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genden69

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miracleseeker    676

Thanks Genden but I feel fine.   I told my doctor it's just one of those things that people get that is harmless but yes I have scheduled the ultrasound for next Friday.  it's weird but I feel better now  then before I was my mom's CG.  I just don't have time to think about every little aches and pain that comes up and wonder what is wrong with me.  It's probably a good thing that I don't have time to analyze so I can concentrate on work and my mom.  

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silent55    1

Thanks genden69 for your words. Have had few people around me telling the same thing and somewhere my brain screams that I can't do much more but the daughter in me finds it real hard to watch my mother go through this.

Thanks Miracleseeker and very glad you are getting the Ultrasound. Do not worry ahead of time about what may happen and stress out before the tests.Wish you the very best and take care.

Thanks Pathfinder you all give me the courage to move forward  and face the music as they say because many a day I feel like am desperately swimming with no life jacket.Specially now as am about leave my Mother  for a few months and head back to the states for my husbands tests which I hope will be okay.

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Shelley    0

Thank you for sharing. I am so glad to find others out there having the same feelings and problems. I felt like I was alone until I read your post. It is really hard to deal with all of this sometimes.

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LAD    217

As a YOPD.... I am so scared to think of my husband and my kids becoming overwhelmed by being my caregiver. Trying now to make sure we do some things to make it easier-we will be in a one level condo within the next few years. I don't need it now but I'm doing it anyway. 

Prayers for you all on that part of the PD journey.

 

LAD

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sarakay    13

"My DH was diagnosed in 2011. 7 months ago he qualified for hospice. He had it for six months and then "graduated" because he had not declined enough to keep it. So..........I took him to my GP and she wrote orders for home health care. He now has OT, PT and speech and hearing.  each one comes to see him once a week. He is supposed to do the exercises they have given him but he doesn't. He sits in his chair in the LR 90% of the time and watches sports or CNN. I take care of myself in the following ways. I fix myself a lovely lunch and go into another room where there is a TV, shut the door and have a leisurely lunch and watch Netflix or  recording. I take an hour nap every afternoon. I have a spiritual meet-up group who meets here once a week while DH is in the other room. I go to choir rehearsal once a week. I'm a member of Threshold choir and a group of them come here and sing to him once a week. In the evenings I watch my favorite programs on one TV and he watches his favorite sports channel in another room. I fix him a very nice dinner and then we eat on trays and watch Netflix or a movie. He is hard of hearing and his thinking and comprehension are very slow. I spend a lot of time on my laptop emailing or using google. I email 2 friends every day whose husbands have PD. We started a PD support group which meets once a month. I eat very healthy food and drink lots of water. I pray a lot. I do get depressed. I do feel the pain of seeing him deteriorate but I just keep going. somehow i make it one day at a time. He wears briefs 24/7 and uses a walker 95% of the time. In the last year and 1/2 I have lost 45 pounds and feel much better. He is 81 and I will be 76 in Aug. I do wonder how many more years I will be able to do this.I take it one day at a time.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


 

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Sarakay, your husband sounds a lot like mine! Didn't want to do exercise, just sits in his lift chair, seems apathetic or depressed.  It has been a struggle doing everything I have to do for him, but I am finally getting some help to come in 1-2 times a week. I am leaving the state this week for a week to attend a family wedding, so he will be going into a care facility on a respite stay. I'm pretty sure it will be a good break for both of us. It sounds like you're taking care of yourself and engaging with friends.  Hang in there!

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Quietstill    450

Sarakay and California, we're still mobile here, but DH has non tremor PD.  I've gotten the leaving the burners on thing under control, but am now dealing with the fridge being left open and now, water faucets turned on and walked away from.  It's always something, and I know I have to take a small vacation by myself.  Hard to do, but necessary.

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Pathfinder    65

Wow, where to begin. I have a similar story as those here. My husband is mobile, his dementia is mostly about short term memory, comprehension, and cause and effect. He has Parkinsonism and severe Gasteoparesis as well. Mostly he sleeps, throws up a lot, or dry heaves. 

I sort of do my own thing too. We eat meals together, I watch movies or do hobby projects whenever I need a creative break. He doesn't watch movies or sports tv anymore. He does read a daily newspaper, and I insist he walk around a store or market once a week just to get him out of the house. He just sleeps. All the time it seems like. He is doing PT for conditioning and lower back pain. We have a lot of specialists, numerous appointments, and it's a lot to keep up with. Like the others, he does PT, rehab, won't do the exercises at home and rinse and repeat! It is exhausting to take him to six weeks of therapy and to see it undone because he sleeps so much. He can't comprehend that he needs to do the exercise and we are back to square one.

It is what it is, I am managing very well, for the most part hubby is stable for the moment and that is good news.

Take care of yourselves, know that others care.

 

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coacht    95

My DW always thinks things like rock steady boxing are the answer when she won't even do the most basic exercises at home including her voice therapy. She is always looking for the homerun and won't work at the little things she can easily do.

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silent55    1
On 5/27/2017 at 2:49 AM, silent55 said:

I feel each and everyone's pain as I am going through it with my mother for the last three years and it feels like forever and am desperate as am the only child and her primary caregiver. She developed symptoms around the time of my father passing away but were not conclusive until she had a fall. Fortunately she was diagnosed with early stage and is on 1/2 tablet Syndopa TD but has over the last year developed mood changes, paranoia and a form of dementia making it difficult to talk with her and she is very stubborn which is the total opposite of her before.

Am married and my husband has been diagnosed with CLL which is at zero stage. He is retired now and both of us spending most of my time in Asia with my mother and have to fly back for about four months annually for my husbands tests to be done. This is tough as when am with her am already drained at the end of the day and am aware of neglecting my husband and myself in the process. So for over an year now have a nurse aide with her 24 hours daily to take care of her needs and exercises which she is very reluctant to follow.

I find that I am neglecting myself though I now that I need to take care of myself and getting annoyed and feel drained by afternoon. Am worried that I may miss out on doing stuff for her and feel guilty that by going out of the country am neglecting her.

 

On 5/27/2017 at 2:49 AM, silent55 said:

Hi everyone and thanks for your support which has given me strength to move forward as I was scared of how to handle things and felt alone.

Sarakay my mother sounds very much like your husband but is mobile and wants to do things herself. I now have a 24 hour nurse aide with her to take a bit of the strain away as long distance care giving was not possible while am away.

Coacht I feel your pain but have finally accepted this as my mothers "new normal" and want to try and spend the time with her positively

I know it's been a a few months but to me it feels a long time. A lot of changes have happened between my mother and me which have been really hard to deal with. She was diagnosed with PD related Dementia in May which explained part of her behavior but I was left more stressed out with her not wanting to do a lot of things like her daily exercise, having breakfast, drinking water up to about 2 liters as told by doctor, her increased levels of suspicion about people in general. I found that I was acting the " bad cop" and having to yell or constantly argue with her causing a strain in our relationship. There were a couple of times she wanted me to leave her and get back to the US as she was not getting my support in not doing things her way which was not doing most things and sitting in one place the whole day. Since getting back to the US for my break i realized that I needed to take care of myself, stay calm and not let her push my buttons.

I now do things for myself like reading, listening to music watching videos and spend more time with my husband doing things together as I neglected " our time" , trying to be with her out of guilt.

It is really hard to see ones loved one go down fast.

 

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