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By HangingOn On 2014.07.27 09:33
Was hesitant to post this fearing being misunderstood or thought of as a terrible caregiver.
I feel like I have no life except to be his hired help. He does not need too much help, he still does hobbies and tasks. He does not drive.
If we do have a conversation and I add to it he claims I am making it about me. Just a simple discussion about weather can turn into something ugly. He just crosses his arms and gets a scowl on his face.
I have always pampered him and others say that is why I am where I am now.
I drive him where ever he wants, sometimes having to drop everything I am doing to accommodate his request. Taking him on long trips to see family, but I want to go see my family/friends he says no!
I am not sure what I am expecting with this post, but maybe others are going through this.
What I do know is that I feel very alone.~Nancy

By LOHENGR1N On 2014.07.27 12:12
Nancy, I think you mentioned before that you go to a support group? Maybe you could ask whomever is in charge to plan one discussing grief and the stages of grief? We patients and caregivers deal with this constantly. It is not just at diagnosis, throughout the disease as we lose ground it pops it's ugly head up over and over again. Learning to recognize it and it's effects doesn't cure all but it helps Us to get through rough patches.

If you have always pampered him well it is what it is and you'll both somehow have to find a way to work through that aspect, don't beat yourself up over it what was done may now have to not be done out of love so He can remain and retain as much independence as possible for as long as possible. You're not alone with this issue it is a thin line between helping too much and not helping enough. If one hovers the patient will come to resent it at times in the course of this journey. For example I can't tell you how many times I've read a caregiver saying they have to watch a Parkie like a hawk meaning correcting or making sure they don't try something the caregiver fears they will (watch means look at or observe not take over the task verbally or physically) the old "sometimes they act like a two year old!" What happens? The Parkie waits till the caregiver is distracted, busy elsewhere goes out to do it their way falls and skins their knee ...just like a two year old. It's a balancing act and as no two cases of Parkinson's are just alike neither are compromises or solutions We learn them along the way.

Again you're not alone, grief happens over and over learning to recognize it does help. Your husband is sick and sounds like he doesn't recognize the grief and how to get through it. He's sick, how dare you want to discuss the weather? What kind of person doesn't drop everything to rush to the aid of a sick person like him because he can't reach the remote!?! Unrealistic demands because He has this disease that you can't take two of something and in the morning feel fine. Frustration at the how's and whys being misplaced and directed at the closest person handy...His love of his life. To guess I'd say tackle dealing with grief recognizing the stages and how to work through them. We're all in the same boat here clinging by our fingernails so as not to sink. Please don't hesitate to post, misunderstandings are quickly rectified here (we may squabble at times but bottom line we've all got each others back). Hope this helps some, best of luck and hang in there

By HangingOn On 2014.07.27 12:38
Thank you. My hubby is still very active for the most part. He builds furniture, small tables and shelves. Even though lately I have noticed it takes him longer and the quality is not the same. So sometimes it is hard to wrap my head around the other symptoms, because he is still doing that. Someone said I need to choose my battles, but when you don't know how he will interpret what you are saying you don't always know it is going to be a battle. We do have a support group and I will make the suggestions you mentioned. I appreciate the support.

By makrivah On 2014.07.27 12:43
I struggle with coping as well. Al once again hit the nail on the head in that grieving our PD related losses is cyclical and never ending. I found an article that helped me understand how grieving a progressive illness lasting years is not linear. I hope folks here find this helpful.

http://www.cno.parkinson.ca/atf/cf/%7B7ED31649-7286-42CC-B7D1-9743D23563F0%7D/Caregiving%20Grieving%20and%20loss.pdf

By HangingOn On 2014.07.27 14:00
Thank you. This may sound crazy but I never thought of it as grieving. But this makes sense and I appreciate you opening my eyes.
I appreciate the feedback and support from the website.

By carman96 On 2014.07.27 14:12
Al mentioned watching our PWP like a hawk. That's me. Okay, so he skins his knee, so what? A two year old will eventually learn to not do that. Not so my husband. He does the same dumb things over and over. Of course I'm not worried about a skinned knee. I'm worried about him having to go to the hospital.
One time I caught him trying to put a knife into a plugged in extension cord! He had no reason for it but if I hadn't seen him, then what? He's always trying to do dangerous things.
So yeah, that's stressful.

By carman96 On 2014.07.27 14:16
Makrivah, thanks for posting that. It is good to read these kinds of articles

By VioletV On 2014.07.27 14:46
Nancy,
I have a thought.

I know that PD affects a person's ability to manage body and emotions, and that your PWP may be releasing fear and loss and frustration on you. I certainly experience that with my husband, who, in spirit, is lovely and supportive. But at times he can seem astonishingly selfish -- tho I guess I mean self-absorbed. Not mean exactly, but just heedless of my needs, my sadness, my exhaustion, MY sense of loss.

I have learned that I have to let go of almost any expectation that I can get much in the way of emotional support (at least on my timetable--in response to my needs in the moment) from him. I have also learned that I DO deserve that support--and to take it. To walk away, to say "I just need to go upstairs for a minute..." and to do that, to take a moment in the bathroom, 10 minutes on the computer reading this forum or writing a quick email to grandchildren or friends, or 30 minutes reading a book. And to say "yes, I know I wasn't here. But I came back as soon as I could..." and step back from the reaction.

I've always said in my professional life to clients and colleagues that we can only give what we have with an open heart, and then to give ourselves permission to be fallible and limited humans. I think that applies here too. If we are in this for the long haul we have to give what we can, freely and gladly, and to stop, to get help, to say no when no is the real answer.

VV

By dans316 On 2014.07.27 15:58
Carman,

I also watch June like a hawk. With her Osteoporosis, a fall could be devastating. The other night while getting her ready for bed, I turned my back for only an instant and she got up from the bed and was headed into the bathroom. She can walk a few steps if she has something to hold onto, but I prefer to be that something.

By LOHENGR1N On 2014.07.27 16:12
I mentioned above the "watching like a hawk" not to say no one should, there are mitigating factors like dementia or osteoporosis where more supervision is needed. I was saying that when functioning is pretty high, balance is somewhat there we don't need to supervise as closely.

While I'm thinking about it Dans, you asked about others having bone density tests for their PWP? Sinemet can deplete our calcium teeth and bones.

By HangingOn On 2014.07.27 17:08
Thank you all for the supportive words. I try not to watch him too much. When working I would call occasionally, granted if he didn't answer after many tries, home phone and cell...then I would get worried. But for the most part he would answer. Being at home I tend not to check on him often, but I do check on him under the pretense that it is time for his meds. Thank you again.

By dans316 On 2014.07.27 19:57
Al,
Women have a 4 to 1 edge in contracting Osteoporosis. Given that it seems PD affects more men than women, maybe it's about the same chance for men or women with PD?? June started taking Advair for her COPD in 2003, and had her first hip fracture in 2005. She had her first Dexa Scan in the follow up care for the fracture and was diagnosed with Osteoporosis. Advair is another medicine that can cause bone loss. Combine these medicines with reduced exercise by PWP and it would seem a Dexa Scan would be called for???

By Michele On 2014.07.28 01:43
I've had a rough weekend, feeling like I have no life except work and taking care of my Dad. Please don't get me wrong I love my Dad and do what i can out of love and respect for him. Sometimes I am just overwhelmed. Someone stays with him 8 hours a day mon-fri. After work I go to his house (I live next door) my husband and 13 year old come over and eat supper. I stay there overnight get up at 6 am walk home and get ready for work. The weekends are mine 24/7. I miss my husband and son. My stepmother is at her daughters dying of cancer, she has been my best friend for 20 something years. I'm just on a very major pity party!! Sorry.

By HangingOn On 2014.07.28 09:41
Michele, I totally understand. It is hard to express that without feeling terrible sometimes. I have found this site lets you express all feelings without being judged or feeling terrible. I have had a rough time lately and found comfort in the support here.

By Dazedandconfuse On 2014.07.28 21:59
I read this forum daily. Hang on Hanging...and you are not alone. I just discovered this website a couple of weeks ago and frankly it's been a real life line. I'm still trying to find the balance myself too. Everyone here has been so helpful and understanding. I'm glad you feel you can vent. You need to sometimes.

By JulieB On 2014.07.29 09:32
Dearest Hangingon, Your honesty and humility have been a blessing. Transparency always seems to draw hearts together, and when people act like they have it all together, it can be isolating to them and to others. We all just want to know that we are not alone in our struggles, and PD brings struggles we've never imagined. Thank you for sharing what you did. I am thinking about you today and reach out across the cyberspace miles to give you a hug. xoxo

By Marilyn-NJ On 2014.07.29 16:24
These postings are purely incredible. I never really came to terms with the actual "grieving" I was and am going through. I always aware of what's been lost and I've made promises to myself to leave guilt and misgivings behind. It's important for me to stay strong and always continue on. The article says it all. Thank you for sharing it!

By jcoff012 On 2014.07.29 17:34
Makrivah, thank you for posting the article link. It is powerful, honest reading...I read it twice before posting here. I would suggest that the last point should be the first...take care of yourself...it's ok...and a needed part of this journey. Again, thank you. Jane

By makrivah On 2014.07.29 20:12
I keep a printed copy of this article in my top desk drawer and read it when I feel my "balance" slipping. It's a good reference. I'm glad some of you found it useful.

On a personal note, my 7 year old grandson spent last week with me...I mean us. A couple of observations brought my grief to the surface again. first, my grandson asked why does Pops sleep all the time? Doesn't he want to play with us? Second, my PWP scolded our grandson when he didn't respond to a question. grandson replied "well you don't answer Grandma when she talks to you." Third, grandson was able to do many tasks with ease that Pops just couldn't do. This third observation hit home hard. As the 7year old grows and learns, my PWP fades and forgets. It won't be long before my PWP is left "in the dust." A startling realization. An awakening of grief that I thought I had come to terms with.

Btw, after our grandson was back home, my PWP said that there was only one thing that bothered him about the visit... That the grandson wouldn't acknowledge that he had been spoken to. I replied "well, you do the same thing to me." He got quite still, then didn't say another word.

Did I ever mention that I hate this disease?

By Marilyn-NJ On 2014.07.30 14:24
Makrivah.....my grandson just turned 6 and your last posting could have been written by me. It's an OMG. I work for a large healthcare foundation and I came online to print your article to bring it down to someone who is working on "caregiving" issues. It's definitely a reference article. Thank you so much again for bringing attention to it.

By makrivah On 2014.07.30 18:03
So glad the article helped.

By HangingOn On 2014.07.31 10:02
I went back and read these all over again. Having a very hard day. The changes in meds worked for a couple days and now it doesn't seem to be working. He actually just sat all day yesterday, not like him at all. I went to grab his arm at one point and was caught off guard- it was so stiff it felt like a statue.
It seems that the last couple months have been a steep downhill plunge. I look at him and want to cry, but don't. I don't want him to know it is getting to me.
Reality is hitting me hard right now. Thank you all again for having this site and for the support.

By moonswife On 2014.08.01 05:35
We have three generation of "hawk watchers" in this household. Monday morning my four year old granddaughter came screaming into my room as I dressing for work. "Gramma, Gramma, Gramma....Grandpa's on the ladder, and he is up 4 steps". Mmmmm.....how far can you fall without breaking a hip, I am gauging. Out we go to the "HAVE to replace the eaves of the garage before the termites eat the whole building PROJECT" and suggest, how 'bout some pancakes. So the office opens 20 minutes late. At least he was distracted and off the ladder until the work crew arrived.

By Michele On 2014.08.01 22:37
HangingOn
I'm so sorry you are struggling and hurting so much right now. I just keep telling myself. One day at a time. Some days that works but sometimes not. Praying for you and your husband. ❤️

By Lynnie2 On 2014.08.09 12:14
I also tend to do maybe too much for my husband, but if he asks then I help him, especially getting dressed sometimes. I sometimes have to stop myself from helping too much.
He doesn't drive anymore so I have to take him to his appointments, etc.
When he did drive, he used to take off in the truck which he loved and go for a ride. I think it was his way of coping, but the doctor had issues with his driving. He's always been a good driver and even drove a semi truck after he retired, but that doesn't matter now, does it.
He is also having problems talking so we don't have long conversations. He won't hear of therapy but I hope the next time we see the MDS, he'll see how he is and suggests some help.
Anyway, I know how other feel and it's a journey for us as well as our spouses who have PD.
We have our grandchild with us this week, so he's been a little more active and even went to the pool with us, so that's progress.
I know how each of you feel and we are in different stages of their progression and some have more issues than others. We can't think of the future too much as it is too depressing, so we try to take one day at a time.
Take care everyone and have a good week.
LYNNIE


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