dave may sometimes feel marginalized when I tell him I don't have the energy to push him through the grocery on any given day, but overall, I believe he knows he is loved. I just hope I can keep on trucking, keeping him as comfortable as possible along the way. I only hope that I will be smart enough to know when the time comes to insist on help...
It's very important for caregivers to have good self-care. Also might be helpful if you can get into a support group. I attend a once a month support group for caregivers of Parkinsons and truly benefit from it. Also, individual counseling for both of you might be more helpful than couples' counseling. Giving you both a place to talk about the changes/frustrations/fears that you both are experiencing. Just a thought..... Is it obvious that I'm a counselor in my professional life?
All the above posts are really getting to the issues. I agree with clajac the most. You both need counseling together and probably apart plus a support group that should include separate sessions for you, the care giver. Good luck.
Request a meeting with her Psychiatrist as well as her neurologist and discuss these problems, hopefully they may help you. It sounds to me that she is really depressed and has given up when she was diagnosed with PD. I know moving by dancing, exercise in anyway will help her regain more of herself back, but it will take time.
Please- Please you both need to talk this out and be honest with one another ( don't argue or fight) then make appointment to ask for help for the both of you. It sounds like you still love her but are quite angry, this is understandable. But and that's a big But- If something is broken don't throw it away, work together to come up with a constructive way to help to build your relationship through love, anger, tears and don't be ashamed to ask for help- you both need it.
Unhappily, but understandably, it sounds like you wish (on some level) that she would choose to leave the relationship, thereby giving you another chance at life. It doesn't sound like she is interested in either divorce or suicide and neither are you. That puts you right back in the "for better or for worse" dilemma that nearly all of us face. When I am in a dreadful state, my husband tells me to get on the stationary bike and only five minutes of cycling moves me past the crisis. I have the same reaction to doing ballet Plies even though I had never done a dance move before PD. There seems to be something about moving past inertia that triggers an anti-depressive response. I don't have a clue what might be going on there, but it might be worth a try for YOU to get on the bike or do the ballet moves. Just a thought.
PD's who sit on their butts and don't do everything they can to thank their caregivers, and do their share ... disgust me. So do "Martyrs" who ignore their own feelings and needs and provide support with no "expectations." All these people give PwP's a bad name.
If you don't want to be tied to your marriage vows, maybe you should not have made them in the first place. Sounds to me like you are only concerned with yourself, now that the going is getting rough you want out!
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