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Silver Conversationalist
Posts: 42
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 21 of 265 (1,305 Views)
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!
Frequent Social Butterfly
Posts: 167
Registered: ‎05-04-2011

Re: Is anyone taking care of a spouse?

Message 22 of 265 (1,302 Views)

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

Silver Conversationalist
Posts: 42
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 23 of 265 (1,309 Views)
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!
Bronze Conversationalist
Posts: 29
Registered: ‎03-14-2013

Re: Is anyone taking care of a spouse?

Message 24 of 265 (1,446 Views)

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

Frequent Social Butterfly
Posts: 167
Registered: ‎05-04-2011

Re: Is anyone taking care of a spouse?

Message 25 of 265 (1,561 Views)

..."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

 

 

Silver Conversationalist
Posts: 42
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 26 of 265 (1,574 Views)
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!
Info Seeker
Posts: 3
Registered: ‎09-13-2016

Re: Is anyone taking care of a spouse?

Message 27 of 265 (1,425 Views)
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
Silver Conversationalist
Posts: 42
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 28 of 265 (1,388 Views)

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!

 

Regular Social Butterfly
Posts: 409
Registered: ‎04-28-2014

Re: Is anyone taking care of a spouse?

Message 29 of 265 (2,206 Views)

 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

Silver Conversationalist
Posts: 42
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 30 of 265 (1,843 Views)
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.