For those who care for someone with Parkinson's disease
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By housemouse On 2011.10.01 19:56
My husband was diagnosed in 2004, but I knew something was wrong a few years before that, because his personality changed.

Now it is 2011, and we have moved into "senior living", and he is miserable, depressed and anxious. I think the main problem is that he cannot accept his illness.

He tends to reject all the good advice given to him by the professionals about exercise, socialization, activities, etc. He is isolating himself, and me as well.

I know we have a long road ahead, but his misery and depression is getting to me. I can't really talk to my adult children about this, because they are depending on me to carry the load - both working hard to keep their jobs in a down economy, not to mention the spouses and children happy and occupied.

I feel lonely, forgotten, and without my beloved husband of 45 years, who now has turned into a non-communicative stranger, beset by constant miserable symptoms.

His Parkinson's symptoms are not yet that disabling. It is the autonomic symptoms (heat flushing/restless legs/peripheral neuropathy) and mental symptoms of anxiety and depression that are destroying our lives together.

He is becoming all the more distant and non-communicative in his despair.The anti-depressants prescribed do not seem to help, and I do not know what to do to survive on a daily basis.

I would appreciate any advice.

By lurkingforacure On 2011.10.02 12:15
I'm really sorry, you sound so miserable. We can all relate and understand here. Please come and share how you feel and vent anytime, there are no judgements and we all know what you are going through.

As long as your husband refuses to accept his PD, things will be harder than they could be. As if they aren't hard enough, but acceptance does allow one to move forward and make the best of what is. I don't know that you can help him with acceptance, maybe a counselor or pastor could help if he would go? Barring that, I think, unfortuantely, that he has to accept things when he is ready. Maybe if he realized that his refusal to accept things is having a negative effect on you he might change his outlook. Just a thought.

As far as advice, it's trite, but you have to take care of yourself first and foremost or you are no good to your husband. That includes having friends, getting out, doing things you enjoy. Don't let PD define your existence. Staying with your husband all the time does not sound like it's helping him and it is pulling you down. You need to get out and about, even if just for a little while. Most senior living places have activities-I would check those out and see if any interest you.

I have learned the hard, heart-breaking way that trying to be by my husband's side all the time and putting my needs aside is a lose-lose: it does not help him feel any better, physically or emotionally (although he may be less "lonely" for the hour or so that I am gone), and it pulls me down into an abyss. We have young kids and I have to keep things together for their sake. It's a lot of pressure. I have found that I am really only able to handle things and keep it together if I make time to do some of the things I enjoy. They are small things, like gardening in our backyard, working in my kids' schools, and don't take a ton of time. But the few hours a week make a huge difference in my outlook and coping skills.

I would try that and see if you feel any better. As they say, PD is a family disease, because everyone suffers, although perhaps in different ways. I hope this helps, and welcome to the forum.

By Harriet On 2011.10.02 18:46
Dear Housemouse, I don't know if this will help you but please know that you are not alone in your feelings of being "lonely and forgotten" and living with "a non communicative stranger". I had those exact feelings this past week. After crying and telling my husband of those feelings he felt bad and is trying harder to be there for me but I know it is a temporary fix because my husband doesn't mean to shut me out and can't help what is causing him to be that way.

In an attempt to find some comfort and understanding I went to the commentary section of this forum and read many of the essays there but the one that gave me direction, comfort and peace was called "A Caregiver's Journey" by Georgianna Grant. You could tell that she has gone through that same feeling of lonliness and frustration. I think she is a step ahead of me and is finding her way in a way that I would like to. She made me realize that things are not going to get better and when I give up that expectation and reprogram myself to find joy in a smile from my husband and the small communications we do have I will be a happier person. What I enjoyed most about her article was the love she expressed for her husband that showed in her words. I love my husband beyond all and don't want to become a bitter, angry person. I want to follow Georgiana's lead.

She also talked of her resolution to take care of herself which I agreed with. Instead of me relaying all of her ideas you'll want to go there and read it for yourself.

By the way our situations seem similar--except I've been married to my wonderful husband for 54 years. He was diagnosed in 2003. He is still able to get around pretty well. He has suffered from depression also. Lately his speech has really been affected.

Let us know how you are doing. Even though I'm a stranger to you I send my love and caring. Please know I understand (as do numerous others on this website.)

By fathersdaughter On 2011.10.04 22:57
Hello Housemouse;

Is there any chance that your adult children really want to help but do not want to interfere with your independence?

Parents always worry about their children and want them to do well; is there any chance that your kids are worried about you and your husband - and frustrated that there doesn't seem to be any opening for them to pitch in?

Forgive them for not barging in (but you wouldn't want them to anyway, really) but don't forget that if you don't let them know that you need anything, they (unfortunately) don't have ESP.

As the adult child of a father with PD, I sure would LOVE IT if my mom would confide in me rather than feeling like she couldn't / shouldn't. I honestly do not expect her to shoulder this alone. I just don't want to intrude on the intimate domain that is rightfully hers.

what if you invited their help? would they rise to the occasion?

I would do anything and everything I could. it would not nearly be enough, I know. but I would. anything.

By dear On 2011.10.07 17:27 [Edit]
You are inmy prayers and your thoughts here are so familiar to me. I am new to this forum and seek to learn from those ahead of us. I came here after reaching a crisis in terms of how I can live a balanced life and maintain my loyalty and commitment through the void and agitations with the parkinson's daily struggles. What I have learned from what I read on this forum is that I must readjust my expectations and use this group and the local support group I will join next Friday to sort out and understand this journey. Hang in there and may God bless you.

By housemouse On 2011.10.08 16:57
Thank you all for the support and encouragement. It is helpful to know that I am not the only one struggling with feelings of loneliness when losing my life long best friend, intellectual partner, and soul mate in every way.

I will keep on reading and relying on you all for support.

By housemouse On 2011.10.16 21:53
Well, an update of sorts.

My husband was referred to Mayo Clinic by his Neuro, because he has so many symptoms of Multiple System Atrophy.

Mayo has ruled that out for the moment, but they have admitted him to the psych
unit for a week to ten day to do some genetic testing to see which anti-depressants might work to relieve his major severe depression, and to figure out why he has all the autonomic nervous system symptoms.

Do any of you have a partner who has struggled with this?

Mayo seems to think he is a special case, because they put him ahead of everyone else on the waiting list for a bed on the geriatric psych ward.

I need some info, advice, and support. But, I am ashamed to admit that I am going to enjoy my "days off". His unrelenting depression was beginning to get me down.

By housemouse On 2011.10.21 22:39
My DH couldn't tolerate the psych ward, so checked himself out AMA (against medial advice) yesterday. He was supposed to stay 5 to 7 more days to evaluate changing meds, etc.

He is still sharp enough to get a 1.5 hour shuttle van to an airport near our senior residence, and a cab from there to here. He was at major risk of falling, because he had no walker, no cane, and was carrying two bags.

I told him before he did the mid-day flit, not to do it, that he was letting all of us down for not following through with the prescribed treatment. But, his overwhelming anxiety about losing control over the most minute details of his life took over.

Anyway, the consequent family reaction of worry and panic took over, and we all expressed our disappointment that he hadn't followed through on the treatment plan. We all made it clear that while we were disappointed that he hadn't completed wheat he agreed to do, that it has to be his decision to go back.

To be frank, I came down on him a bit harder, because I have been putting up with his withdrawal into wall-staring depression for about 6 months.

He hates to be forced into "socializing:, whether it is group therapy, group meals, or whatever. All he wants to do is lie on his lift chair, sleep and watch crime shows overnight on tv.

I can't get any of the docs to evaluate him for dementia. They all yammer about treating his depression first. He resists all the "social therapies" they want him to do.

At my wit's end here. The mid-day AMA happened when one son was on a long flight with wife and grands for a long week-end break (I suspect my husband took advantage of that fact)

Mayo has ruled out MSA for the moment, but they refuse to test for dementia until they deal with the severe depression. I understand that, but can't the two coincide?

This panic-driven anxiety escape is just not like the man I used to know.

Has anyone ever had to deal with this kind of situation when dealing with a loved one who is suffering from major depression and anxiety, along with Parkinson's?

In the middle of trying to make contact with my son, who was in the air over the east coast somewhere, the refrigerator went toes-up - when it rains, it pours.

Our daughter and son-in-law drove 17 hours straight to get here, and help me gets him back to the hospital. They are spelling me, for I am totally out of juice, and need a new battery pack, if you get my drift.

Sheesh, what a horrible day!

By karolinakitty On 2011.10.22 13:34
Housemouse...Yes...Dementia and depression can go hand in's hard to test for dementia when a person is in deep depression. Some of the questions asked are month, year, day of the week and those really don't matter so his answers to that type of questioning would be out.
The person with depression, not wanting to be social, does not "spark" the brain and so it doesn't work as it should. I did a series here not long ago, the brain, memory and there too the powers that be at John Hopkins came to the conclusion also that sitting in front of the TV day after day is not good either...people without depression can "veg" on doing that.....If he has "directional" fortitude left, in other words, if he can still find his way home with no trouble, knows his address and can figure out how to get bus, car, taxi....whatever....he probably doesn't have anything more than a short term memory loss due to age....
There is a fine line when crossing over from short term memory loss to isn't just forgetting peoples name and dates..things like that....there are more things involved normally. If you have a chance to breathe while he is back in hospital..reading that series might give you an idea of what more to look of luck......

just a side oldest son deals with depression... and honestly telling him he disappointed me by not going through with something is not worth my breath.....he really wouldn't care....

By packerman On 2011.10.24 10:53
we have dealt with severe depression and now we're dealing with bipolar and PD. thankfully, the meds are effective for both.

By housemouse On 2011.10.24 21:42
The clinic/hospital unit (Mayo) allowed him to come back and finish the therapy, and thinks it is "pseudo-dementia" and an anxiety disorder.

He will be coming home tomorrow or the next day, but will have to continue with psychiatric therapy for his anxiety and depression - in addition to being closely monitored by his neurologist.

LBD hasn't been completely ruled out yet, but the psychiatrist agrees with the neurologist that they can't get a good result until they see if he responds to what they are doing now.

The beat goes on.

By parkinit On 2011.10.30 17:49
housemouse -

Actually, being in a hospital and out of familiar surroundings can make PD-related symptoms much worse. They are out of their element. My spouse lobbied day after day to be released from the hospital while he was in for some post-hospitalization therapy. He made a good case, harrassed the doctors daily, called me and demanded that I come pick him up (I didn't go), until they were tired of hearing from him and released him - yes, early.

It's a catch 22 when they need hospitalization to get the help they need, but the hospitalization may make the anxiety, etc. actually worse.

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