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Topic Is this normal for a caregiver? Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2010.01.07 20:07
I am having a hard time right now and feel very badly that I even feel this way. One of my friends who I have been friends with for ten years now, came over the other day and I have been feeling horrible ever since. I think I am upset that she has such a great life, tons of money, no cares at all in the world, doesn't work and will never need to, has a maid, gardener, etc. etc. etc. We all know folk like this. I realize that we have next to nothing in common (other than the fact that our daughters are the same age but again, hers goes to a private school and mine does not). I see these differences as only becoming more so as this relentless path we are on progresses. I feel very badly about it but am wondering if I need to not see her as much since I feel so horrible when I do. It has gotten worse this year, as the differences in our lives have become more and more glaring.

I don't resent her at all, am just very very sad that the differences in our lives, which have always been there (I've never had a maid, for instance) are now unmistakably in my face. I guess my heretofore coping mechanism of denial is beign eroded away and I cannot ignore it when we get together. Is this normal? It seems that it is usually the friends who leave us high and dry, and I have had that happen already, but this is the other way around.

I need to stay mentally stable and healthy for our kids, and I feel this friendship is jeopardizing that. I have been quite depressed ever since we got together. Or am I being unfair or selfish? I guess I have just never heard of this in our situation and am wondering if it's normal and if so, what to do.

By annwood On 2010.01.07 20:36
I think that it is very normal in your situation to feel resentment. We all wondwer why this has happened to us when others seem to have no problems. There is a tendencey to say we are feeling sorry for ourselves but I don't believe that to be the case. I think instead we are dealing with what seems to be a insurmountable problem that nobody seems to understand.

If this is a true friend that is standing by you great but if you really seem to find her visits uncomfortable I would discontinue them - you have enough on your plate without that. During my husbands illness I had two people that I felt close to and that would listen to me whine. They are still friends but the others are long gone. I accept that they were never true friends in the first place although it hurt at first.

I would say that your reactions are very normal for someone in your situation. I think of you often and wish I could help.

By LOHENGR1N On 2010.01.08 00:12
Lurking, I also believe your reaction is "normal". We all have or had visions of a future and ideas of "down the road" or "in time" we'd attaint a certain level of comfort and ease. Unfortunately the stark reality of Parkinson's Disease stopped those visions and dreams. So yes resentment is normal.

Friendship is a curious thing. With Parkinson's it becomes a rare thing, as Ann said friends disappear over time in the course of the disease. Dropping off like leaves in autumn, scattered in the wind. I'm not too sure I'd end this friendship right now. Sometimes, people in your friends situation are just as uncomfortable living that way as those who aren't as "fortunate" are when seeing all those people have. Money, maids, not wanting for anything are our perception of the life we think we see. Along with those things come a way they are expected to act. A private school with a headmistress or master have protocol expected to be followed. Accepted actions and reactions. A maid would seem nice but I know it would drive me batty to have someone following after me closing a book I left open to the page I stopped reading. Washing a cup I had set down intending to reuse. Maybe She is a friend who enjoys the visits, enjoys your children whopping it up coming in from school. See's the love in your home, a love that maids or drivers, gardeners can't provide or replace.

She is probably a bit dumb struck by your ability to handle and cope with the situation you seemingly to Her handle well with little help. One way to find out if She's a stick by your side friend would be I think bring up to caregiving subject. Not a long in depth description but a couple of rough spots encountered, if She bails then you know. If She stays well then she is a rare treasure. I don't know I'm just trying to put another slant on the subject.

It sounds like you've had a rough day so just take some time to think about it you don't have to take any action tonight. Take care, best of luck and hang in there.

By Emma On 2010.01.08 06:17
Lurking, I do know exactly what you are saying. I too had a friend who was much much better off financially than I was. We were friends for almost 30 years, I was the maid of honor at her wedding. Throughout the years of our friendship I never resented her for her easy life, but after my husband got Parkinson's the contrast between her life and mine started to look pretty stark and I always felt bad after I saw her. I never had to decide what to do about that because she disappeared from my life. I guess my reality was too unpleasant and inconvenient for her. I think that if she had been supportive and stayed around I would have moved past my own feelings, I think it was just part of the grieving process that we all go through when faced with this disease. If she is willing to hang in there with you I don't think I would give up on it yet. Is she someone you can talk to about what you're feeling? You certainly have enough to deal with without voluntarily putting yourself in a situation that drags you down, maybe a temporary break until you see if those feelings change? I sometimes even feel bad around my "normal" friends whose lives are so different than mine, but that's coming from me, not them. I guess you have to weigh the value of the friendship. It's been eye opening, and sometimes very surprising, to me to see which friends have hung in with us and which have not. For me, the friends who have stuck around and are caring and supportive are priceless. I wouldn't want to lose any of them. The others I don't miss at all. Just remember that we, as caregivers, move through "stages" with this disease too. We go through anger, depression, resentment, denial, basically all of the stages of grief. That I think is what is happening to you now.

Take care of yourself, think it through, do what is best for you.

By karolinakitty On 2010.01.08 06:35
I think the one thing that gives us caregivers common ground is the love we have for our pdrs.
As has been said, maybe she sees the love that is so evident with caregivers. We sacrifice a lot of "normal" things to take acre of our LO.
Growing up and living most of my life without a good financial backing. my dear ol gram always said money isn't everything and sometimes those with don't have the love that matters.
Maybe your friend sees what love YOU have and is envious of that endearing "family" love. Maybe her huband is never home because he worke too much, because they are so deep in debt. Ya just don't know. In my life i have found that many friends i had that I thought had so much....were more in debt then i could ever imagine. Maybe she loves coming there to see "real life" it may soothe her and make her feel better.
As others said too.. if she's a real friend she will stick around and if not, she will leave like the rest......
Hang in there, unless she grieves you soooo much, friends are that and we can take them or let them go. relax and try to go with it.....

By lurkingforacure On 2010.01.08 07:48
Thanks to all of you, yes, I can see all of what you are saying, especially in the light of a new, and hopefully better day. Not so emotionally wound up....but still, I think I will put some space between us just because I feel so horrible after we have visited.

I have wondered what in the world we will be able to talk about in six months, a year, two years, heck, even now!, that will not have the same depressing effect on me, and it's bleak. Her topics: kid in private school with all that that brings, good and bad, where they are going to board their dog while they go on a trip, her husband (who has retired at 48 years of age, that's how wealthy they are) driving her crazy making lists of things she needs to get someone to fix around the house (this has already happened)....and then me: haven't slept a solid night's sleep in three years, have mountains of laundry piled up waiting to be done and the kids have nothing to wear for school in the morning, we forgot to timely refill one of hubby's scripts and I have to race to the pharmacy in between everything else to refill it just so he can function, etc. What a difference! Like they say, PD is consuming, and my one hobby/therapy, growing some of our own vegetables, is not something she has any interest (or ability) in whatsoever. I've tried over the years to give her plants, little seedlings, but they all died and I realized not everyone likes to grow things so I quit.

I really don't resent her, though, that is what is odd. I just feel very sad that we are having less and less in common, or I am actually seeing that for the first time, and like I said, it's been heading that way for awhile. I actually told my husband this past summer that I wanted to sort of "divorce" myself from the friendship because our visits were ackward and made me sad, but he recommended I wait it out. I have, but it has not changed.

Probably the wisest, and fairest, thing to do is take a break from the friendship, not that we see each other very often anyway. Brooding over this is prolonging my sadness, and I realize there is next to nothing I can really do about it anyway: it is what it is.

Thanks everyone for your input.

Oh, and you DO help! Just being here and offering an ear and suggestions helps more than you know, actually, everyone here does know what that means. Hugs to you all.

By Newcaregiver On 2010.01.08 14:33
Lurking: I am also thinking about her topics of conversation with you. Underlying those conversations is my feeling that she seems to be awfully insensitive to complain about "where to board the dog" and trivial issues like these when you are dealing with such overwhelming challenges. I think for myself, I would be hurt that she doesn't recognize what you are going through and want to listen to you. I have a relative who is like this. All she can do is brag about how great her life is and it depresses me after she has visited. I decided that what bothers me is not that she has these things - I am happy she does! And, not that I don't have these things, but it depresses me that I feel that she is almost using me to feel better about her life. To contrast her "better" life against my problems. does that make sense?

By Mary On 2010.01.08 16:51
lurkingforacure, my spin on this friendship is that as a caregiver you have absolutely no free time and you if you make free time for a visit, then you have to do double time later. So, I would be very, very picky about how I spend that free time and only do so in a way that will make me happy! So there! Maybe later in life you'll be ready to hang out with this friend again but for now, I think you don't have the energy to be her friend. That's my take on things anyway. Hugs and blessings, Mary

By lurkingforacure On 2010.01.08 17:55
Yes, I have thought of that...at the same time, if I were to view this whole thing benevolently, I wonder what I would do if our situations were reversed and her husband ill with PD. Would I know how to talk to her? What would I talk about? I wonder if she just doesn't know what to say so all of this trivial stuff comes out to fill the conversation.

On the flipside, we've been friends for ten plus years, most friendships that have survived that long have moved to the point of being able to pretty much ask and talk about anything. I also think there may be a part of her that feels too guilty to bail on me, so she's sticking the friendship out, which so far has not been different because I don't dump my PD woes on anyone outside of this forum, most folks cannot handle it. As far as she is concerned, nothing has really changed in our friendship because when we do get together it's like it always has been, for her. I haven't even asked her to help in any way, ever.

...and, as much as I hate to admit it, I think I also may be a topic of conversation for her in other social circles, I am "the poor friend whose husband has PD and they have those poor young kids", which ticks me off. And makes me sad. I feel betrayed as well as used.

You are all right and yes, there is never enough time. I barely was able to squeeze in the visit this last go round. I think I'll be too busy to get together in the forseeable future and see if that helps. Thanks all for your input. It's nice to know I'm not a psycho for feeling as I do.

By mylove On 2010.01.08 18:15
No, you're not crazy. And I'll toss in one last thought, for what it's worth.

Evaluate this interaction as if the caregiver factor does not even exist. Would you still feel as if your situations were miles away, so much as to make it difficult to relate to each other's lives? That, in and of itself, is a telling evaluation.

There's a group of people like your friend here at my place of employment. They are all wonderful people, but their lives move in circles very like your friend. Their topics of conversation and daily dilemma range from what kind of new boat to buy to where they are going on vacation *this* time. It's not that they rub our noses in the fact that we are living a different sort of lifestyle, it's more that their priorities and points of relation are so different from ours that we find it hard to find common ground. I tend to make our interactions fairly short and sweet. I love my life and would not change it, and need no encouragement to find envy in someone else's life.

The bottom line is, no matter how well meaning the parties, nor how much someone wants to make a friendship work, if it takes more energy to maintain a relationship than you are receiving from it... well, that's its own answer in itself, right? Like a 'no-fault' divorce, it sounds like you were two different people in two different circles to begin with, and now your circles are drifting even further apart. Don't be hard on yourself for needing to cut the exhausting things out of your life wherever you can. You are doing such a great job as it is - believe it!

By lynn On 2010.01.08 20:07
I have read that it is normal for friendships to run their course. I do not believe that you are resentful of your friends life. I think being a caregiver for a spouse with PD makes you see life differently and what may have mattered before is now nonsense and shallow. When you feel bad after a visit with a friend, it's time to minimize your contact. Your free time is precious and your friend should be giving you a diversion from your situation. I have a so-called friend who goes on about her travels and such. It comes across to me as though she wants to be one up on me. Well maybe her life is better than mine but I've decided I don't feel good when I'm with her and it's time to move on. I know caregiving sucks; that's a fact but I do know that it is the greatest gift of love and pure devotion that one can give.

By arlenecram On 2010.01.09 22:14
I can see big changes in our friendships with friends. Things are just not the same anymore. We have had to draw back from most things---except family functions because it is just too hard on my huband to go places. I don't feel resentment but definetly a ense of loss and loneliness.

I also would like to ask a question.. Lately I have noticed a huge increase in the amount that my husband eats. He snacks constantly. At the last two family functions he sat at the buffet table and ate until I wondered how he could eat anymore. Tonight we were at a birthday party and he did the same thing. It is a little embarassing---and someone commented on it to me. It this something others have experienced? Should I be concerned??

By LOHENGR1N On 2010.01.10 00:29
Sometimes our caloric intake increases (you can insert We snack a lot) as it takes more energy for us to function. Remember the tremors use energy, stiffness uses more energy to move. Dyskinesia or involuntary movements use up energy, as the disease progresses everything we do seems to slow down, however it is taking us more energy to do these things and as we extend extra effort to function at a semi-normal level we're burning more calories in the process. That said it isn't an excuse to gain 100 lbs, barring any tape worms (just kidding) a couple of boxes of twinkies around isn't too bad! Unless He's gaining a lot of weight I myself wouldn't worry.

Living with Parkinson's Disease has been likened to doing moderate exercise, so as it progresses this level of exertion increases. Which in warm to hot weather is why We have to keep an eye on hydration. (keep in mind this moderate exercise is constant all day long for us which in hot weather also makes it hard when they have those alerts of if you exercise do it in the morning or evening when the temp is lower!?!). When you consider this I don't think you need be embarrassed at all, in fact I'd challenge those commenting to try and do the same and see how much they'd eat. Take care, best of luck and hang in there.

By shirley On 2010.01.10 14:44
My husband's appetite is still quite hardy but he has steadily lost weight for the last 18 months. I realized early on that he was using up more calories than he was taking in so I let him eat whatever he wants. He has dessert after every meal plus snacks throughout the day. Now if I could just not be tempted to take a little bite of this or that, we would be fine!

By tfmayka On 2010.01.10 16:05
Dear Lurking,
Your dilemma is a tough one - I had a similar situation years ago when I was going through some really hard times, and after hanging up from a phone conversation with the friend of over twenty years and crying my heart out over the content of the conversation and her complete inability to relate, I decided to let it just drift away. And except for a few years of Christmas cards, it drifted. And I have no longer had to deal with my own negative feelings and thoughts.

People change, lives change, our situations change. We have to live our own lives. And it is not wrong to do so. Ourselves, our families and our choices are the things we have to live with, and we do what we can to bring in those beyond our boundaries to enhance our lives through friendship. But when those relationships cause us to be so very unhappy, it is necessary to pull in the boundaries and protect the home front and our own hearts.

Be at peace with your choices, you are the one who lives with the outcome. Do not feel guilty, it serves no purpose and hurts only you.

But if the friend persists in wanting to be a friend, offer her some opportunities to be a helping friend - ask her if she could give you some respite to do errands, or just some time off to go out for a cup of coffee on your own. That would be a true friendship!

Blessings, Terrie

By dkleinert On 2010.01.11 01:19
lurkingforacure: Dear one....you are so not alone - and you are totally normal. This has happened to me as well. As it turns out, the social friends we had are all gone. Because we can't make time any longer to fit into their social events calenders on weekend 'cause I work, to take off for a week or two to go on vacation with them, to go over on weekends to play cards....on and on. When I got my 2nd job that I had to take to make ends meet - I work evenings on Thurs, Fri, Sat and Sun's - I thought I would never hear the end of the sad whining this particular friend filled our conversations with - "when will you quit that awful job that takes you away on weekends so we can........" or she would call about once a month and say "have you gotten a different schedule yet so we can......." She then said she was insisting that we have dinner and play cards at each other's homes every 1st Friday of each month. I had to again mention that I worked on Friday nights.....again the taunting. We also had another couple of friends who were old enough to be retired young. They, too, are wealthy, and all they could ever talk about when we were together was their next cruise or next long trip or how many trips they had made that year - why didn't we come along with them - take a weekend off (even though I reminded them I worked weekends) and come to their beach house - them saying it would be so good for my PD husband if I would do that for him.....on and on. When I asked if maybe they could take my husband with them to the beach house some weekend - they said quickly that it would be so much more fun if I was there, so we should wait until a time when I could come along too!! You should have seen the fear in their eyes when I suggested they take Joe with them without me......it was (secretly for me) funny!! They always said I could come over to "vent" at their house, and one time I actually did a couple of years ago. They were gracious, listened, told me to come back anytime.....then I never heard from them again. So I wrote an email inquiring about how they were, and didn't get an answer. Then I found out they gave a huge birthday party for the husband and didn't invite us. That was the end of that - I was sad - as you describe, but I finally saw it for what it was.

So, I have learned, as others have mentioned here - you will find out who your REAL friends truly are. They will mean it when they ask if they can help you, they will be there to help you, they will listen - they will cry with you and be happy with you. It will not be a one way street.....I feel your pain. It is a lonely road - the PD Caregiver role - but in the end, as I am learning - the reward is in the smile on your PD loved ones face as it shines thru to you one moment when you catch it, in the knowing you have made life for your PD LO better today than it could have been any other way. Caring for a PD LO is a truly unconditional love relationship. You are very SPECIAL. If your friends can't see that and don't want to be there for you because of it - they are not your friends.

WE HERE ARE YOUR FRIENDS! Hugs and Love to you!!

By kutty1 On 2010.01.20 04:13
hi
iam new to the forum.i have parkinsons disease.iam 44.like to spend some time on the forum.seems to be very informative

By LOHENGR1N On 2010.01.20 08:33
kutty1, Hi and welcome to the forum. Great group of people here willing to help if we can. Nice to meet you and again welcome.

By annwood On 2010.01.21 20:55
Hi, Kutty1
Welcome to our forum. We so appreciate imput from those who have PD. You provide the insight we often don't have.

By kutty1 On 2010.02.01 03:30
hi
it is nice to know that we are welcome and being a doctor kind of helps to gain more insight to the problem.loneliness is the main problem and i hope this forum can solve the problem.

By annwood On 2010.02.01 10:21
Let me also welcome you to our forum. It is a great group of people. Ask or say anything - no judgements made here. I can honestly say without this group I would have had a much rougher time with my husband's illness. We really value imput from PD'rs. It gives us insight we otherwise would not have.

By kutty1 On 2010.02.02 03:19
hi
i wish i could say a hundred things.but cannot.about my PD.the OCD.
hey life goes on.PD and its medications are the worst combination a person can have.

By Reflection On 2010.02.02 08:47
Dear Kutty1 - take hope, and take control. I see you are a doctor. The PD is something you have to accept. The OCD is NOT. It is - usually - a medication side effect. My loved one had horrible compulsions, very uncharacteristic behavior on the dopamine agonists. That was six years ago. He's off them, and the OCD is greatly reduced. Not entirely eliminated - for some, the compulsions continue even after stopping the medications - but much easier to live with. His physical state is a bit worse over the six years - but not enough to cause a major change in how he lives. From the perspective of a loved one, the OCD, anger & agitation, lying, etc. while on the dopamine agonists were much worse than the PD, and much more destructive to our family. While we were in that time, I would have thought it was not something we could significantly change. In retrospect, a lot of harm that was not necessary was done - because it was not necessary to accept the OCD as the price of controlling the movement issues. Good luck. I hear your desperation, and I believe things can truly be better for you.


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