CAREGIVERS ARE SPECIAL PEOPLE

[JaneCares]

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@RebeccaT810923 wrote:

hi this is something new for me. I have a special needs daughter that lives with us and I have taken care of her all her life. It has been stressful over the years. I have several health issues and I am 63. I am burnt out and need to go off somewhere by myself. My husband is 73 and doesn't understand how I feel. He is getting so I have to tell him what has to be done and he repeats himself. he will not go to a doctor and says nothing is wrong. I am having to think for all of us and its overwhelming at times. I just want to be left alone at times and they don't get it. I put my faith and trust in god to give me the strength to do what I have to do everyday. Anyone else out there that is or has gone threw this? 

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Hi Rebecca,

I think just about every family caregiver goes through a process of figuring out what you can do yourself, and then reaches a point where you realize you are 'maxed out', stressed, and overwhelmed. Sounds like that's where you are, and since you have health issues (at a young 63 years old!) you might not have the time or energy to take care of YOURSELF. I hear you! 

Since your daughter has been disabled for her entire life, i hope you are aware of services that help developmentally disabled people, and that you are being helped by those services. I live in an area so rural it's considered 'frontier' (the county is the size of Connecticut and has only 7500 humans it it. Way more cows!) and even our county has services for people who are disabled. If not, can you take the time (i'm sorry that even researching help falls on YOU) to contact those services and get them to help?

As for your husband, it sounds like he might have the early stages of dementia. He's trying to cover it up, he might not even be aware of it much of the time. Is there ANYTHING wrong with him that he'd be willing to go to the doctor about? Many older men have to pee really often, for example: would he be willing to have his prostate checked? Anytime he has a slight cold, drag him in. 

And whether or not he goes to the doctor, is there anyone else he will listen to, since he's not listening to you? Does he have a pastor, and older brother, the sergeant at the local VFW, whom you could enlist in getting him to agree to seek help?  And can any other folks help you to help him, mind him, give you a break? Because it surely sounds like you are DESPERATE for a break. Do you have children? Even if they are busy with work and kids, they can also make time to help their parents. 

What have you tried? Who is around you who can give you a break? Because you really need one.

Please write more. Hang in there.

Jane

[RebeccaT810923]

hi this is something new for me. I have a special needs daughter that lives with us and I have taken care of her all her life. It has been stressful over the years. I have several health issues and I am 63. I am burnt out and need to go off somewhere by myself. My husband is 73 and doesn't understand how I feel. He is getting so I have to tell him what has to be done and he repeats himself. he will not go to a doctor and says nothing is wrong. I am having to think for all of us and its overwhelming at times. I just want to be left alone at times and they don't get it. I put my faith and trust in god to give me the strength to do what I have to do everyday. Anyone else out there that is or has gone threw this? 

[JaneCares]

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@carolp627672 wrote:

Support is certainly an important factor for a caregiver. A report in The Journals of Gerontology revealed that “just knowing that support is available is often enough to provide substantial relief.” It is absolutely necessary for a caregiver to look for a positive outlet to supply support.  There should be specific qualifications one should look for.  Supporters for caregivers should:

• Be encouraging
• Be steadfast
• Be humble
• Be a doer of good
• Be reasonable
• Be compassionate

These are basic components  and can be challenging especially in these hard economic times.  However, just as material and emotional giving brings rewards to the one who gives, so do spiritual matters play an important part.  When visiting caregivers how can they be helped? [1] listen with empathy, [2] give heartfelt commendation, [3] offer specific help.

Spiritually speaking, the Bible is the best resource we could use.  It was written by an author who knows us better than anyone else.  It provides practical, common sense advice that does not change or disappoint.  You are able to find principles that can be applied to all situations.  For instance, a mild temper can defuse a tense situation. [Proverbs 15:1]  An angry reaction can make an unpleasant situation worse.  

The Bible promises a time when mankind will enjoy relief from stressful, painful conditions.  No longer will we see our loved ones suffer.  Support comes from a God who cannot lie.  [Hebrews 6:18]

Additional information and support can be found on website jw.org.

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Hi, Carol,

Thanks for your post. Your faith gives you hope and strength. Since the USA is a particularly religious country compared to other Western democracies, I'd guess that most of our caregivers have a deep faith as well, which helps to sustain. We have a vibrant Jehovah's Witness community in this county. As a social worker, I always ask if a person has a faith community, and if so, have they asked for help, either simply a visitor now and then for company and a compassionate ear, or for a more regular set of hands, casseroles, help with transportation, grass mowing, whatever. Rarely, I'm disappointed to hear that a congregation is perceived to be judgmental and wouldn't be of help. 

Have you been a caregiver? I've heard it said, that we will all be cared for and caring for at some point in our lives.

Thanks for your post. Write more if you'd like. 

Easter's coming...

Jane

[carolp627672]

Support is certainly an important factor for a caregiver. A report in The Journals of Gerontology revealed that “just knowing that support is available is often enough to provide substantial relief.” It is absolutely necessary for a caregiver to look for a positive outlet to supply support.  There should be specific qualifications one should look for.  Supporters for caregivers should:

• Be encouraging
• Be steadfast
• Be humble
• Be a doer of good
• Be reasonable
• Be compassionate

These are basic components  and can be challenging especially in these hard economic times.  However, just as material and emotional giving brings rewards to the one who gives, so do spiritual matters play an important part.  When visiting caregivers how can they be helped? [1] listen with empathy, [2] give heartfelt commendation, [3] offer specific help.

Spiritually speaking, the Bible is the best resource we could use.  It was written by an author who knows us better than anyone else.  It provides practical, common sense advice that does not change or disappoint.  You are able to find principles that can be applied to all situations.  For instance, a mild temper can defuse a tense situation. [Proverbs 15:1]  An angry reaction can make an unpleasant situation worse.  

The Bible promises a time when mankind will enjoy relief from stressful, painful conditions.  No longer will we see our loved ones suffer.  Support comes from a God who cannot lie.  [Hebrews 6:18]

Additional information and support can be found on website jw.org.

[JaneCares]

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@k954736r wrote:

Hi Jane, 

My wife was diagnosed with Multiple System Atrophy in late 2014. As for breaks, mine are small. I get an hour or two every 2 weeks to myself.  Finances have been somewhat of a challenge, as we are living on a 3rd of what our earnings equaled. It’s to much for any type of assistance. 

I am ware are that I need to do a better job of caring for myself. I am trying. I find myself being tired most of the time. With that said, I am doing my best to keep everything going smoothly. Trust me, I have a new found respect for the stay at home Mom. The cooking, cleaning, and house maintenance can be draining. However, it is definitely worth it as Long as I still have my wife with me. 

This is the most I’ve talked about my situation. Thanks for the shoulder!!

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Hey there, you talk all you want here. There are lots of shoulders. And then you can be a shoulder for someone else. Your wife is so lucky. As you are and have been, too.

I had to look that up. Did you know there's a foundation? www.multiplesystematrophy.org  And it has all kinds of info on it. Sounds a little like Parkinson's. Did you know that sometimes people can dance even when they can't walk because those motor systems are in different places in the brain? Sometimes people with aphasia can sing even when they can't talk. Do you and your wife enjoy music together? The web site lists a hot line number. Have you ever tried that out?

This web site in general has amazing stuff for caregivers. Did you find this one on male caregivers? https://www.aarp.org/caregiving/life-balance/info-2017/hidden-male-caregiver.html  

Sorry it took so long to respond. One heckuva week. But now it's the weekend. 

All the best to you and your wife, and keep telling your story. Thank you for writing.

Jane

[RachelC961851]

I just came across this site and am so glad I found your post! I’m a 41 year old only child (also happen to be an RN) who moved back home after 23 away living my life to become my mom’s full time care giver. I moved back and basically gave up my entire life on 9.29.17. I moved into my mother’s home as she is completely unable to live alone. She is completely bedridden (due to morbid obesity), Type II diabetes, hypertension, depression, osteoarthritis, etc. I am at her beck and call 24/7/365. I am the full time housekeeper, full time cook, errand runner, grocery shopper, giver of daily bed baths, etc.  I have not slept more than 3 hours at a time in 6 months because she wakes me up through the night for random things. I love her and do not tell her no and very rarely vent my frustrations to her. The things she wakes me for: please come scratch my toe (due to her obesity she cannot reach her feet-well she prob could with considerable effort but she doesn’t try), can you move my pillow, can you find my glasses that have been lost in the hospital bed (usually within breath sight and reach), etc. she has not been out of the hospital bed in her home since 10.31.18 when she last came home from a hospital admission. I have 5 fur kids of my own and also take care of mom’s two fur babies. You only get one mom though and I love mine dearly! I am definitely starting to see that some things need to change (I’ve just come across the terms caregiver stress and caregiver exhaustion-actually was diagnosed with those during a recent unexpected ER visit!) and I’m just now starting to look around for what support groups and other resources are around for people who do what we do. I can usually only be gone from her house for about 4 hours at a time because she will need food, drink, bedpan, etc and I am the only option! We have used sitter services in the past, but that doesn’t last long as mom really only wants ME to do things for her. I apologize to everyone for the lengthy and all over the place rant! 

Thank you again!

[k954736r]

Hi Jane, 

My wife was diagnosed with Multiple System Atrophy in late 2014. As for breaks, mine are small. I get an hour or two every 2 weeks to myself.  Finances have been somewhat of a challenge, as we are living on a 3rd of what our earnings equaled. It’s to much for any type of assistance. 

I am ware are that I need to do a better job of caring for myself. I am trying. I find myself being tired most of the time. With that said, I am doing my best to keep everything going smoothly. Trust me, I have a new found respect for the stay at home Mom. The cooking, cleaning, and house maintenance can be draining. However, it is definitely worth it as Long as I still have my wife with me. 

This is the most I’ve talked about my situation. Thanks for the shoulder!!

[JaneCares]

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@KenS389712 wrote:

Thank you for this reminder.  When my husband starts to talk negatively anout the rest of my siblings not helping with the care of our Dad I always  respond by reminding him this is my purpose.  This is why I am who I am and strong. God put me here for the purose to care for my parents.  I am the first born hearing child of 2 deaf parents.  Caring for is something I have always done as a small child.  Its ok because I know that is why I am here.  Do I get weak and hate my purpose sometimes, of course! But all in all it makes it easier to be strong if I accept my purpose.  Thank you again for the reminder and support.  

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Hey there, hearing daughter. I'm glad you find such deep meaning and affirmation in your caregiving role for your deaf parents. And at the same time, I feel your husband's frustration. Perhaps helping YOU care for then is your siblings' purpose, too. As you know, caregiving is a special task, and odds are, everyone will be both caregiver and care-recipient at one time in our lives. Best share the learnings, maybe? It takes a village?

And your husband might be feeling the loss of some of your attention? I dunno. I just don't want you to believe that the caregiving for them is 100% all your job. Loving care, yes. Martyrdom, no. 

My 2 cents. Does any of this make sense? 

Jane

[JaneCares]

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@k954736r wrote:

Thank you for your post. I am a 50 something yr old male. I am the sole caregiver for my wife, who’s 5 yrs younger. I stopped working 4 yrs ago to care for my beautiful wife. I definitely have my moments. I overcome them by just thinking about how difficult life is for my wife. Your post provided a nice change of perspective for me. 

Thanks again,

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Hello there, devoted husband. She is so lucky. What happened to her and thus, to you? Do you get breaks? How do you take care of yourself? Do you both have enough to live on? You certainly don't have to answer but we all learn from each other, and you both are so young...

All the best to you both,

Jane

[KenS389712]

Thank you for this reminder.  When my husband starts to talk negatively anout the rest of my siblings not helping with the care of our Dad I always  respond by reminding him this is my purpose.  This is why I am who I am and strong. God put me here for the purose to care for my parents.  I am the first born hearing child of 2 deaf parents.  Caring for is something I have always done as a small child.  Its ok because I know that is why I am here.  Do I get weak and hate my purpose sometimes, of course! But all in all it makes it easier to be strong if I accept my purpose.  Thank you again for the reminder and support.