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Here's to Your Health:  Caregivers Chat and Encouragement  |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
 Posted - Aug 06 2010 : 12:45:31 PM
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I know there is a thread devoted to farmgirls who are sick or chronically ill themselves. How about one for those of us who are caregivers ... either for a family member, other loved one, or anyone else? It's one of the toughest jobs in the world. I'd love to chat with, lend a listening ear to, pray for, encourage other farmgirl caregivers and also have that for myself at those times I really need it. Caregiving is a 24/7 job and an often thankless one at that. We need each other.
If there is already a thread devoted to this topic, please point me to it. I'd love to participate. |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 06 2010 : 1:39:51 PM
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Carole, I began that thread you are talking about! Most of us on it care for ourselves despite some difficulties, but also have parents or others that we are or have been dealing with in either total caregiving roles, or partial or emotional and legal ways! this is a great idea you have here!! I know for some of us, the person we help ,there is not always an easy time of it, especially due to personality conflicts, family conflicts, etc. Even in the most 'ideal' situations, the burnout is a tough problem. Most definately let's all support one another!!! My family tries to help my 83 year old mom. She has never been an easy personality ( I am being kind here, I think narcississtic is the word). It is really tough most days, and we all feel upset and crazy most of the time??!!! Can anyone relate? Lets be here for one another and troubleshhot and pray, pray for each other!! Carole, THANK YOU, for thinking of this thread!! Blessings, Linda
Country at Heart |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 06 2010 : 3:51:07 PM
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Thanks, Linda. I read a lot of your thread and it is great. Very active. I didn't want to duplicate so glad I have your blessings. We'll just have to see if there is any interest in this topic. It isn't a "fun" one but very real life. Your are so right that a lot of the time as a caregiver you feel as if you are going nutty. Can't help but thinking, "haven't I already been around this block about a thousand times???".
What do you do to pick yourself up on a "down" day? I know you are a 'prayin granny' but what else?
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Edited by - csmartyonline on Aug 06 2010 3:53:06 PM |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 06 2010 : 4:20:48 PM
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Oh Carole, lol!! I wish I knew the answers! I struggle with the guilt, frustration and at times resentment that I think comes with it all. Never mind the often physical and/or emotional exhaustion. I just ordered a book 'Dealing with the Difficult Aging Parent'. The reviews sounded helpful! Farmgirls are helpful! I have my cousin who is going thru it as well and we share and pray. Brenda (Classygram) and I vent and pray for each other. My cousin told me once to never carry the guilt. That we do the best we can and that is ALL we can do. Also, try not to take the 'bad' days too personal. BUT, that sometimes is hard not to do!! Yikes, I have gone on and on. Lol! Can you tell this is a tough one for me? Carole, thanks again for this topic. Think we can be there to help each other!
Country at Heart |
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classygram
True Blue Farmgirl
1812 Posts
Brenda
Pleasant Hill
Mo.
USA
1812 Posts |
Posted - Aug 06 2010 : 6:54:57 PM
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Carol the Lord had to be talking to you. Linda and I have discussed this until were blue in the face. It seems that our mothers are really very demanding. And you know its their way or no way. I try to do the best for my 86 year old mother, but it just doesn't seem to be good enough. I find myself waking in the morning and my first thoughts are "what is she going to what done today." One month I checked my cell phone statement and had well over 2000 calls from just mom. We live just down the street from my mom and if we drive by with out telling her where we are going she's calling me not 5 mins after we leave. Most of the things that I get so upset about are small to others, but when its everyday it gets very tiring. I also have a husband and home to take care of. But both have to take second place. Which I know is wrong. But what do I do, If you don't jump when she says jump, it's worse than if you had just gotten it done. And of course the guilt is awful. Here I was just going on and on and I feel that I should not be sharing these feelings. But I do appreciate that there is a place to come and hear how the others are dealing with these types of situations. Thank you so much for starting this. It helps to know we aren't alone in this journey.I do believe we can pray for each other and know that he's there to show us the way.
Hugs, Brenda
"What lies behind us, and what lies before us are small matter compared to what lies within us."
Ralph Waldo Emerson
Seek reasons to Love..In every sigment of everyday-look for something that brings forth within you a feeling of Love-Abraham Hicks |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 07 2010 : 05:37:56 AM
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It's so good to talk to you, Linda and Brenda. I know there are no easy answers. My mom lived with us the last ten years of her life but she was healthy until the last year or so. My caregiving now is for my husband who has had Parkinson's Disease for at least 25 years (or more) and was finally correctly diagnosed about 17 years ago. It has been a long haul. It is so much different if someone is very ill for a short time, or even a long time, and gets well as opposed to someone who is very ill and never gets well. I walk a lot and garden and when I can try to focus on other projects in the community and so forth. But sometimes you just have to vent in order to keep your sanity. And that's okay.
I'm off to the Farmers' Market this morning to get some fresh produce, eggs, and bread for the week. That's something I look forward to every Saturday. I hope we can continue to talk, vent, pray, whatever ... and perhaps others will join us as time goes along.
Carole
"To every season there is a purpose." |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 07 2010 : 06:43:22 AM
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Carole, thank you for sharing. The farmers markets can be such a relaxing place. Enjoy! I have friends back home that have children with autism. It is very difficult to just get thru the days sometimes I think. Do you have any crafts that you enjoy? Many times that is a good stress reliever as well. Have a blessed day! Looking forward to sharing with all of you. Linda
Country at Heart |
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BonnieBlue
True Blue Farmgirl
67 Posts
bonnie
amite
LA
USA
67 Posts |
Posted - Aug 07 2010 : 7:48:32 PM
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I am so glad I found this Topic. I am the sole Caregiver for my husband who has Myotonic Muscular Dystrophy. I have all the house work, cooking, insurance, Dr. appointments to make, cleaning and then there is the outside work. Grass cutting, weedeating,. Sometimes I am at my Wits end. My husband is very weak in his legs and balance is very bad, he has to be very careful and not fall. The few times a week that I go to town, he wants to know how long I will be gone and how soon I will be back. I tell him all the time, I cannot predite how long the errands will take.
Thank you all for starting this Topic. |
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classygram
True Blue Farmgirl
1812 Posts
Brenda
Pleasant Hill
Mo.
USA
1812 Posts |
Posted - Aug 07 2010 : 8:04:03 PM
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Bonnie your story reminded me of when I was helping with my dad when he had cancer. When I would have to run mom somewhere he'd always ask when we'd be home. We wouldn't even get out of town before he was calling me to see if we were almost home. Bless his heart, just trying to get him to understand that we would be a little longer was very difficult. You do have your hands full girlfriend, Do you have anyone to help you out or relieve you from time to time? Prayers to everyone that is the caregiver, it can be very trying and at times precious. But the times when their attitudes are not very kind, its hard not to think, you'll never be able to keep up. All we can do is the best we can and still take the time to take care of ourselves. Were not much help to them if we are worn to a frazzle. Pray tomorrow is a better day for all.
Hugs and Blessings, Brenda
"What lies behind us, and what lies before us are small matter compared to what lies within us."
Ralph Waldo Emerson
Seek reasons to Love..In every sigment of everyday-look for something that brings forth within you a feeling of Love-Abraham Hicks |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 08 2010 : 03:49:14 AM
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Welcome, Bonnie. Your story sounds almost exactly like mine. I know there are people all around us but when you have someone with the type of illnesses our husband's have, people tend to shy away. Even relatives. And we are left to do it all (or at least 99% of it). I try to put myself in the sick person's shoes but, honestly, it is equally difficult for the caregiver if not more so in some ways. Our lives feel as if they have been taken away from us even though we aren't sick ourselves. You lose a lot of your former life, your home is no longer the sanctuary it once was, friends drift away. People always inquire about the sick one or ask about them, but what about the caregiver??? Hardly anyone ever asks how we're doing. Kinda makes me feel about as valuable as a sack of potatoes or something sometimes. And it's especially difficult if the sick one is in the home 24/7. You feel as if you lose your life, your time, your home. No wonder we feel like we're losing our sanity at times. In some ways, we are because we lose our frame of reference for things the way they once were.
It's not that I mind helping someone who is sick, but we all have our limits. One of the toughest things is that the person can change so much and is often a different person ... not the same person that you knew and could depend on. It's like dealing with a total stranger at times.
How long has your husband had Myotic Muscular Dystrophy? My hubby has been having trouble with his balance and falling more lately. That really scares me sometimes.
Please continue to post. I'm new to the Farmgirl thing but everyone seems so kind and helpful.
Love and prayers,
Carole |
Edited by - csmartyonline on Aug 08 2010 03:52:05 AM |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 08 2010 : 9:00:09 PM
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Good evening, ladies! I haven't been online too much this weekend so I will post more in AM. So grateful to the farmgirl forum! This is easier said than done sometimes, I know! But taking even 15 min each day, more of course if you can, but set the alarm a bit earlier or bed a bit later at nite?! Use those precious few moments with tea, prayer, reading, watch the sun rise/set. It is amazing how much that routine refreshes! Blessings, linda
Country at Heart |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 09 2010 : 05:15:49 AM
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| I agree. I am usually a very early riser as you can see by the time on my last post (actually 5 a.m. my time but sometimes I'm up by 4) and that's when I have quiet time and then do my watering and get some gardening done and visit with friends online. :-) |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 09 2010 : 06:23:51 AM
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Good AM!! By the way, glad you are joining in Bonnie! Our thoughts and prayers are with you as well! I spent the majority of my life within the healthcare field. It is all I have ever done until an permanent injury at home took me out of it. then I began the role from caregiving to nearly a year of being in a wheelchair and being dependent upon family to help and care. I still have to be in a wheelchair for anything that involves a lot of walking. My balance is not very stable, so I always use a cane and have to elevate my foot/ankle a lot. I recently got a ankle brace and that does help some with stability. A few years ago, my dad took ill and within 2 weeks he passed away. We did get him home with hospice the last 3 days of his life which was a blessing. 2 months after his passing, my mom took very ill, but did recover within a month. I am sharing all of this so that prhaps as I share more and we all troubleshoot, I will make more sense!! Lol! The point is I seem to have gone the whole route, caregiving, patient, family of patients. My burnout within the healthcare field was bad, as it is with so many now. But, even understanding that, my experience as family of patients was not at all fun. My moments as the patient was not either. Still isnt as I am not able to live life like I used to. As I know you understand, life for the patient is not easy either. I think in the home setting especially, the ability to never REALLY get away from the situation is very difficult. Carole, Bonnie, do you have access to, or qualify for any hospice type help or visiting nurse assistance? It can be a blessing beyond measure!! There are nursing support, psychological support, and homehealth supplies that are provided for you. I believe respite care for the caregiver as well. Your local Visiting nurse/Hospice offices often provide free group support sessions in their offices that may be a great help for you to share with others and know that you are not so alone in this. Check out online support message boards too. Many are very helpful. Especially, as you say, friends and family often seem to disappear. Well, I did not mean to ramble sooo much! This is just a topic very close to my heart. I will be praying and thinking about you ladies today. Blessings, Linda
Country at Heart |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 09 2010 : 07:17:58 AM
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No, you didn't ramble too much, Linda. You are a blessing. We don't qualify for hospise because the situation isn't near death and since TN is cash-strapped like just about every other state, I don't think there is anything if you are not low-income which we aren't. It's even going to be cut for low income this coming year. Heartbreaking. I can get respite care for $$ from a couple of local companies which is fine, but there are so many things at this point in time that only the 24/7 caregiver knows and can't adequately convey altogether to someone giving respite care. But you do what you can.
I was a social worker and case manager and also worked in a medical clinic so I know a bit about what you are saying about burn-out.
Have a great day, all. It's heating up to near the triple digits here again this week. Ugh.
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 09 2010 : 08:25:18 AM
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Carole, you completely understand the system and how it works, or doesnt work??!! Thinking of everyone today. As I have shared with Brenda, my 'sanity' is eased in that my mom lives about 1 1/2 hours drive from me. I assure you the distance is my only saving grace. There will come a time when I am sure that will change. It scares me already I am afraid to admit. Take care ladies. Linda
Country at Heart |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 09 2010 : 11:29:21 AM
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| Caregiving can be very scary at times, and there's no shame in admitting fear. And I agree that a lot of times the "system" fails to work. |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 09 2010 : 2:24:12 PM
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I was just thinking how frustrating it must be to be in a wheelchair, Linda. I know things are frustrating for a sick or injured person as well as for the caregivers. I think frustration is one of the biggest issues I face sometimes. Hopefully there will be a support group for PD here soon ... there is one for Alzheimer's but not for PD yet ... or maybe one just for caregivers regardless of the illness. As a Social Worker, I used to facilitate support groups but I just would like to be a part of one. I don't have the "oomph" right now to facilitate a group. I might be willing to share the responsibility with others but just don't think I could start one and run it solo at this time. I hope Bonnie can find one. They really are valuable.
How is the weather in Kansas? |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 10 2010 : 04:18:21 AM
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| Good morning, y'all ... and whoever else is reading this. We're up and at 'em for another day. We'll make it through because "we are woman" ... "we are strong, we are invincible". We roar. LOL. Sometimes my 'roar' is a whimper. But we're in this together and I appreciate that. :-) |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 10 2010 : 04:52:45 AM
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Lol! I love that Helen Reddy song! Yes, after facing each of the roles, I can agree it is frustrating on all. But I do think the needs of the caregiver are special and often ignored by family and friends! Carole have you found any online support message boards? That may help you in the meantime? Let me see what might be found and get back to everyone on that. It has been hard with so many budget cuts affecting much needed programs. Also, with respite, it is so true that it is more difficult to explain to someone else than it is to just stay put and do it yourself! Well, ladies, it is a brand new morning and my thoughts and prayers go with you! Blessings, linda
Country at Heart |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 10 2010 : 05:03:49 AM
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| Also wanted to mention a good book -- "The 36-Hour Day" by Mace and Rabins. It's geared toward Alzheimer's and dementia but has some good stuff than can apply to many caregiving situations. |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 10 2010 : 06:09:21 AM
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| There are several online message boards for PD. I was very active on one about 6-10 years ago ... but then it 'went south', so to speak. It got to be a hot mess as they say in today's jargon. Another one is very sporadic anymore. I couldn't remember the password to a third and the webmaster apparently doesn't respond very quickly to requests to recover a password. He also carries grudges against people who haven't agreed with him. I've tried several but I guess things change over time. The thing is that when people are so ill, it is reflected everywhere. They can't help it but it comes out like it does with us all. And most with PD are progressivly getting worse and sometimes so do the boards. I'm waiting patiently (sort of) for a group in town. Cville is large enough that I believe it will come along soon. Maybe wishful thinking but I hope not. |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 10 2010 : 07:16:08 AM
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Carole, I really hope it does!! Well, I toyed with sharing this?! Its not a great 'mom' AM for me. The thing, and the guilt is, my daughters and I need to be more involved, need to be helping her more. However, she doesnt really let us? She will find 'friends' that become her 'beck and call' people until they get run ragged and burn out. She is a tough personality with in todays terms, narcissism, ADD, OCD. She begins any routine and it becomes set in stone for her. Its not an age thing, she has been this way her entire life! Finally as an adult my grandma and aunt began to clue me in and I gratefully began to realize I was not crazy!! My dad always told me if he passed first, I would have my hands full with her! Myself and my kids always knew it too! My daughter has stopped her part time job so maybe when school starts she and I could make more time to go out to my mom? But even still, she wouldnt change her routines and would still run these people around! Example? My mom always went grocery shopping every day, even with pantry and fridge full. Dragged me places everyday as a kid. Now older, when ill with flu etc, rather than one list for one person once or twice? She will send several friends, family out daily. It all sounds silly, but as Brenda said before, when it all adds up it gets pretty stressful. Another example, she wont use the pharmacy in town, her friends take her to the ones 30-45 min away. And she wont really get the meds all at once in one trip like most 'normal' people? So, I think you get the idea. Trying and wanting to help her is difficult! She makes it that way! Yet we still feel guilty! Ok, sorry! Thank you for letting me scream! Blessings, linda
Country at Heart |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 10 2010 : 10:43:37 AM
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Wow, Linda, that's quite a challenge. Sounds like someone who is bound and determined to be in control. It's hard not to feel guilty even though we know we can't be all things to all people -- or even to one person, isn't it? 'The Great Guilt Trip' ... and someone is always more than happy to stamp your ticket for that ride. How long can those friends (in Psychology they're called "enablers") keep doing all that?
It can make you feel like you're going crazy alright. If you weren't a very conscientious and faithful person you probably wouldn't care as much. I imagine a lot of the "friends" -- the ones that have burned out -- understand but don't want to say anything. Maybe someone will, even if it doesn't do a whole lot for the situation.
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 10 2010 : 1:19:31 PM
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Carole, how is your day going? I hope it is a calm and ok one for you! Thank you so much for my venting earlier! Linda
Country at Heart |
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csmartyonline
True Blue Farmgirl
247 Posts
Carole
Clarksville
TN
USA
247 Posts |
Posted - Aug 10 2010 : 3:02:29 PM
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| Pretty good. Got some things done today. We had rain but it's supposed to be 100 tomorrow. Yikes! Thanks for asking, Linda. How was your day? |
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prayin granny
True Blue Farmgirl
1874 Posts
Linda
Kansas
1874 Posts |
Posted - Aug 11 2010 : 3:55:09 PM
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Good evening ladies! How has everyones day been? Carole, Bonnie I hope you are doing ok?! Blessings, Linda
Country at Heart |
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Here's to Your Health: Caregivers Chat and Encouragement |
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Caregivers Chat and Encouragement
