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Topic Friends: dump the chaff, nurture the rest Go to previous topic Go to next topic Go to higher level

By lurkingforacure On 2009.06.24 15:13
Several have mentioned friends who bail, and friends who appear when unexpected, from unexpected places. Only three years into this, I know this is true, sadly, but true.

I recently finished (a very quick read, thank goodness) the book "The Power of Two", co-written by husband and wife, the husband was dx'd with stage 4 brain cancer (there is no stage 5....) and it tells of their journey, all the medical teams, experimental treatments, and emotional ordeal they went through. The husband is ten years out and doing great although he has aphasia (can't remember words, reading is also very slow and difficult) but he is ALIVE when all gave him months to live. So it's a positive story, and I got it because it is told from both perspectives, his as a patient, and hers as caregiver.

One of the things I got from her writings as caregiver was that friends will leave you, often say horrible things, and it is very hurtful at a time when you are already raw, emotionally drained, and empty. Her advice? Move onward and leave them in your dust. The other choice is to agonize over the lost friendship, which only puts more stress and strain on you as caregiver. Moving forward also allows you to make new friends, friends who will be there for you when you really need them, not when it's fun, convenient, or popular.

Another thing I got out of it is just how aggressive you have to be in getting the best care for your loved one. Everyone makes mistakes in the medical field, and she felt it was her job to make sure none of those mistakes happened to HER husband on her watch! A great perspective, I think.

On one occasion, she and her husband yanked out the IV that had been incorrectly given and fled the hospital, without even bothering to notify the nurses! Her instructions on how much much of the IV drug her husband could tolerate had apparently been ignored, and the hospital was pumping him full of the stuff, so they took off. I wonder if I would have the nerve to do that!

It was very informative and inspirational to read, she stood up to doctors and questioned their recommendations, nicely, but she did it. There were a lot of examples of how she was able to get the best care possible for her husband. Of course, having lots of money helps, and she admitted as much in her book, but still. She educated herself on cancer, the options, the latest research and experiemental treatments, so that she could be the best advocate for her husband that she could be. I particularly liked that idea, that I am really more of an advocate for my husband at this point, than caregiver, since he can still do most things himself. But I really liked her advice about the friends, and from what she indicates in her book, they fled just like we all have experienced. Apparently having lots of money, and a very distinguished career, do not make a difference in that regard.

By annwood On 2009.06.24 17:18
I didn't agnonize over the loss of those "friends". They were never friends in the first place. I would guess that money and social status might make it even worse since there are pleanty of phony people in that group. To this day those friends will come up to me to tell me how sorry they were about my husband's death. This is where the fun begins. A comment like "Oh, really" or "Are you aware that this was 18 months ago". I enjoy making them uncomfortable but I certainly don't go out of my way to do this. I just don't have time for them.

Perhaps one of the good things that happens in the tragedy of PD is the recognition and appreciation of good friends.

By lurkingforacure On 2009.06.24 19:07
Annwood, I have to say, I sure do like your sense of humour!

By annwood On 2009.06.24 19:29
Yours is not bad either. We have to be able to laugh and see just how absurd some things are.

By Mary On 2009.06.25 10:24
Well, I am certainly going to add that book to my list of books I hope to have time to read one day.

I don't have trouble with friends disappointing me. I have trouble with my siblings disappointing me and, more importantly, Dad.

By WitsEnd On 2009.06.25 11:57
What I finally learned to get over are the people who say "oh, if you ever need anything call me"....but if you actually take them up on it they are busy or can't or have every excuse under the sun. After a couple of calls you figure out that phrase is just conversation filler like "nice weather we're having".

I found out about the good people too though. When I had to go get mom and dad and bring them out to Texas from Alabama, three friends went with me. One drove dad's truck with dad and the dog, one drove a rental truck with the furniture and boxes and arranged for paramedic friends to help unload the moving van (and mom) when we arrived, and one drove her van with mom (who was paralyzed) and me. When somebody gives up vacation time at work and goes through something like that with you--you know they are the real deal.

They also made for some good memories too on what could have been a really miserable trip. We were kidding about kids wanting to know if "we were there yet?" and I'll never forget mom joining in with game over the walkie talkies. People probably had a good laugh when our little caravan hit the drive through!

By annwood On 2009.06.25 12:13
I think we are fortunate to know who the true friends are. You are correct not many fair weather friends would do that. Many people go through life thinking they have all of these friends - I always thought a lot of my husband's friends were phoney but he would say no, they are good people. He was wrong. I treasure the true friends that were there for us.

By WitsEnd On 2009.06.25 14:30
Men should NEVER under estimate woman's instinct!

By lostdaughter On 2009.06.25 20:02
It's very disappointing when we first start to realize certain family & friends aren't who we thought but the realization has become a blessing in my life. I've felt angry, resentful, foolish, etc. for not realizing sooner that certain relationships weren't what I thought they were. At the same time, my situation has brought out the best in a few people who have stepped up & shown they truly cared. I hope to one day repay those few for the caring things they've done.

I have one cousin who depended on Mom to do 75% of what needed to be done for her own mom when cousin needed help. Now that cousin doesn't need anything we never hear from her. Mom tried to stay in touch for a long time but her calls were never returned. Cousin doesn't work now but she doesn't have time to even pick up the phone and call Mom, let alone offer to help do anything. If there's an occasion in her immediate family where gifts are involved she still sends invitations. I don't even bother to RSVP anymore. The day will come that she'll need something. I hope I'll be able to calmly tell her exactly what I think of her & end the conversation gracefully.

I'm normally not a very positive person but I have been able to look at the positive side of realizing who my true friends are. Those of us in caregiving situations have little time for things we enjoy. We certainly don't need to waste any of that time on people who aren't really our friends.

By lynn On 2009.06.25 20:53
One of my "friends" tells me all about the plans she and her husband have made. Whether it's going out to dinner or traveling out of the country. She knows that we're not able to go much anymore. I do think it's shallow and insensitive.

By lostdaughter On 2009.06.25 22:37
I think a lot of people simply can't empathize or truly understand because their lives have never been turned upside down by anything like PD or some other illness or disease. I can recall times when I listened and felt sorry for people I knew who had been affected by such but I had no real understanding about how their situation had changed their life. I think that's changed now that I have trouble finding time to take care of simple things like shop for groceries or mow the lawn. I have first hand knowledge of how profoundly not only the patient's life is changed but the lives of those who care for them.


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