I have always considered myself upbeat and easy going kinda girl...even through 42 years of marriage and raising three children...but lately I seem very angry all of the time. I was diagnosed with PD in December 2005 at the age of 55 and all considered I do believe that I have handled it well...until now. My husband is my "Go To Person" we spend most of our time together though he does still work outside of the home 30~35 hours a week...and I can go for weeks at a time not seeing anyone else. We live in a rural area but too I have come to feel that people, including our children, don't want to see me in the state that I'm in...not able to do so many of the things that I use to do. That upsets me, but I am not angry..I do understand.
The anger that I speak of is with my husband...he seems to have found that "last nerve" of mine to get onto and things don't seem to be getting any better. I feel bad after I have gotten upset with him and he says that he understands. I do alot of self talk trying to not get upset, but it's not working very well. The real issue is that I get so frustrated when the hubby does for me without my asking...he has a good heart but he has taken on knowing what I want & need...his deciding what is best for me...now that he does most of the cooking he has my kitchen upside down & backwards...the laundry is a mess...but I can't say anything...if I do the big storm rols in and we both get upset.he knows how I feel <when I am at the dr. the hubby will conterdict what I am telling my dr.> decides when I go out and where...if he had his way he would rather I be sitting in the same spot when he gets home as I was when he left the house! I have lost all control of my own life and this is so not where I want to be!
People keep telling me how lucky I am to have such a wonderful man who cares so much for me and I do love and appreciate him...but I feel we are in this parent/child relationship and yes it has me feeling horrid. I don't know how to deal with the anger...I have tried saying nothing when something is bothering me...but that is not me...in the past he & I could always talk. Ha anyone else gone through this?????? Any helpful advice would be so appreciated.....Casey in NH
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I have PSP and have just about survived a move from an upstairs apartment to a ground floor one in th e same building
I unlike u have a new partner (i am 66 He is 68) but the move has been v traumatic and we have had the bathroom done out ( itnismFANTASTIC) but r still unable to move in as the boxes r right up to the 12 foot high ceiling.
We cannot find anything and I am falling badly into things.
My partner wants to look after me but when I do sit down he thinks I should be doing something to help and v versa when I fall because IAm trying to carry an sumptuous cup, say, he gets v annoyed with me
Chicken and egg?A.
So your husband is,a good man but probably has difficulty dealing with the changed u?
It sounds more like you are frustrated all of the time. Parkinsons changes who we are. I don't like monitoring who I am today and wondering who I will be in the future. I don't like how Parkinsons dominates everything. I don't like feeling handicapped. It's all about frustration.
Yesi t has so much to do with being frustrated...but the angry outburst follow when people tell me what I feel and or if I am wrong...questioning my feelings...concerns and response to different situations. All of my buttons get pushed and as hard as I try to handle these situations push comes to shove and I am finding mysel in an angry spot only than to be told that I have no right to be angry. If I had room here I would give you examples but there are so many to choose from.
Hey Casey, first of all you are very lucky. And so is your husband. He obviously cherishes you, and you in turn love him enough to seek help for your intensified emotions and frustrations.
So maybe take a big breath and say to him what you wrote here.
For many of us anger is very yard to accept in ourselves and even harder to express in a positive fashion.
I believe that there are aspects of PD not yet understood that affects and changes our personality. I have become far more empathic and tolerant in some aspects. However I find I am fearless when it comes to confrontation and asserting myself with certain people--i.e., the Troll I once called husband--
Another thing to consider, and this goes for men and women, as we age the levels of our hormones change--women experience an increase testosterone, and men experience a decrease--hence we see role reversals in couples who have been partners for a long time.
You recognize that your long-loved husband's behavior and actions are without malice and are done in the name of love. Remember this, remind him of this, and then tell him you are frustrated. Start the conversation with a positive statement and end it in the same fashion. In the middle let him know in order to live with pd, you have to do things yourself--both physical things as well as decision making.
Thank you for your kind thoughtful words. We (hubby & I) know that we are both trying to best handle this thing called PD and all of the adjustments...that is without a doubt a big saving grace. I will put into action some of your suggestions especially the "gentle"reminder that I still need to make some decisions myself and do for myself....Again, thank you...
Sometimes anger can be useful - if directed at the right person, at the right time and expressed in the right way, that anger may spur you on to act in ways that at other times you may not have the impetus or energy for.
When we are angry with someone, and I am thinking of cases here where the person we are angry with has no or little knowledge or understanding of our anger towards them, then we can feel that we are in some way punishing them for their misdeeds by directing our anger towards them.
However such anger may fester and grow with frustration and the only person who is really affected by this anger is you. Anger is a bad feeling and it is your feeling, it is you who is affected by it. So, in such circumstances it is imperative that you just let that anger go.It is doing nothing useful and you are being harmed by it so just let it go. Just allow yourself freedom from these domineering feelings and direct your thoughts in some other way. Just let that anger go and you will feel so much better for it.
Control it or this is another part of your life that controls you rather than you being in charge as you once were before PD. Just let it go, just relax and let it go!
Thank you for your most informative comments....I so don't like being angry especially with those that I love dearly and who mean well. I think that I get the angriest at myself after a blow~up because I have been trying to take a deep breath and think through my response in a situation...and then I blow me cork anyway...like I ave no control. This blog is such a learning format and I appreciate everyone's input...thank ou again....
Casey perhaps you should thinkl what your life would be like if your husband had terminal cancer - mine had and he died in February leaving me and my 18yr old son - if I thought life was bad before its now unbearable
First and formost I am sorry to hear about your husband and what you and your son have gone though...it must be so very difficult. I have started to think about if it were my husband and not myself with PD how things would be..truly it is to be thought of and considered. We come from different emotional make~ups...even with the common cold my hubby wants to be left alone no fuss no bother...he has not been to a dr. since the day he got out of the Army in 1972...but he is very thoughtful of my medical care. The frustration that comes is that he has taken over my life & making changes or makes decisions for me without our discussing it and I feel like I have lost myself. I will lok at things...as you suggest...from another prospective and I thank you for your sharing your thoughts with me...Casey
After 12 years of PD, 48 years of marriage and 68 years of life, I'm still amazed how we are forced to accept and deal with life changes. In the last 20 years my wife has been through 3 bouts of life-threatening cancers. In spite of all this I am inspired by a 18 year old child, daughter of a very good friend, who has been blind from birth. She is adament in declaring " I m not disabled". She has been mainstreamed in a sighted world in which she is as normal as every body else. She demonstrates rare wisdom at a young age.
How do I thank you for sharing such an inspiring life event....she must be a beautiful girl and with such a good heart. Life changes...learning experiences...accept what is and running with it!! I am inspired from your words of this young woman and your own details shared of what you have had to experience....Thank you.....
Hi Casey, As a caregiver myself for my hubby I was wondering if maybe you should ask your husband if he needs more free time away from you. I understand he is working part time but maybe the reason he is being so controling is that he needs a break. I at times wish my husband would do the things that require my help at a more convient time for me. I have not told him this because I feel he does these things when HE feels good enough and has the strength to do them. So I try to not be upset and to remember this. If your husband is deciding everything for you it sounds to me like he is making it as convient for himself as he can.
You do need to talk to him about this. I know it is going to be hard. I try to not say things like, " you make me feel like..... " or say something that makes it sound like his fault. I try to say," I feel this way,...... Maybe if you start with something like. "I NEED more freedom to do things when I can and feel my body can." You might want to try to stay away from comments that sound like he is at fault or doing things wrong. He might take it as though you are not appreciative of all he does.
You might even suggest that y'all get someone to come into your home to help you instead of him. This way you will be in control again over this person as to how much help you need.
Also if you mention doing things for yourself keeps you going not only mentally but also physically. It has been proven for PWP. (I hope PWP means People With Parkinson's not to sure of the abbriviations) If he does not understand your requests then I think you just have to put your foot down and really start to say no to him when he wants to help you and you feel you can do it.
I hope this helps Casey. May Our Lord help you both and keep you strong!
TO: imbanna....I so appreciate your message and kind words. I can't speak for others but I do believe many of us with PD try to look at any given situation of our caregiver & realize how difficult it must be to deal with us on a day to day bases...especially when it is a love one that we have shared a very different relationship with for many years. I know I do. I get upset with myself when I know that I have disappointed someone or plans change etc. I have suggested to my hubby that he spend some time doing things or himself...but for the many years we've been together we hav always done very thing together...and well teaching that "ole' dog" new tricks is tough LOL!!! I have talked to one of our sons about spending more time with his Dad outside the home and that seems to be falling into place...or Dad isn't bucking the idea anyway! Getting someone to come into the home has been tried...for the most part she was being paid to wach the soap opera's on tv with me...I guess I am just too social <smile> so that idea was scratched. I do undertand that it is a two way street...the hubby and I...and I am thankful that we are in this together...we keep telling ourselves If the Lord brings us to this He will bring us through it...Thank you for your response...Casey in NH
When I was young I spent my college summers working at a camp for the physically handicapped. We had a lot to learn before the campers arrived so we were there a wk earlier. One of the most important things we learned was to be aware of our tone of voice so we didn't speak to them as if they were children or not as good as were. Sure enough I found myself talking to some of the campers in wheel chairs as if they were children Now I find some people change their tone of voice when speaking to me.
Another thing we learned was to let the campers attempt anything they try to do. Leave them alone and give them a chance to succeed. If they ask for help give it.Every little thing can be a great accomplishment as things get worse. I will struggle to hook a necklace, and someone will run over to me and do it. I tell them thank you but I would like to try and see if I can still do it myself. I understand what they were trying to teach us now. I am walking in their shoes so it is easier to grasp.
People who love us want to help. They don't know how to do it or approach it or how often they should be there for us. I sat down with my husband and told him how much I loved him and appreicate him. THen I shared how dificult it is for me to see my abilities to care for myself or do things slowly leave my body. I told him I want to try to hold onto those abilities as long as I can. And I will ask for his help when I need it.
It has been wonderful. Some times I will sit for fifteen mins. struggling with a buckle on my shoe. My husband will look at me and smile from behind a newspaper......I will say "NOT YET", I AM GOING TO GET THIS". and we laugh. Try it.......we are enjoying these moments now....its a game...and I want to win....and my husband wants me to win also. We cheer when I get my shoes on. Who would have thought somehting so simple could be so exciting?
Thank you so much for sharing <3 I hear you and do understand the relationship and understanding how others may eel and see a given situation. My situation with my husband is he is not giving me the chance to try to do things or myself and bless his heart he is a sweet wonderful man...I feel like a child sometimes sneaking to try to do something on my own...to fold laundry...take the do out etc. My children...ages 36, 38 and 44 have not been able to accept the changes with me and don't want to see to accept things as they are & so it makes it very difficult. It is something that we all need to adjust to I suppose...It has come to a point that I want to sit down with everyone and say...this is how it is and I am facing it...I'm not sure that will happen though. Again thank you for sharing and I will look for your future post here on our blog...it sounds like you have alot of positive thought and energy to share and I for one love it!!!! Casey in NH
I wonder how your going and if you have had the family talk ! Sounds a really good strategy.
I have just had a quick read here so i may have missed it but just to mention that anger and depression can go hand in hand. I'm not saying you have depression at all but as the chemical balance in our brain is affected we are trying to cope on insufficent dopamine and sometimes a very low dose med can give us the extra boost to get through. It wont change the situation but maybe can give the extra strength to deal with it. Just a thought and i hope you are not offended by my writing it.
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