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Re: Is anyone taking care of a spouse?

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Message 171 of 286

@lp0907 wrote:

Hi all, I been taking care of my wife 24/7 for the last three years. She was diagnosed with Lewy Body Dementia. It's been very challenging, and I have feel the loneliness and isolation that many of you have experienced.

Bless you all.


Hey there, lp, glad you joined us. If she has Lewy Body Dementia, does that mean she's youngish? (anyone under 70 is young in my book.) I bet it's challenging. What do you do to keep from going nuts?  Reach out beyond the isolation? Combat the loneliness?  Who else helps? Who's in your 'caregiving circle'?

 

Bless you, too.

 

Jane

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Re: Is anyone taking care of a spouse?

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Message 172 of 286

@kb4660 wrote:
This is my first time on this site. I am caregiver to my husband who has a brain tumor.... He has always "seen the glass as half empty" while I have always seen it as "half full". He can still bathe himself and get to the bathroom alone. I am responsible for nearly everything else. He gets frustrated that he cannot help. I get frustrated answering the same questions again and again and his indecisiveness. He panics if I am not near. I need some alone time. ...
Over the holidays our son and I had a disagreement because I remarked quietly to him, "See what I deal with." I mistakenly thought he was someone with whom I could share my frustration. Thankfully we talked it through and are on good terms again. Consequently, I remind myself to keep those comments and complaints from escaping my mouth.

My goals for today are to take a long walk, read two chapters, work on a quilting project, eat a healthy meal, and go to church.

Hey there, KB. Just a couple of thoughts.

 

One is, why was your son so offended? Good grief. Can he spend a day with his dad, just the two of them? Not as 'punishment' for his being overly sensitive, but just to WAKE UP about how much care his father requires. I'm just wondering. Seems like you took the brunt of a response that is not based in reality, and one you do not deserve.

 

Secondly, ever by movie tickets online? I use 'fandango.com' or 'movietickets.com' or 'landmarktheatres.com' because i go to a lot of independent movies. Once you buy on line, you're guarenteed a seat even if you arrive late. Takes the stress out of movie going, for me.

 

Thirdly, seems you have very reasonable and modest goals. I hope you were able to reach them!

 

So how did the day go?

 

Jane

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Re: Is anyone taking care of a spouse?

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Message 173 of 286

Hi all, I been taking care of my wife 24/7 for the last three years. She was diagnosed with Lewy Body Dementia. It's been very challenging, and I have feel the loneliness and isolation that many of you have experienced.

Bless you all.

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Re: Is anyone taking care of a spouse?

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Message 174 of 286
Hi kd! I too care for my husband, I can appreciate the frustrations of caring for someone you love and I understand why you felt it was safe to share your feelings with your son only to find your son unsympathetic. I'm sure your son has his own fears, insecurities and anxieties about his Dad and the care he requires. Caring giving is difficult, demanding and stressful on the whole family! Have you explored any options with your husband's doctor to have help come into your home. That may give you a couple of hours of break and give your husband someone to interact with for a couple of hours! I hope you got to take your walk, read your book and enjoy the rest of your goals for the day! Take Care! lb
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Re: Is anyone taking care of a spouse?

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Message 175 of 286
Hey Jenn,

I don't have any specific answers for you but I feel your frustration and anxiety! Is there any chance you could get someone to come in to sit with your husband for a couple of hours so you could get a break and do something for yourself? If you could set something up so you could get a daily break it might make life more tolerable! Maybe you could talk with his doctor about getting help the insurance would pay for. Good Luck! Sending you lots of prayers and positive energy!
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Re: Is anyone taking care of a spouse?

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Message 176 of 286
This is my first time on this site. I am caregiver to my husband who has a brain tumor. His first surgery was 10 years ago, another 4 years ago, and last summer they wanted to do another but he refused. The doctors are amazed and say he has lived three times longer than the average. A year ago I quit my job to care for him full time. He has a lot of difficulty walking, remembering, etc. In September he had a two week hospital stay as the result of a fall caused by a pill form of chemotherapy that affected blood cell creation. Physical therapy got him to the point he could come home but he quit the exercises after two weeks. He has always "seen the glass as half empty" while I have always seen it as "half full". He can still bathe himself and get to the bathroom alone. I am responsible for nearly everything else. He gets frustrated that he cannot help. I get frustrated answering the same questions again and again and his indecisiveness. He panics if I am not near. I need some alone time. Even when I tell him where I am going to be, he forgets and yells to see where I am. I can't count the number of times I have left my shower or other tasks to rush to him to see if he has fallen or some other emergency only to have him tell me he didn't know where I was.
Over the holidays our son and I had a disagreement because I remarked quietly to him, "See what I deal with." I mistakenly thought he was someone with whom I could share my frustration. Thankfully we talked it through and are on good terms again. Consequently, I remind myself to keep those comments and complaints from escaping my mouth.
Yesterday I suggested we see a movie. The movie had left and choosing another theatre and movie times were long waits, something he does not have the patience for. We returned home. On the way home he said he would have enjoyed a movie he previously said no to. I was down the rest of the day.

My goals for today are to take a long walk, read two chapters, work on a quilting project, eat a healthy meal, and go to church.
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Re: Is anyone taking care of a spouse?

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Message 177 of 286

I'm the primary caregiver for my husband, 47 diagnosed with relapsing remitting MS. In 2012 he had an episode of septi shock that left him with a permanent colostomy. He was in ICU on life support for several weeks after dialysis and a few surgeries. The resulting muscle memory loss put him in a wheelchair. He's become miserable to be around. He finally got over the depression, but our marriage never recovered. He's consistently treating me like an employee, and when he's not giving orders, he gets downright abusive because he's lashing out in anger. We've had a counselor doing home visits with him for the past 18 months. He's housebound for the most part, which mostly makes me the same. He has incredible anxiety and panics at the idea of being left alone for too long because he doesn't want to do anything for himself. (True that he can do little, but he doesn't want to do the little he can.) 

I'm pretty much at the end of my rope, wondering why it is I allow myself to be treated this way when the man I married would have screamed at me if I ever allowed anyone else to try it.

Hoping to find others that are hanging in there ...

Jenn

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Re: Is anyone taking care of a spouse?

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Message 178 of 286

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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Re: Is anyone taking care of a spouse?

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Message 179 of 286
Thank you so much for your comments- and God Bless you!!
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Re: Is anyone taking care of a spouse?

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Message 180 of 286
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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