For those who care for someone with Parkinson's disease
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Once you get past the tragic account of losing her mother to Alzheimer's, the author, Deborah Shouse, shares tips for caregiving and participating in the HERO project (www.thecreativityconnection.com). Here are some of the tips she offers, which are helpful for us caregivers regardless of the medical condition at hand: 1. celebrate the person who is still with you, and don't compare him or her to the person they were before they got sick 2. try to go into your loved one's reality instead of trying to pull them into your reality 3. look into ways of communicating other than talking (good for PD, because of the soft voice)...she suggests coloring/drawing/painting together,reading aloud to your loved one, look at photos together, hug, make scrapbooks together 4. write down the stories you are told by your loved one, and also stories you are told by your loved one's friends (this is great for making a family history) 5. accept support if you have access to it  6. journal and blog if you have the time I thought of everyone here when I read this book. I hope all of you are doing as well as you can, hugs, lfac |
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| Good tips Lurking, thanks for the posting! I especially liked number 2 in light of recent postings on advice from Doctors to have patients stay awake most of the day so We;d sleep at night. This disease wears us down and out most doctors don't acknowledge that and treat it like we're bored so we nap. I've fallen asleep while eating, that's exhaustion, not bored or anything else. But I'm digressing and getting off subject, again thanks for the post |
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It funny you would mention that doctors want PD patients to stay awake so you sleep at night. I am going through this with my husband who has PD. He doesn't sleep that well and the MDS thinks his sleep hygiene is out of whack. Beside sleeping in his chair you can bet that about 40 minutes after taking his PD meds he is asleep or walking around in a daze if we are out somewhere.. The MDS is seeing him this week but in the meantime I have to keep him awake. He also has hallucinations and disorientation but they don't want to give him anything until they assess him this week. To get back to keeping him awake...Are you kidding me? At first I tried to keep him busy, but I do basically everything around here and trying to do the daily chores, and keeping him awake is next to impossible. He is starting to get annoyed if I wake him up. I've been taking him with me more lately when doing errands, but occasionally leave him for 30 minutes to do something. Today he didn't even miss me........ I do worry though as he gets confused, so I really shouldn't leave him I guess. |
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Lynnie, Our guys seem so much alike. I can relate to everything you said.. I can leave for about 30 minutes to do an errand or two but that's about it. Luckily my husband sleeps well at night getting up once for sure. last night we both went to bed at 8:30...He could not stay awake after sleeping all day it seems. Today we went to the park with our grand kids and-our dog I think he got a good workout. it's 8pm and I'm trying to keep him awake. I don't mind going to bed early but this is getting ridiculous.. |
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going along with #3 and #4, my Mom had a "memory book" that was very helpful for her. People with dementia often feel anxious /lost /insecure when they cannot remember parts of their life. A year and a half ago my Mom was in a rehab facility after a fall. The speech therapist who worked with her had a lot of helpful ideas about maintaining memory and orientation. We gave the therapist several photos of our family and during her sessions my mother would be asked specific questions about each picture to elicit more memory from her. Some of the stories I had not known and was surprised that my Mom still knew them. (as an example, one of the photos shows my parents smiling from a car window as they left on their honeymoon... Mom remembered that Dad's studebaker was maroon. Another photo shows them cutting their wedding cake... Mom remembered that her mother made her veil.) Describing a group photo of our family, Mom remembered each one's birth date. She looked at individual photos of each family member and told about our various personalities and activities. Then her wonderful therapist transcribed all these word-gems to put above each photo in her book, everything written in first-person as my mother had spoken them. It is typed in large print, one photo and paragraph on each looseleaf page; every page was laminated. It is a beautiful book. Mom carried this with her around the place, showed it to all her visitors and looked at it often when she was home again. That memory book continued to give my mother (and all of us) happiness and a sense of comfort. |
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Jane, It is good to know that I am not alone although I wish that you had a better time with your husband too. Yesterday I helped him shower and get dressed which usually takes 40 minutes or more. By that time it was 11 a.m. and time for his PD pills. I got dressed as when helping with a shower I tend to get wet. So I took the opportunity to go to the store for about 40 minutes, but I left a large note for him to see where I was. I came back and he didn't even miss me as he was asleep the entire time. I made a salad for lunch and mixed up some tuna to have with some nice fresh bread. I have been putting sandwiches together, but thought I should stop that and have him put the tuna on my himself. Well he ate his salad and put butter on one slice of bread and put the other slice on top without tuna. I said don't you want tuna and he didn't answer...... I asked several times for him to answer me, but he seems in a daze...... but finally said no I don't want any..... I was upset so put on a movie from Netflix just to get my mind off things, but during that time made put together a Chow Mein Casserole and in between doing the laundry which is on the same level as the kitchen/living room.. Anyway, he slept most of the day, but did manage to exercise on his incumbent bike and later before supper we went for a walk in the cold around the street.....me hanging onto his arm. That night I was so tired and fell asleep watching TV. I got ready for bed and didn't get him ready for bed like I usually do. I asked if he wanted to go to bed and he said no so I left him on the chair. He slept in his clothes for approx. 3 hours. I woke up and got him changed to his PJ's but at this point he kept looking around , but I got him settled in bed and we slept for 2 hours. Then he woke up and walking around about 5 a.m. so got him back to bed, rubbing his arm and trying to get him to relax. I think he slept for 45 minutes and up again and I couldn't get him back to bed. He said it was a strange feeling and he walked around the house looking at things. I was crying at this point and yesterday I think I cried about 2 times..... not good for a diabetic. Anyway, sorry I am taking so long explaining, but I am not going to attempt to go to church today. I thought yesterday I might be able to go to brunch as half of our little church goes to brunch after the service..... but I'm not going....... As I said in the previous reply the MDS thinks his sleep hygiene is out of whack, but there must be something else....... They will evaluate him this week. I just hope the weather isn't snowy as they are calling for accumulations this week.......more stress Oh, and he said that there was 2 people in the kitchen and one growling at him........ so hallucinations are still there. The doctor sent a fax to the Alzheimer's Society for the Day away program, but I missed her call on Friday, have to call her next week. Also I hope to get some caregiver support, if possible, as I need a break. Our daughter is coming in a few weeks for the weekend so hopefully I can get some relief. Sorry for feeling sorry for feeling sorry for myself............ |
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Sorry luringforacure for getting off subject............ I am just going through a tough time....... Just needed to get it out...... |
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Lynnie2, not a bit Post whatever you like, wherever and whenever you are able. My heart breaks reading of your and your husband's struggles as well as everyone else's here. Today I am having a hard time understanding why so many good people suffer so when the creeps of this world live free of illness. So post away, vent, say whatever eases your frustration, as we all get it. |
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Thanks, I feel better today, but instead of going to brunch I made eggs and bacon and hash brown. I miss the company of the church group, but hopefully next week is better. I want to go to the store and get some more socks like our daughter gave him for Christmas from Mark's. They don't shrink around the top and keep their shape and the elastic isn't to tight. I don't know the make unless they are Denver Hanes, so taking a pair to the store. He wear his socks to bed as his feet get cold. Also by going to the store, he'll get some exercise and some fresh air.....lol. Thanks again everyone for your support. :> 
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Lynnie, If you would like to get in touch directly with me we could message or email. Let me know and I could send you a Facebook request. We seem to have a lot in common. Jane P. S. I'm glad you had a better day |
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Dear Lynnie, your husband and yourself are in my thoughts and prayers. You have a lot on your plate. You are doing a great job. Hope there will be some relief for you both soon. God bless all PWPs and caregivers. |
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Jane, I am not on Facebook, so have to look into it when friend helps me. |
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We had the appointment last week but I won't go into details other than the nurse talked to us for an hour did a memory test which he failed, but had taken Sinemet before the appointment. By the time the assistant neurologist came in and tried to ask question and get his attention, my husband was non responsive. He was gradually drifting to sleep. Then the MDS came in and said we've been through this before, meaning the Sinemet was making his sleep and he would shut down totally if we changed the amount and couldn't give him anything else because of other health problems. Said we are fighting 3 things against each other. PD, dementia and medication. So we are finished here.......I gave him a look and he said "Well, we could try something as an experiment and I'm not sure it will work and it will cause more work for you". Instead of 2 pills, 4 times per day, administer 1 pill 8 times a day. Meaning every 2 hours. and also give him Sequel for the hallucinations at bedtime. The Sequel would be the very lowest dose, just to get him to have a better sleep. Well I started the 8 times per day and Friday night the bedtime pill. After 2 hours of sleeping in bed, he woke up for the bathroom, but his chest and stomach hurt and body not feeling right very unsettled. It scared me a little, but got him settled down to sleep another 2 hours. The next day I called the pharmacist who said to stop the night pill for 3 days and try again and if there is a reaction, we'll know he should not be taking it. The first 2 days after changing the administration, he was sleeping after each dose, but the next day, he stayed awake for almost 4 hours in afternoon and seemed more alert and normal. Joking and almost dancing. I had him coloring and doing some reading exercises and walking around. Last night we had a better sleep, however in the morning he was confused to where he was. Well we got up at 5 a.m. which was still dark, so that could have ben the factor. After taking his 7 a.m. pill and having some breakfast he went to sleep again in his chair. So this is where I am for now! Wish us luck...........and pray........ Never a dull moment. |