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Topic I don't want to complain BUT..... Go to previous topic Go to next topic Go to higher level

By umajane On 2015.11.03 00:11
I just do not want to be a caregiver everyday 24/7....Yes I do have a little help and yes things are not that bad BUT..
I wish I had someone to talk to at night. I'd love to go to a movie and discuss the plot....my hubby slept through the movie today. I'd love to have just one normal day but that's not going to happen.
I could go on and on but just wanted to vent.
So instead I have my friends, books, amazing family and small getaways as I do have a few caregivers. I love to cook and garden BUT am sad that that I cannot really share this with my man. Thanks for letting me vent my fellow caregivers.

By SparkysGal On 2015.11.03 08:59
~sigh~ I am not there yet with my guy, but I look down the road towards the future and it saddens me. I have no words of wisdom, but being able to vent here in this safe place is a good thing.

By makrivah On 2015.11.03 09:08
Please vent away. I have the exact same frustrations. Two weeks ago, his doctor appointments were a real bummer. C/L increased 20% gradually. Incontinence worse so switched from pills to patch. Dropped 6 points on the cognitive test... Thus the hoped for Mild Cognitive Impairment status quo slid into the possible/probable range for Alzheimer's. Life ain't easy. Our golden years (he's 71, I'm 69) aren't so golden. I strive for understanding and patience (staying UP), but some days I walk the line between screaming and crying...all while smiling on the outside.

By sosad25 On 2015.11.03 11:41
I can relate so well to what you are saying. My husband has had Parkinson's for over 21 years. I too am tired of feeding, dressing, showering him, the incontinence etc. He can do none of those things for himself. It never seems to end. I do not feel that I have a partner that I can share things with anymore. I know this disease makes him feel lonely and isolated but I too feel that way. We cannot even go on an overnight trip anywhere as it will be too confusing for him. The TV remote is baffling for him. I even hate trying to go out to dinner as I'm on pins and needles the whole time--picking up food on the floor, his napkin on the floor, the spills. A few weeks ago we did go out and it took 4 men to get him from the table into my car. There will not be anymore vacations, hosting dinner for friends, even babysitting the grandchildren is too difficult now. I am 62 and he is 67 and our golden years look very tarnished. The sound of my own name is like fingers on a chalk board to me as he calls for me 50 times a day at least. Sorry that I am venting too and I know that many people are worse off but life is not much fun anymore.

By LC On 2015.11.03 13:21
SoSad25 I could have written your post. We are the same ages as you and your husband. We no longer go to restaurants either. His drooling is distressing to others in the resturant. I am exhausted even though my husband goes to adult day care 5 days per week. I feel myself tensing up when it's time for him to come home. I do a lot of crying. My doctor has offered me antidepressants if I want them. I haven't decided if that is the what I want. We have been married for 42 years and I miss our old life. I miss my best friend.

By VioletV On 2015.11.03 13:57
Jane,
So very true. I hate to complain, but oh my it does get to be stultifying. We can't go to movies. Can't watch any TV really. We can watch the Met Opera stream if it's early enough in the day (fortunately something we both love), but sometimes I'd just enjoy a little Law and Order marathon, or a mindless movie--or even a serious foreign film on Netflix. We've had to leave 3 of the last 4 plays we've gone to because they were overwhelming for him.

The caregiving does get old. I am lucky to have substantial help, but my husband, who had serious abandonment issues from his childhood has developed a kind of separation anxiety if I'm not on hand. So even if I have someone here, it's rough on him for me to go off. I still insist on getting out when I can, but sometimes the upheaval isn't worth it.

VV

By exhausted wife On 2015.11.04 19:13
[deleted]

By VioletV On 2015.11.04 19:16
And now . . .
Here I am having just gotten a text from my sisters (who live in the same town as my mother) that she was taken to the hospital with possible cardiac symptoms.

I can't decide to just go there, and can't even tell my husband (who is getting more and more confused and having memory loss) about being worried about my mother (who is nearly 90).

It's lonely, isn't it?

By carman96 On 2015.11.06 08:03
Sorry about your mother Violet. It's a tough situation.
All of these posts are so similar to my life. I wish I had the energy to take him more places. People don't realize how exhausting it is for both of us. Plus with his dementia don't know how confusing it will be for him.

By VioletV On 2015.11.07 16:34
So,
I'm delighted to say that my mother's hospital visit was just a night or two, and that she is back at home and planning to drive herself to an eye doctors' appt. tomorrow.

She is nearly 90, still working part time, still driving (safely) during the day, and living on her own.

So I didn't need to rush down there, and with all the family there I would probably have been in the way. Will see her at Christmas (assuming husb. is able to travel).

Onward and upward (or at least, onward...)

By jcoff012 On 2015.11.07 18:36
I am sorry you are all having such a difficult time. We aren't there, yet. And yet...

It is *I* who has needed help this last month, and this was *my* schedule this week...Monday, cardiologist and two new meds; on Tuesday, a physical at my primary care and blood draws and A1C and other tests; Wednesday, shots of Avastin in each eye; and, Thursday, two hours at the dentist getting braces!

I tell you this because I see all of this from another point of view...as the patient! I cannnot drive right now, so for each visit, my PWP, my husband, unselfishly got up, took his meds and put aside his own bouts of nausea, etc. to drive me to and from (some were 35 miles away, one way), then sat and waited foe me! All the while, he never once complained to me....I know he was tired, worried, and at times sad for me, but not once, did he he make me feel bad.

This was not to make light of anyone's struggles, for, as I said, we are not there, yet. I just know how much I appreciate him and how my love for him has grown even more because of his selflessness. I pray I, too, will be as kind.

May you all find peace and know what you are doing for your husband IS appreciated by him and that you need to vent here when you are facing difficult times. No one here is truly alone in this journey and no one along this path will ever judge you or tell you to not feel as you do. I just hope you all remember that iff this were reversed, he would be there for you, too. I know he would. Take care.

By makrivah On 2015.11.08 10:59
I shared this article (see link below) about a year and a half ago. Many of you found it helpful in coping with the incremental losses associated with PD. Caregiver grieving can be overwhelming. recognizing grief is what we are experiencing day by day, loss by loss just might make things bearable. As I watch my husband's mental status decline, although emotionally wrenching for me, may be a blessing for him. I don't believe he is aware of what he has lost.

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

By Trusting On 2015.11.11 21:00
Wow, this post is me. When I came to this group several years ago, I was happy, not really understanding the ones who wanted to scream, etc. We had just begun the journey. I retired 3 yrs ago b/c he couldn't be by himself all day every day. He is still angry that he can't drive and trust me, I wish he could too. He is losing more and more control of mind and body. My heart breaks for him but my patients are wearing thin.

I could tell I was beginning to stress so I paid a visit to my doctor. I told him the thing that stresses me is I don't handle this better. I told him everything in my life is great and I should be able to give my husband care that he deserves. I told him that I get so tired of showing or telling him something a hundreds times but then.....he finished my sentence......"you feel guilty". He insisted on increasing my medication and it did help. Hugs and prayers to all of you out there.

By carman96 On 2015.11.13 08:21
Trusting, my husband is still mad about driving though been several years, and sometimes still insists that he can drive. I can't leave him alone at all.

By cdonavon On 2015.11.29 11:50
My husband was just recently diagnosed, but has had worsening symptoms for some time. The level of care giving has accelerated in the past few weeks. He just began taking carba dopa/leva dopa and it's too early to tell if it will help alleviate his symptoms. His mind is still pretty sharp although I have noticed increased short-term forgetfulness over the past few months. I was attributing it to a mild stroke he had in April, but reading your posts leads me to understand that it is related to PD? Right now, he is barely able to stand much less walk and we live in a four level condo so he is confined to the bedroom at the moment and I get my exercise running up and down the stairs to help him use the urinal, bringing food, etc. etc. I don't have a lot of help and need to work on that. I work part-time, but can do some of it from home which is a blessing. I'm only beginning to recognize the level of stress I'm experiencing (and have been under for a while). People keep telling me I need to take care of myself, and I know it's true, but just getting a good night's sleep is an issue as he wakes in the night and needs help to urinate. I have so many questions. It feels good to have found this forum and see that I'm not alone in this. I relate to so many of your posts - the avoidance of the shower which has been going on for some time, the belief he could still drive if I let him (which I don't), the incontinence, the difficulty feeding himself. Thank God he still has his sense of humor!


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