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Re: Is anyone taking care of a spouse?


Hi



I am new to this sight. I have been caregiver to my husband for the last three years and recently had to quit my job and become a full-time caregiver because he can't be alone anymore. He has dementia and Parkinson's and gets lost in our home.It has been a big adjustment because my husband gets so confused with everything and I have to take care of absolutely everything. I feel alone most of the time even though he is here. Unless you are in this situation no-one else understands. Talking with other caregivers is important because we understand the hi's and lo's of our days.



Good Luck and God Bless each of you!



Mary

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Hi a3427c Newbie! I'm so sorry to hear you have the total burden of caring for your wife, two teenagers, the house, a job, etc.! I care for my husband 24/7, as well as the house, finances, shopping, etc. So I understand your frustrations and the emotional drain! My husband has Lewy Body Dementia and became unable to speak last September. At that time he also lost his ability to walk, feed himself or sit up. I have a caregiver 7 days a week for 3 hours a day and three afternoons a week for 2 hours. At the most my husband is awake 6 hours a day. I have been caring for him for the past 3 and a half years! Caring for my husband wasn't as difficult till this last September but with his loss of body movement and becoming aphasic it is harder for me. I continue to talk to him hoping he understands me and wishing I could once again hear his voice! I'm so happy when he occasionally smiles I feel he knows who I am and we connect.
Caregiving is a very demanding, all consuming job when you love the person! I do hope you are getting some time for you. I hope you are also getting sometime with your teenagers. I'm sure they feel the lost of both their parents! You definitely need support, not just physically but emotionally and spiritually as well!
This is a great site to vent feelings, get support, share experiences, etc. You made a GREAT start reaching out!
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Yes.Since 2011.  My wife has late stage FTD. Body is functional, brain is 2 year old with autism, no memory of life, family, or basic motor skills, eating, drinking. She is unable to follow instruction, her eyes work but brain does not interpret.
She is a shell that has to be hand fed. 2 people to toilet, walk, sit, stand. She is combative and can not communicate, But she has personality and we laugh often with her, when she is not wanderiing aimlessly, screaming and growling.

Our state has a great Medicaid program, one of the best, but I still have to fight, and win for adequate attendant hours. Family members are paid caregivers 80 hours per week. It is still not enough ,as she requires someone to be in her space for her safety 24/7 and she doesn't like to sleep. We have to toilet her every 2 hours even in sleep hours.
Our much berated Congress has legislated some great help for us in Medicaid.
I have had to fight the greed of the insurance companies who are contracted to provide Medicaid covered services. 

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I hope this is okay to post.

I write a post for stressed-out caregivers as many may have
1) overlooked these resources and solutions
2) may not be technologically knowledgeable about these available solutions
https://www.retirementincome.net/retirement-living/caregiving/

 

If this helps one person to relieve some stress or burden, then the post has value.

 

Larry Klein, Publisher
Retirement Income Blog

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Husband made this statement today if the liver doctor would prescribe me a night time pain medication then I would stop drinking which us worse on my liver a pain pill at bedtime or alcohol all day.

GEH
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@geh66 wrote:

Husband made this statement today if the liver doctor would prescribe me a night time pain medication then I would stop drinking which us worse on my liver a pain pill at bedtime or alcohol all day.


One way to possibly 'intervene' is to enlist the help of his doctor. Pain is often undertreated in addicts and alcoholics who are still using, and the alcoholic has a legitimate beef. They want to self-medicate with alcohol because they can't sleep. is there a way you can drop by the doctor's office and leave a note with the nurse, a few days before an appointment? you could tell the doctor that your husband has pain, is actively drinking, is non compliant, and can the doctor please address these issues. 

 

sometimes patients listen to doctors...

 

jane

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Have been over it and over it with liver Dr who says get youself a primary care physician and tell him. I found a primary care physician made an appointment husband had me cancel it just like he had me cancell his MRI appoinment today.

GEH
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Have been over it and over it with liver Dr who says get youself a primary care physician and tell him. I found a primary care physician made an appointment husband had me cancel it just like he canceled his MRI appt today.

GEH
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So frustrating when the person you are caring for does stuff like telling you to cancel a doctor's appointment. The human's ability to self destruct knows no bounds.

 

I'm sorry.

 

Jane

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It. Is most frustrating when the individual who is in self destruct mode wants to take their care giver down with them and the legal system makes it so time consuming and difficult.

GEH
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It has been some time since my last post the namiair support app has closed down husband ended up at er with turns out to be pneumonia but left AMA so we got no official diagnosis or medication they also did a chest x-ray & an ultrasound of his heart 

Have decide next time not going to take him till he gets so sick he is unable to speak for self and then I am taking all his belongings and I am going home so if he leaves ama he will be doing it on foot and he will be doing it nekid. He has let me schedule an appointment with his PC physician we have to go to hospital to get Dr reports ect.

GEH
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@ginaherms wrote:

It has been some time since my last post the namiair support app has closed down husband ended up at er with turns out to be pneumonia but left AMA so we got no official diagnosis or medication they also did a chest x-ray & an ultrasound of his heart 

Have decide next time not going to take him till he gets so sick he is unable to speak for self and then I am taking all his belongings and I am going home so if he leaves ama he will be doing it on foot and he will be doing it nekid. He has let me schedule an appointment with his PC physician we have to go to hospital to get Dr reports ect.


Hi Gina,

I looked back at some of your old posts and i remember some of your issues about your husband's non compliance and also some instability in your job. Since he is disabled for mental health reasons, and the NAMI app is closed, i wonder if there is other support for you. Seriously, the stress you are dealing with every day must feel overwhelming at times. Yet you need each other, right? At least financially speaking? I dunno, you tell me. Are you ready to leave? I bet you imagine leaving a lot. A chronically mentally ill person is a huge challenge no matter who you are.

 

So, sources of help: any in person NAMI groups? A NAMI counselor?  A pastor? Do you have health insurance with mental health benefits? A counselor even just once a month might really help. I work for a county mental health clinic and we take all comers, have a sliding scale, and bend over backwards to get people the counseling they need.

 

I'm so sorry. Argh.

 

Jane

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Granddaughter story is husband son started doing meth and may be selling it bailed on babies mana she wants the world to support her and the kids lost public assistance because she won't do job search thing see where that's going, There was a movie with Clint Eastwood every way but loose that is how I feel stretched every which way but loose

 

GEH
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No there are no other souces I have looked I have even tried to find an attorney to help me get adult guardianship so I can set something boundaries on his drinking, the way he talks to me ect but none will help me. Recently I had to take him to ER with chest pains turns out he has pneumonia and get left er ama before talking to Dr so he did not get the scrip for antibiotics. He has appointment with PC physician next week we have all the reports from er. In the last 2 weeks he has

ran 2 red lights yes he was dui, yes want out in the worst way at times but he has no one else, I figure I could probably file for divorce but by the time I go thru the divorce courts and all the ugliness he will probably have died, and I still love my husband and all I want to do is take care if him and his best interest therefore mine, I have taken steps to take some control we had an unauthorized charge to my bank account so they cancelled that card which happened to be the one he had they sent a new card I took that virgin card put on all the utility accounts my aarp subscrip auto insurance ect and then locked it up, I have taken a position box and next I plan to order a new card for his direct Express card and cancel the one he has, I will give him $415 of the cash we get from renting rooms and that us his for the month when it's gone it gone get gets $830 a month SSD so the cash I am giving him is half of that his check will pay rent and part of the electric bill my pay check will pick up the rest of the utility bills ect and what's left if the cash will go to the car payment and husband can lump it or like it. I also plan to get my name on utility bills rental agreement is already in my name and rental agreement with our 2 roomies is in my name. Wether he likes it or not he needs me and not just financially and he has created a situation where I need him  I have accepted that my husband has decided he wants to commit suicide by alcohol nothing I can do about it so things need to change so that I can prepare financiallly for his passing and the loss of his SSD benefits and be able to manuver myself into a position to be there for his 3 granddaughters should the situation arise the face ending up in the system that's a whole other story 

 

 

 

GEH
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@ginaherms wrote:

No there are no other souces I have looked I have even tried to find an attorney to help me get adult guardianship so I can set something boundaries on his drinking, the way he talks to me ect but none will help me. Recently I had to take him to ER with chest pains turns out he has pneumonia and get left er ama before talking to Dr so he did not get the scrip for antibiotics. He has appointment with PC physician next week we have all the reports from er. In the last 2 weeks he has

ran 2 red lights yes he was dui, yes want out in the worst way at times but he has no one else, I figure I could probably file for divorce but by the time I go thru the divorce courts and all the ugliness he will probably have died, and I still love my husband and all I want to do is take care if him and his best interest therefore mine, I have taken steps to take some control we had an unauthorized charge to my bank account so they cancelled that card which happened to be the one he had they sent a new card I took that virgin card put on all the utility accounts my aarp subscrip auto insurance ect and then locked it up, I have taken a position box and next I plan to order a new card for his direct Express card and cancel the one he has, I will give him $415 of the cash we get from renting rooms and that us his for the month when it's gone it gone get gets $830 a month SSD so the cash I am giving him is half of that his check will pay rent and part of the electric bill my pay check will pick up the rest of the utility bills ect and what's left if the cash will go to the car payment and husband can lump it or like it. I also plan to get my name on utility bills rental agreement is already in my name and rental agreement with our 2 roomies is in my name. Wether he likes it or not he needs me and not just financially and he has created a situation where I need him  I have accepted that my husband has decided he wants to commit suicide by alcohol nothing I can do about it so things need to change so that I can prepare financiallly for his passing and the loss of his SSD benefits and be able to manuver myself into a position to be there for his 3 granddaughters should the situation arise the face ending up in the system that's a whole other story 

 

 

 


Hey, Gina,

What a hot mess. Well, one thing i think you could do is call the police when he is drinking and driving so he'll stop doing that. What you do NOT want is him hitting someone and hurting/killing them. I am an addictions counselor now, and he'd be arrested and hopefully given the option to divert his sentence into alcohol treatment on probation. i work with a bunch of these folks. I run a DUI group. With the threat of jail, i've seen some serious alcoholics get sober. 

 

that's one option.

I also counsel meth users. Tough crowd. 

 

There is help out there for you, even if he's a stubborn old coot sick with the serious and often fatal disease of alcoholism, and the free version of help is Alanon. Do check it out. 

 

And keep talking.

 

Jane

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Thank You, I am seriously and I mean seriously considering doing that next time he takes the van after drinking it is in both our names, hopefully the police will let him call me to come get the van.

It is our only transport and I need it for work. Here in Texas being his first offense that I know of he may get 6 months but that would be long enough for me to do what I need to to do.

It seems it may be the only way I have to get him in front of a judge then so be it, he goes down for dui then maybe that will make it easier for me to get coplete adult guardianship over him, maybe the judge might nake that part of his probation.

 

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@g477525h wrote:

Thank You, I am seriously and I mean seriously considering doing that next time he takes the van after drinking it is in both our names, hopefully the police will let him call me to come get the van.

It is our only transport and I need it for work. Here in Texas being his first offense that I know of he may get 6 months but that would be long enough for me to do what I need to to do.

It seems it may be the only way I have to get him in front of a judge then so be it, he goes down for dui then maybe that will make it easier for me to get coplete adult guardianship over him, maybe the judge might nake that part of his probation.

 


It sounds like a battle royale. And exhausting.

I'm not an attorney, but i'm pretty sure that you can't just get guardianship over a combative very sick person who's made bad choices, UNLESS two physicians say he's incompetent to make either health or financial decisions (two different determinations.)  I went through a training to investigate claims of 'harm to self and others' for the purpose of committing someone to mental health care, and the proof you have to come up with is pretty intense. People have the 'right' to make really dumb choices. The only time the state steps in is if he is a danger to himself or others and that is very strictly defined. Do you have an attorney? They are not cheap: perhaps your friendship network has a lawyer in it? If you have a faith community, maybe there's one there. You could ask about the process of guardianship. But i really think taking away his keys is the best thing, and then dealing with his Royal Orneriness becomes less of a threat. Death by car is not a good choice. As you know.

 

I'm serious about you finding an Alanon group. Everyone there has been through some version of this with an alcoholic. It's free (a dollar donation is suggested) and it's good stuff.

 

Keep talking. We're here.

 

Jane

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 It a battle royal and it is exhausting, I did look for an Alanon group there is none in my town or neighbor hood, as for the conservatorship laws I think they are ridiculously I am not asking to lock him up and throw away the key I am asking to have control so I can start setting boundaries for his behavior and put him on allowance, he my not be a physical danger to him self or me blut he is an indirect physical dangerto himself he is committing suicide by alcohol and is becoming a financial danger to both of us,

GEH
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@geh66 wrote:

It is most frustrating when the individual who is in self destruct mode wants to take their care giver down with them and the legal system makes it so time consuming and difficult.


Which is why you have a choice to detach from his self-destruction, standing by, but letting the natural course of things, as HE chooses the courses, moves relentlessly forward. 

 

Detachment. While still loving him. Very hard. Also necessary for your own sanity.

 

Jane

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I have been caring for my husband who has Lewy Body dementia for the past three years.  Up till a week ago Tuesday he was doing very well.  He was able to sit up on the side of the bed for his bath, he could help get himself dressed, he could walk from his bed to his chair, he could feed himself and he was able to talk.

Then he had an "episode" after lunch.  I don't know what happened, but after he took his afternoon nap he was limp all over.  He couldn't even hold his head up.  He can no longer sit up independently, talk, feed himself, or walk.  Then two day later he had a grand mal seizure in the evening. 

The dementia specialist and his primary physician are saying nothing.  I spoke with the office nurse at the dementia specialist office and she basically said, "It's the disease.".  I am heart sick.

He has slowly regained some movement in his arms and left leg, but his right leg is flaccid and he can sit up independently or talk.

I started hospice services for him "in case" he passed as I don't want to have to call 911.  I know he can graduate from hospice if he gets better, this is just so frustrating, heartbreaking, AWFUL!

I feel scared all the time and I'm an RN, but I'm so afraid he's going to have another episode and I know there is NOTHING I can do to.  And I think that's the biggest problem I have, I can't make this better for him, other than caring for him.  I'm just so tired and sad all the time.

Any suggestions other than me taking a respite from him or placing him in a nursing home?

Thank you for taking time to read!

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Dear wife who is an RN who's taking care of your husband who has Lewy Body dementia for the past three years,

I am so sorry this is happening to you. It sounds to me like he had a stroke, but the doctors are acting like, 'eh, there's nothing to be done...' But what about a little PT? if he's regained some of his abilities, then perhaps some of the disability can be reversed. it would help you to physically care for him if he could do more for himself. 

Darn.

 

I think it's a good idea to sign him up for hospice to avoid hospitalizations, and you can take advantage of what they have to offer. like the 3 to 5 days/week aide who can thoroughly bathe him in the hour to 90 minutes they can stay. The social worker could be your new best friend: ask her (or him, though i have yet to meet a mail hospice social worker and i used to be a female one) about how to help him, how to take a break, what is available in your county or city. Like a respite care program, or the best agencies to use to hire an aide so you can get away for 4 hours or an entire day. or to hire so you can sleep through the night at least one night a week.

 

If its Medicare hospice, then the benefit is recertified after 90 days, or three months, and then if he passes (meets criteria for decline) then you've got another 90 days. after the first 6 months, the recertification process happens every 60 days. Medicare insists on this. but you always have warning. And the social worker is supposed to help you with the transition back to regular care. you don't have to take him to the hospital even if he is NOT in hospice, if you have a living will/ advance directive. And in some states there is something called POLST or MOLST, a medical order for life sustaining treatment, which indicates that he is not to be transferred to a hospital. i can explain fore of that if it's of interest.

 

meanwhile you have a lot on your plate, including especially the deep sadness that goes along with missing your life partner, who he used to be.

 

what is helping you to survive this? who else can help you? do you have adult children who can help? Does he have a brother or sister who can take him on for an afternoon?

 

thank you for taking the time to write. please write more. we all learn from each other's stories.

 

Jane

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Hi Jane, Thank you for your replay and Thank you to the other person who replied regarding the essential oils spray. I will definitely try that suggestion!

No we don't have adult children to help us, nor do we have family that lives in state to help us. I don't know if he has any family in this country as we have never had any contact with them.

I do have someone who comes in for 3 hours in the morning and on Tuesday, Wednesday and Thursday afternoon for 2 hours so I can go swimming. So I make sure I get out everyday. Thank GOD for friends! Last month my therapist died unexpectedly, so it's been hard because I haven't found anyone to go to yet. So much change.

Today he was complaining of stomach discomfort and before I could try to give him lunch he had a vaso-vagal episode with extreme diarrhea. Now he's resting in bed. I had a stomach bug last week I was hoping he wouldn't get it but I think he did!

I wish I knew how to help him but I've done everything I can think of to keep him comfortable. Yes, we have a MOLST form, and a DNR form for the home, we also have a Power of Attorney and all the other legal papers needed. After his last hospitalization I decided we were done with that, they can't help him and it frightens him, so I'm keeping him home where he can be comfortable. I'm doing the best I can. I just need to get past my fear.

I know I'm afraid he's going to die and I know he's going to die so it's a double edged sword.

I know Hospice can offer volunteers but I'm so tired of people being in my house. I just want some peace and quiet and normalcy. Some day all of this will change, and I'll miss him terribly but I won't miss the work, the fear, the tears, the pain of watching a brilliant man slowly disappear.

Thank you for reading.
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 Oh my, the death of your therapist is a blow! I'm very attached to my therapist! Good grief! Another thing to grieve over. I'm so sorry.

 

It sounds like you've taken care of the many things that most folks have neglected, and you're taking care of your health and your mind, too, (when you find another therapist!)  The loss of your brilliant husband/friend/companion is so painful, and ongoing. 

 

I hear you about having a quiet home under your own control.  

 

I'm so glad you've written. 

 

We are here.

 

Jane

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It's the holidays.  I placed my husband in Hospice at the beginning of October.  He had an "episode" the end of September which left him unable to situp, talk, walk, or feed himself.  I say "episode" because I don't know what happened exactly.  Prior to his afternoon nap he had been talking to me, fed himself lunch, walked to his chari with the aide and myself and was able to sit up independently.  After lunch his whole body was flaccid.  I didn't send him to the hoispital because they can't fix his dementia.  For the first three days I thought he was going to die, but he didn't and here we are facing Christmas. 

 

I didn't rea;ize how draining these past three months have been on me till now. I'm so tired regardless of how much sleep I get and I feel no one cares about me.  They always ask about my husband, but not how I am.  I spoke with my best friend tonight and told her I was just so tired I don't have the energy to deal with anymore problems and she said, "well maybe it's time to place him!"  I told her now wasn't the time to talk about that. 

 

I just want someone to listen to me, to be there for me.  I realize it's difficult to listen to me.  I've chosen to care for my husband for the past three and a half years.  And now that we are facing the end, who knows when, how do I say enough and put him in a home?  My therapist tellls me to get more help.  Okay, but then when do I have them come into the house.  I have an aide help me get him up and then I go out for a couple of hours.  I come home the aide leaves, I feed him lunch, then he takes a nap for a couple of hours.  I sit him up in his chair, give him his drink, and meds, then I lift him into bed and again he sleeps for an two hours. Then I give him his last meds for the day and change him, let him rest for another couple of hours and I check his pants, change as needed and then tuck him in for the night and I'm off to bed.  I look forward to our time alone.  Three afternoons a week I swim and a caregiver comes in and sits with him while he's in bed.  So I fet out.

 

But my feelings are more about feeling isolated and alone.  It's so hard now that my husband can't talk.  I'm constantly guessing what does he need?  And hoping I'm giving or doing what he needs!  And waiting for him to die.  No one wants to talk about it and we can't talk about it anymore. 

 

I'm trying to live one moment at a time.  I can deal with my husband and what he needs, but I don't have any left over energy to deal with the house or any issues involving the house.  I just can't do it all anymore.  Now if I could just let go of the feeling I NEED to do it ALL, I may make it.  One moment at a time.

 

Thank you for reading.  Any suggestions, not involving placing my husband or getting more help would be greatly appreciated.

 

Thank you!

 

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I do understand about the non-talking part. One of the effects that my wife has gone through after he double stroke episode was the time of non communication. I was very hard for me. I am so used to my wife and i having late night chats. My only suggestion is to continue to love him the same because that is the thing that has kept you thus far it will carry you the rest of the way no matter how it turns out My wife has since then recovered her speech even though it is not the same as it was
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Thank You c611836h for your response! I agree I continue to talk to him and love and share with him. There are times he tries to talk and I'm hoping I'm understanding what he is saying correctly. But either way, I'm here for him! I so glad your wife regained her speech! Till later! Take Care!
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..."But my feelings are more about feeling isolated and alone.  It's so hard now that my husband can't talk.  I'm constantly guessing what does he need?  And hoping I'm giving or doing what he needs!  And waiting for him to die.  No one wants to talk about it and we can't talk about it anymore. 

 

I'm trying to live one moment at a time.  I can deal with my husband and what he needs, but I don't have any left over energy to deal with the house or any issues involving the house.  I just can't do it all anymore.  Now if I could just let go of the feeling I NEED to do it ALL, I may make it.  One moment at a time.....

 

 

Hello there. And here it is Christmas Eve. Perhaps your last one with him. I don't think you need to place him at all. You have a good set up there, you get breaks, you care for him beautifully and gently from the sounds of it. You do need non judgmental presence in the form of friends or family who LISTEN and do not judge, who care for YOU as well as him. People ask about him as one way to guage how YOU are doing, but they could be more direct. It isn't easy to know what to say to someone like you, but all the same that is no excuse for being dismissive or callous. I think people are filled to the brim with their own problems and since they cannot solve YOUR problem(s), they snap out an answer. Get more help! Put him in a home!  Ah, no. What is so hard is that there is no easy answer. One day at a time one hour one minute at a time is the pace of caregiving, particularly in hospice when you are indeed waiting for the next decline, wondering if today will be the day, and then a week goes by, or another month.

 

Your isolation is worrisome for the long run, when he passes away. And that is tough. There's a new york times article about it that is important for everyone to read, i think: http://www.nytimes.com/2016/12/22/upshot/how-social-isolation-is-killing-us.html?mabReward=CTM&recp=...

 

I recently moved to a tiny town in a very rural area of Oregon. First thing i did was ingratiate myself to the librarian, who knows a great deal about the town and what goes on. She directed me to a bulletin board, which is in the post office of all places. I learned there's a volunteer group that meets monthly and plans fundraisers for this or that. They raise money for sports equipment for the local school since there are a lot of low income students. I joined the group. Then i checked out the local churches. There is no church in my denomination within 2 hours' drive so i joined one that i can walk to. It's worship style is not what i'm used to. but i have gotten to know more folks and i'm learning more names. 

 

i'm also online with the town's facebook page, where i've learned all kinds of things.

 

Where do you live? What interests do you have? Is there any hobby you have, like singing, or knitting, that might link you to others?  

 

Can you even think about this now? if not, wait.

 

But there are many readers of this caregiving community and writers full of wisdom. So please keep writing. Thank you for writing what you have. 

 

Jane

 

 

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Hi Jane! Thank you for your response it was so timely! Well Christmas and New Year's have come and gone and my husband is still here and most likely will be for awhile! I was beginning to feel better about life with the holidays over and then I hurt my leg getting out of the car, last Wednesday. I've been to my Primary physician, my chiropractor and my massage therapist. It is getting better but I find it disturbing when I'm told this has happened because my body is just stressed out from caring for my husband.
I suppose it's my fault for asking what happened? And when I'm told it's the stress of caregiving I feel so guilty because I must be doing something wrong that I can't care for him and me. I decided it's just too much constant stress and worry.
My massage therapist was the best, we sat and talked and she basically said if this is what you want to do then this is the right thing for you to do! And today she told to keep moving so my knee doesn't lock up. I left so much more empowered talking with her both days.
I know I can this for my husband. And I can learn to let go of the fear and stress that has been constant aspects in my life since he got worse.
I realize I do worry about him but I'm working on letting go of that as it has not done anything positive for me. This situation will change, I don't know when or how but it will happen.
Thank You for reading, Thank You for caring! I hope your New Year is going well! Till later!
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@lb50258545 wrote:
Hi Jane! Thank you for your response it was so timely! Well Christmas and New Year's have come and gone and my husband is still here and most likely will be for awhile! I was beginning to feel better about life with the holidays over and then I hurt my leg getting out of the car, last Wednesday. I've been to my Primary physician, my chiropractor and my massage therapist. It is getting better but I find it disturbing when I'm told this has happened because my body is just stressed out from caring for my husband.
I suppose it's my fault for asking what happened? And when I'm told it's the stress of caregiving I feel so guilty because I must be doing something wrong that I can't care for him and me. I decided it's just too much constant stress and worry.
My massage therapist was the best, we sat and talked and she basically said if this is what you want to do then this is the right thing for you to do! And today she told to keep moving so my knee doesn't lock up. I left so much more empowered talking with her both days.
I know I can this for my husband. And I can learn to let go of the fear and stress that has been constant aspects in my life since he got worse.
I realize I do worry about him but I'm working on letting go of that as it has not done anything positive for me. This situation will change, I don't know when or how but it will happen.
Thank You for reading, Thank You for caring! I hope your New Year is going well! Till later!

I'm so sorry you hurt your leg! Sounds like you  have a team of people helping you. Funny (not funny) how people react to a caregiver like yourself. You DO choose this, and people get into a space where they blame you for your dedication, your hard work. I mean seriously? Blaming the victim. So common, so unhelpful. You choose it. You're doing it, you are taking care of yourself, juggling all of it. So i wish people around you would give you a break!

 

Please keep us in the loop as to how things are going. You are both inspiring and very smart about all of this. 

 

2017 would be great if i hadn't caught the crud that's going around. 3 days of flat on my back aches and pains, coughs, and faucet nose. Lovely. This too shall pass.

 

Thank you so much for the update! 

Jane

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Hi Jane, Thank you for your response! I so appreciate your support. I do feel my health issues are being blamed on my choosing to care for my husband. You hit the nail on the head! And it hurts. It hurts to think that family and friends think so little of me or my husband that they would blame either of us for our current life situation. I sometimes think they are jealous of my husband because I have focused my life and attention on him and not them. It's so sad because I would love to have them involved in our life, not to do anything but visit, have a meal with us, share a holiday, or just chat on the phone without freaking out if I'm hurt or having a bad a day. But that's life and it will change!
Again, Thank you for your understanding and insight! I'm sorry to hear you have the crud and hope you are feeling a bit better! The joys of winter and viruses! Hopefully it will get better and better very soon! Till later! Take Care!
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lb50258545 wrote:a
Again, Thank you for your understanding and insight! I'm sorry to hear you have the crud and hope you are feeling a bit better! The joys of winter and viruses! Hopefully it will get better and better very soon! Till later! Take Care!

I've been thinking on this. So much of people's behavior, including my own, has so little to do with the person they are talking to or ignoring or in this case subtly judging.  If family and friends are collectively wagging their fingers in a kind of "i told you so. i told you to be more careful... that caregiving is really too much in the end..."  or some variation, they may very well be projecting their own priorities and fears on your situation. It's not that they think so little of the two of you. It's that they don't even want to THINK about the tough choices they'll have to make in the future when, pretty much inevitably, they will be faced with their own declining health, or their spouses, or a parent, or god forbid a disabled child. 

 

do any of these friends ever say something like, "do let us know if there's anything we can do"?  if so, you can always take them up on it. Like, call one of them up, or even less intrusive, email or text. While you're on the mend, is there any way you could shovel our walk? or, i'm too tired to cook, any chance you could bring by a casserole?  I dunno, sometimes when you get very specific, people can help. you've taken away the struggle of thinking and offering.

 

or, if there's a friend or family member you particularly miss, see if you can schedule a time to see them, at a cafe, say. reach out. people might respond.

 

just a thought.

Jane

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