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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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Hey Jane, Thank you for your response! Christmas is over, the holiday had very minor bumps, the visit with my brother was GREAT. I'm so glad he came up! We worked together in the yard, the kitchen, watched a good movie and talked! Life doesn't get any better! My husband was able to visit a bit as well, I'm very grateful for the time we all spent together! '
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@lb50258545 wrote:
Hey Jane, Thank you for your response! Christmas is over, the holiday had very minor bumps, the visit with my brother was GREAT. I'm so glad he came up! We worked together in the yard, the kitchen, watched a good movie and talked! Life doesn't get any better! My husband was able to visit a bit as well, I'm very grateful for the time we all spent together! '

Hooray! It sounds like a lovely visit, refreshing, fun and relaxing. A stronger connection with your brother. As you can say, life doesn't get any better. SO GLAD. And thanks for sharing your joy with us.

 

Jane

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Hi LeeAnn, I don't have any answers for you but I wanted to let you know I'm sending you lots of positive energy and prayers. I too am caring for my husband 24/7 his illness is completely different but I understand the sense of isolation and frustration. Have you considered talking to his doctor, asking for help with his care. His paranoia might be related to his cognitive disorder and the doctor may have a medication that would help that. It certainly doesn't hurt to call and ask. You need to be heard and get some support! Good Luck! Keep writing I agree it is tremendously helpful to write in this space, it's cathartic! Take Care!
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I have been taking care of my husband, who was first diagnosed with "induced dementia" 8 years ago. It was a sudden onset following a routine neurosurgical procedure. Although I have been spared the dilemmas of dealing with discouraging driving and  his dealing with finances, since it was obvious he was no longer capable of managing such tasks, the catastrophic onset gave me no chance to learn what to expect or learn communication techniques. I find myself isolated, angry and frustrated. I am now retired so I can watch him 24/7, and it is that very constant burden that becomes overwhelming. Right at this moment he is pacing, which is the only activity he engages in other than sleeping and eating. There is no possibility of conversation or meaningful communication. I have not been able to find any activities to distract him or occupy his interest. The pacing is annoying, like Chinese water torture. I am sorry for the extremely negative tone of this posting- it's not the real me, but it is where I am right now. I had attached a video of his behavior,to another site which I made to obtain input on whether others had experienced it. One woman replied and described the same behavior in her father- it was so comforting to know it was "normal" in dementia behaviors. Peace to all of you.

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@TerrieCNM wrote:

I have been taking care of my husband, who was first diagnosed with "induced dementia" 8 years ago. It was a sudden onset following a routine neurosurgical procedure. Although I have been spared the dilemmas of dealing with discouraging driving and  his dealing with finances, since it was obvious he was no longer capable of managing such tasks, the catastrophic onset gave me no chance to learn what to expect or learn communication techniques. I find myself isolated, angry and frustrated. I am now retired so I can watch him 24/7, and it is that very constant burden that becomes overwhelming. Right at this moment he is pacing, which is the only activity he engages in other than sleeping and eating. There is no possibility of conversation or meaningful communication. I have not been able to find any activities to distract him or occupy his interest. The pacing is annoying, like Chinese water torture. I am sorry for the extremely negative tone of this posting- it's not the real me, but it is where I am right now. I had attached a video of his behavior,to another site which I made to obtain input on whether others had experienced it. One woman replied and described the same behavior in her father- it was so comforting to know it was "normal" in dementia behaviors. Peace to all of you.


Hi Terrie,

It sounds like torture.

I've never heard of 'induced dementia'. It sounds like a brain injury and there is a specific kind of rehab/treatment for that. There is also medication that calms damaged brains: several different kinds, depending on the individual person and the kind of brain disease we're dealing with. People with traumatic brain injury, stroke, and various kinds of dementias, all tend to experience 'agitation' in various forms, as well as sleep disorders, 'sundowning' (upset behavior the minute the sun goes down) and other problems. 

I'm wondering if has seen helpful physicians. I've worked as a social worker in neurology floors, oncology, and in geriatric community settings. Now i work in home hospice, and every single dementia patient has some kind of agitation at some point. 

I'd like to suggest that you consider finding a second and perhaps third opinion on what would help him. Any of the following might be helpful: 

* a neurologist

* a psychiatrist who specializes in geriatrics and dementia

* a geriatric primary care doctor

 

Is he a veteran? You could get most of this care for free at a VA if so.

 

Just a thought. I am so sorry. I am worried about YOU.

Keep sharing?

Jane

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Just found your response to my post- so appreciative of your time.You are correct, it is essentially a brain injury, but so many of the behaviors are similar to Alz I am wondering if that is also going on. He has been evaluated by neuropsychologists, and followed by a neurologist, but little assistance in coping. So grateful for input from other caregivers- the real experts!
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Hi Terrie,

I'm sorry you are experiencing dementia with your husband, it's a horrible disease. My husband also dementia and is slowly slipping away from me. I can also relate to your anger, isolation and frustration. I do hope you are getting out to shop, visit others, relax, exercise, or doing something that makes you feel good that is so important for you and may help how you feel! Pacing is a difficult symptom to deal with because the person feels compelled to mover and there is no deterring them. He's burning a lot of energy pacing so hopefully he's getting snacks while he's pacing as well as fluids. Would he be safe on a non motorized treadmill? That might give him the feeling of pacing but keep him in one place. I wish you the very best! God Bless You!
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Thank you so much for your comments- and God Bless you!!
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Good Morning,  It's a New Year, the winter has finally arrived in Upstate New York and the holidays are over.  I was hoping with the passing of the holidays my mood would lighten up but it seems I'm stuck in my grief and NOTHING major has happened or changed with my husband!  I have never been in such a demanding job as I am giving him care.  And here's the kicker, he NEVER asks me or demands I do something for him.  He's very accepting of whatever I chose for him.  It's me, I worry about how he's doing.  I focus on his bodily functions concerned about when the last whatever occured,  is he comfortable, or has the "disease" progressed again?!  I know my reaction is simply who I am as a person regardless of my being a nurse.  And I'm not seeking answers because there are none, I'm just seeking emotional support.  Yes, I work with a therapist, yes, I get out and have time for me, unfortunately it never seems to be enough.  The real problem is I'm tired of grieving and it's not over yet and probably won't be for a long time.  I trying to figure out how to make life better for me and continue to care for him.  I know I can do this, some days are just easier than others.  Thank you for reading!  I hope things in your life are going well!  God Bless You!

 

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Is there a senior caretaker center near you? Even taking him one day a week would give you a break. This is very hard.
Mars
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                Yes I am taking care of my wife. She has had a very bad kidney for over 15 years. This has caused her to have 9 strokes that instead spreading accross her brain as they normally do. All of hers passed right on top of each other. This has caused her to become paralyzed on her left side. Her left kidney has been removed this past June 11th. so now we are dealing with her healing. to to[ it off she also has voices in her head that tell her stuff like she is going to have her arms and legs cut off on the paralyzed side if she does not use them. she also has thought that I am married to my first wife.

                 It is sad to watch someone who is 12 years younger than me to suffer so much. I also quit working because she needs so much companionship and attention. I am 61 and she is 49. The one thing I have learned is some how taje a little time for yourself before you get run down. If you are sick and neglect yourself you will do them no good. Just go to a movie ot whatever you do to relax. Find someone to help care for them at least a couple times a month so you can get away.

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Yes, I take care of my husband - for several years.  I understand everything you said, and many of the others.  Unless you deal with it personally, you really don't understand what it is like 24/7.  I wish I had answers for you and me, but I think it does help to know you are not alone in the situation.  I can only offer words of encouragement.  Keep on doing your best, but take care of you first.  If you don't care for yourself, you won't be any help to your loved one.

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I have had the worst couple of days caring for my husband that I've had in a very long time!  He's in a downward slump so he's sleeping a great deal, which I can handle but his inability to walk like he has been is really throwing me.  He's done so well for so long this is so difficult for me to accept!  Thank Goodness I have the lift otherwise I would be up a creek.  I wish I had someone I could call on to help me at any given moment but I don't it just me!  Thank Goodness my husband is understanding and tries as much as he can to help.  I know he feels badly about his inability as well so I'm really trying not to be upset around him. 

I know none of you have any answers , I just appreciate your reading and understanding.  Thank you in advance for saying a prayer for us!  I hope your weekend is going well! 

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Yep, we take care of each other.  Always have!

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I have been taking care of my husband since 2007.  He has a brain tumor on his brain stem. He has had surgery, chemo and radation but doctors were not able to get all of it because of where it is located.  It has affected his balance, hearing and throat. In addition, he has rhematoid arthritis in both his knees, shoulders hands and feet. I work full time so he has a full time caregiver who comes 5 days a week from 8 to 4 pm.  Even with that, working full time and caregiving after work can be very stressful and tiring.  My husband is a night walker, going to the kitchen for food at 2 am and he goes to the bathroom approximately 3 or four times at night, so I don't get a lot of good sleep.  One saving grace for me is my daughter and son as well as my grandson now that he's 14 and staying with us.  I have a little more time to go and do something for myself when they are available to sit with Papa.  Also, my church family is very supportive and would probably do even more if I would just ask them.  I have learned that I don't have to go it alone.  Please find your respite so that you don't burn out totally.  It is a hard job but that's what comes with the "I do".

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Oh my goodness, this sounds exhausting.

 

Where is the bathroom? If it's down the hall or a distance from his side of the bed, one thought is to get a bedside commode. And/or a bottle urinal. He can find his way quickly to the one, or find the other on his bedside table, do his business, and get back in bed. This does mean that someone needs to clean it out the next morning, but there might be a lot less disruption.

 

I work with families who are caring for a member with dementia, and sometimes they hire an aide for the night just so they can get a good night's sleep. One family has a night aide Monday through Thursday nights, and then the extended family takes turns with the weekend nights. The man's wife and one of his 8 adult children who's retired, hang out with him all day.  Not cheap. But the night aide has helped the patient avoid falling or otherwise banging around at night, and his wife is much healthier after a night's sleep.

 

I'm so glad to hear there are multiple helpers for you!   

 

Jane

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I have not taken care of my spouse, yet.  However, for the last seven years I have/had been the sole caregiver to an Aunt with Alzheimer's.  She had no children and no one in our family would take it on.  So I did, quit my job, which I loved, and became her Legal Guardian.  Unfortunately my Aunt past three weeks ago.  I can relate to the alone feeling so much.  In the beginning I reached out to everyone and anyone in my family, and I come from a big family, with nothing but doors closing.  I spoke with the nurse of my Aunt's doctor and she really helped me with support, understanding, and lots of knowledge.  I learned there is so much help out there, that isn't family by blood but will become family by choice, if you reach out.  I eventually got assistance to come in a couple of times a week.  It worked out so well that eventually it increased to several times a week, to 24 hours a day.  This was a life saver for me as a caregiver.  As a caregiver I learned you really have to take care of yourself in order to help your loved one and you must ask and get help.  The breaks I had with the assistance helped me physically, mentally, etc.  Eventually my Aunt got so bad that I did have to place her in a memory care/assisted living facility.  But my caregiver status did not end there and continued until the moment she passed.  There are resources out there and all you have to do is ask and keep asking until you get the information, answer, and help you need.  

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I have been my wife's sole caregiver for several years.  I am 67 and she is 68.  She has crohns disease and rheumatoid arthritis. She was hospitalizes each year for 3 months between 2009 when the removed a large portion of her colon through 2012. Mostly kidney stones and liver complications brought on by the crohns.

 

We live in the country and I drive 50 miles to work 4 days each week and work remote the 5th day from home. I do all the medical scheduling, prescription tracking, shopping and housework (laundry and cooking). I’m not much of a housekeeper.

 

I went through periods of depression, anger and anxiety dealing with this. I am now at peace with my role. I am retiring at the end of December and will start cleaning and de-cluttering our home.

 

Each day brings its own challenges. I feel lonesome much of the time but have accepted my lot.   The strange thing is that when I was 11 my mother had a stroke and I did the same thing for 4 years before she died.  Funny how life works.  More later...

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@tomrevoir wrote:

I have been my wife's sole caregiver for several years.  I am 67 and she is 68.  She has crohns disease and rheumatoid arthritis. She was hospitalizes each year for 3 months between 2009 when the removed a large portion of her colon through 2012. Mostly kidney stones and liver complications brought on by the crohns.

 

We live in the country and I drive 50 miles to work 4 days each week and work remote the 5th day from home. I do all the medical scheduling, prescription tracking, shopping and housework (laundry and cooking). I’m not much of a housekeeper.

 

I went through periods of depression, anger and anxiety dealing with this. I am now at peace with my role. I am retiring at the end of December and will start cleaning and de-cluttering our home.

 

Each day brings its own challenges. I feel lonesome much of the time but have accepted my lot.   The strange thing is that when I was 11 my mother had a stroke and I did the same thing for 4 years before she died.  Funny how life works.  More later...


Hey there, gentleman, you are a wonderful husband.

So what can you do about your isolation? Anyway to reach out into the world and see other people? Join a toastmasters group and learn to write a short speech. Take up bowling. Go sing baritone in a church choir. Call up your old buddies and watch a sports event. She can be left alone for short periods, right? 

You're very philosophical about all of this, and i just wish for you more fun, more spontaneity, more people... just a thought.

 

glad you wrote, though. another take on the caregiving for a spouse situation, and the rarer voice of a husband to boot.

 

write more?

jane

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As a nurse I think I should have a better grip on caregiving for my husband but I find myself freaking out over not being able to solve his problems and then I freak over not being able to let it go!  Dementia is such a miserable disease for the caregiver as well as the individual suffering from it.  There are times when my husband knows who I am and calls me by name, and other times when he can only speak Greek, his native language.  Unfortunately I don't speak a whole lot of Greek!  Any suggestions on letting go of the guilt over not being able to make it better.  I know I can't make it better but when I've tried all my nursing tricks and things don't change, UGH!  I feel it so inept!  Again, I know I'm doing the best I can I just need to vent!  Thank you for listening!

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@lb50258545 wrote:

As a nurse I think I should have a better grip on caregiving for my husband but I find myself freaking out over not being able to solve his problems and then I freak over not being able to let it go!  Dementia is such a miserable disease for the caregiver as well as the individual suffering from it.  There are times when my husband knows who I am and calls me by name, and other times when he can only speak Greek, his native language.  Unfortunately I don't speak a whole lot of Greek!  Any suggestions on letting go of the guilt over not being able to make it better.  I know I can't make it better but when I've tried all my nursing tricks and things don't change, UGH!  I feel it so inept!  Again, I know I'm doing the best I can I just need to vent!  Thank you for listening!


Happy to listen. Thank you for posting!

 

It is interesting, and completely understandable, that as a brain slowly unravels, it returns to its first words, first language, first awareness. I am a social worker with a bunch of clients who have dementia, and they come from all over the world. The English they knew is the first thing to go. Often these immigrants know several languages, and English is the final one they learned. Slowly, it all rolls back to the first language. Which leaves all us English-only speakers baffled, and using interpreters. 

 

I wonder if you could link up to other nurses who work in geriatrics, or in eldercare or dementia care?  There's obviously ALL KINDS of nursing, including pediatrics, psych, you name it. The kind of 'tricks' you know might not be the most relevant tips. Just guessing. 

 

Have you read the 36 hour Day? It's a book that describes what it's like to live with a person with dementia. Totally captures it.

 

Keep writing!

 

Jane

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Reading all the stories has helped me already. Thank you all for sharing.

Somehow it just never dawned on me that I'd be in this place. My husband is 74 and I am 59. We have worked together in our own business for 19 years, gradually moving it all online. He had what we thought was a simple surgery Mar 2015. It wasn't. 2 more surgeries and now he is at the place where he can barely walk more than 10 ft. He complains of pain constantly.

He had 2 older boys who rarely visit. Even tho we've been married for years, they have never accepted me or shown me the slightest amount of respect or acknowledgement. He and I adopted an older son, so we have one child together.

So here is my dilemma - we had a very active life before. We traveled a lot. We went out to concerts, movies, the dog park several times a week. I'm now doing everything in the business and caring for him. He argues with me about little things and I should stop and talk to him, but I am exhausted all the time. I rarely do anything fun. I cook, clean, care for him and work. I heard him complaining about me to one of his boys and that is like the last straw. He can't live by himself. His two oldest sons barely have anything to do with him. Our son is 24 and just starting his life but he has said he would take him if need be.

He lives 800 miles away. I would like to consider moving there because I know he would help out, I'd get to see my grand daughter (who is 3) and it wouldn't be so isolating for me like it is. My husband won't hear of it.

I think the issue for both of us is that we keep waiting for him to get better. We've both always been the strong and active ones and now he's not and I feel some days like I'm just hanging on.

In a few hours my husband is getting on s plane to go see our son for a week. I hope that the trip isn't too hard. It's s direct flight and we have wheelchairs on both ends. I am grateful for the week off. I tried to take a vacation myself a month ago but he couldn't care for himself as well as we thought and even with someone coming in daily I had to fly back for an emergency after 4 days.

My situation seems so much easier than others that have posted. All I can say is that I never wanted to be a caregiver. I totally suck at it. but if I don't do it, I don't know who other than our son would. Our son had such a tough start to his life that I want him to enjoy his time now and build a life for his daughter. He has full custody of her.

It does help to vent. Thank you
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dk8336215 wrote:
Reading all the stories has helped me already. Thank you all for sharing.

Somehow it just never dawned on me that I'd be in this place. My husband is 74 and I am 59. We have worked together in our own business for 19 years, gradually moving it all online. He had what we thought was a simple surgery Mar 2015. It wasn't. 2 more surgeries and now he is at the place where he can barely walk more than 10 ft. He complains of pain constantly.

He had 2 older boys who rarely visit. Even tho we've been married for years, they have never accepted me or shown me the slightest amount of respect or acknowledgement. He and I adopted an older son, so we have one child together.

So here is my dilemma - we had a very active life before. We traveled a lot. We went out to concerts, movies, the dog park several times a week. I'm now doing everything in the business and caring for him. He argues with me about little things and I should stop and talk to him, but I am exhausted all the time. I rarely do anything fun. I cook, clean, care for him and work. I heard him complaining about me to one of his boys and that is like the last straw. He can't live by himself. His two oldest sons barely have anything to do with him. Our son is 24 and just starting his life but he has said he would take him if need be.

He lives 800 miles away. I would like to consider moving there because I know he would help out, I'd get to see my grand daughter (who is 3) and it wouldn't be so isolating for me like it is. My husband won't hear of it.

I think the issue for both of us is that we keep waiting for him to get better. We've both always been the strong and active ones and now he's not and I feel some days like I'm just hanging on.

In a few hours my husband is getting on s plane to go see our son for a week. I hope that the trip isn't too hard. It's s direct flight and we have wheelchairs on both ends. I am grateful for the week off. I tried to take a vacation myself a month ago but he couldn't care for himself as well as we thought and even with someone coming in daily I had to fly back for an emergency after 4 days.

My situation seems so much easier than others that have posted. All I can say is that I never wanted to be a caregiver. I totally suck at it. but if I don't do it, I don't know who other than our son would. Our son had such a tough start to his life that I want him to enjoy his time now and build a life for his daughter. He has full custody of her.

It does help to vent. Thank you

______________________________________
When i hear that one member of a family says 'i won't hear of it' to another, i think, REALLY? WHO GIVES YOU THE RIGHT TO MAKE UNILATERAL DECISIONS ABOUT OUR LIFE TOGETHER???
That's what i think. I'm not saying you should move to be closer to your son, but i do think your husband needs to be your partner in life and not the boss with veto power. You're doing an immense amount of work... FOR HIM. You could make a unilateral decision to stop caring for him. I know you won't but... you COULD.
So how is this week off going for you? I hope it's the breather you need.
You know what i think might be helpful? Couples counseling.
What do you think about what i've said? Seems like a marriage in trouble, to me. And sons at the ready... and if his sons aren't then they should be. and maybe they will be if you do less...
Write more?
Jane

 

 

 

 

 

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I am having much the same problem-my husband had a major stroke-in the logic, cognitive area of his brain. Some days he is quite good-sense of humor, etc. Other days he is extremely impatient and sarcastic if I don't understand what he is saying immediately. He feels that he can take care of himself, but needs reminders about his carb intake (diabetes 2). He would refuse to have a caretaker other than myself come in because he is "able to take care of himself" I'm in the process of waiting for something bad to happen or for his condition to worsen so that it's obvious he needs help. 

 

Mars
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@mv6544509 wrote:

I am having much the same problem-my husband had a major stroke-in the logic, cognitive area of his brain. Some days he is quite good-sense of humor, etc. Other days he is extremely impatient and sarcastic if I don't understand what he is saying immediately. He feels that he can take care of himself, but needs reminders about his carb intake (diabetes 2). He would refuse to have a caretaker other than myself come in because he is "able to take care of himself" I'm in the process of waiting for something bad to happen or for his condition to worsen so that it's obvious he needs help. 

 


Is there ANYONE ELSE that your husband would listen to? A brother, a minister, a buddy from work or from the Army? His mother? There are lots of people who have serious impairments of all sorts, and are in serious denial about needing help. In fact, my entire career as a medical social worker and counselor is about helping people to see that accepting help actually PRESERVES independence.

 

Sigh. Hard work. 

 

What do you do to stay sane?

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I do Jazzercise twice a week, and go out to my horse stables once a week. I have a bad shoulder so have to take care of that with massage-not as relaxing as it sounds. 

 

You asked about someone talking to him-he is the oldest in his family, was always very confident and self-reliant, so is not willing to listen to anyone.  We do go to a therapist, but my husband tends to ignore his suggestions. I think my husband doesn't feel the suggestions apply to him. He feels he is getting better and improving - I see him as at a plateau and getting worse with his impatience and his suspicious nature. 

 

I have been looking for a support group for stroke victims and their spouses, but our community does not seem to have many options.

 

Thanks for listening. 

 

Mars
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I'm melting down and have no one to turn to so I'm writing.  Thank you all in advance for reading.  I am feeling so very, very lonely.  My husband had a TIA - Transient Ischemic Attack, or a mini stroke or his disease has hit a major part of his brain last Sunday.  He has lost his ability to stand up, his left arm and hand are weak.  The good news is my husband is taking this all in stride, he's not upset, depressed or freaking out.  On the other hand I am freaking out and so scared as to what's going to happen next.  I try not to dwell on it but it's in my face 24/7.  I'm continuing to care for him without increasing the amount or number of people coming into our home.  I worry about transferring him by myself at times but even with another person there's no guarntees he'd be safe.  So I do the best I can do.  I'm also making sure I'm staying safe and not hurting myself doing his care.  I would just like it if someone would call once in awhile and ask me how it's going.  But it seems to only way I'm going to talk to anyone is if I call them.  And I don't call because I don't want to depress someone else.  I would just like to stop feeling so darn scared all the time!  I'd like to feel safe again!  I know things will change, they always do, I just don't know when!  But I have no control over what will happen next.  I think part of my problem is I grieving his losses, my loss and his potential death.  I pray for strength, I pray for a peaceful end for my husband.  Thank you all for reading and any insight.  I hope thngs are going well for you!

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Is your husband having physical therapy and stroke rehab? We found the stroke rehab to be very helpful, although it can be a very slow process before seeing improvement. Call friends and ask them to pick up groceries or come for a cup of coffee if his status will allow that. Friends who have taken care of their parents or their spouses have great insight and can help. All the best. 

Mars
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Hi Pam, I know the feeling so here's a big hug from me.
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Hi Everyone,  Well my husband had a vaso-vagal episode yesterday and it scared the stuff out of me!  He has had these episodes in the past but it's been well over two years since his last one.  The episode consist of his losing consciousness, he appears to stop breathing, he becomes very sweaty, then cold and clammy and his heart rate gets very slow.  Fortunately he was sitting in his chair so he didn't fall or get hurt and I knew what to do for him which was just make sure his airway was clear and kept him warm, BUT it is so frightening!   And it brings our mortality right into the fore front of my mind!  There's really nothing that can be done for these episodes, the physicians don't know what causes them, it's ALL just so darn frustrating!  Fortunately today was a good day, he did well no further episodes, Thank Goodness!  I'm just trying to live in the moment and not think about what the future may bring!  Thank you for reading!

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