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Re: Is anyone taking care of a spouse?

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Message 41 of 282

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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Re: Is anyone taking care of a spouse?

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Message 42 of 282

..."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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Re: Is anyone taking care of a spouse?

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Message 43 of 282
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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Re: Is anyone taking care of a spouse?

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Message 44 of 282
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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Re: Is anyone taking care of a spouse?

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Message 45 of 282

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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Re: Is anyone taking care of a spouse?

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Message 46 of 282

 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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Re: Is anyone taking care of a spouse?

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Message 47 of 282
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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Re: Is anyone taking care of a spouse?

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Message 48 of 282

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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Re: Is anyone taking care of a spouse?

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Message 49 of 282
for my wife I used a very unique combination of essential oils for her muscle paralysis for her stroke issue. We used
Rosemary, 30 drops
Lemongrass, 30 drops
Lavender, 30 drops
About 1/4 cup fractionared coconut oil and distilled water. put it in a small plastic spray bottle and spray it on the the areas and rub it in ( massage)
this combination activates muscle memory and gave her function of her arm and leg again . I also found the best oils to use are from the company doTerra . it is up to you if you want to give it a try . i am just making a suggestion based upon what i have dealt with. We saw a response the very same day
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Re: Is anyone taking care of a spouse?

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Message 50 of 282

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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