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

Re: Is anyone taking care of a spouse?

Message 41 of 275 (2,159 Views)

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

Info Seeker
Posts: 3
Registered: ‎09-13-2016

Re: Is anyone taking care of a spouse?

Message 42 of 275 (2,172 Views)
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
Silver Conversationalist
Posts: 44
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 43 of 275 (2,178 Views)

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!

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

Re: Is anyone taking care of a spouse?

Message 44 of 275 (2,331 Views)

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

Silver Conversationalist
Posts: 36
Registered: ‎08-28-2016

Re: Is anyone taking care of a spouse?

Message 45 of 275 (2,263 Views)

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

Re: Is anyone taking care of a spouse?

Message 46 of 275 (2,248 Views)

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

Silver Conversationalist
Posts: 36
Registered: ‎08-28-2016

Re: Is anyone taking care of a spouse?

Message 47 of 275 (2,258 Views)

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
Silver Conversationalist
Posts: 36
Registered: ‎08-28-2016

Re: Is anyone taking care of a spouse?

Message 48 of 275 (2,249 Views)

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

Re: Is anyone taking care of a spouse?

Message 49 of 275 (1,987 Views)

c611836h wrote:

I also am taking care of  my  spouse. Yes it is very challenging. My wife suffered 2 strokes that left her right side paralyzed and  very disrupted speech.  After over 96  days in rehab and  now she is home  (still getting therapy in house). I am now  unable to work  because of it.   trying  to balance out her meals, administering  medications, helping with  her therapy,   bathing, dressing and  going to the bathroom, it can get very overwhelming  at times. But i hold on to the love  that i have for her  and  just keep doing  what I do for her.  I wont  complain because i know that GOD spared her and  this is a nother test in life for the both of us. I believe that she  will  be able to walk again  it  will just take some time. As for me i am just trying  to find  ways to keep the income  going  seeing that i was self employed our  income has come to a stop.  A  friend of mine  told me to go to this web site called Go Fund Me  and  set up donation fund  to help  support our situation. So I have tried it  and  so far it seems to be  working out .. but  over all  yes  there are days that i get  very  tired  and  no I really  dont have  any  help. Our  children live  very far away  and  have their own families to deal with. So I  dig deep and  encourage myself and remind my self why I love this woman so much  and  then it makes it  all  worth  while 


Hi there, wonderful husband,

 

You certainly take your vows seriously. Now that she's home, you realize that it's MORE than a full time job but there are no breaks. You love her and it shows. You dig deep and you do it one more day. One day at a time. 

 

GoFundMe is a wonderful source of help. I'm glad you're gathering some contributions.

 

She may well walk again. I'm guessing though that she won't be 100%. I hope I'm wrong. Right now, it sounds like a lot of pressure on you, a lot of work. When you can see a little bit further down the road, there are steps you can take to protect both of you, financially. And protect YOUR health since you may be pushing really hard but at some point you may poop out. Even temporarily. And you don't want to get sick.

 

There are a couple of steps you can take and neither are free but the people you'd consult could look at your assets, your income, and the medical future when it becomes a little bit clearer (perhaps in another 6 months or so). Either an eldercare lawyer or a geriatric care manager can assist you both in looking at what you have and what you need to continue her care and protect your health as well. 

 

Your wife is one lucky woman. And you are a lucky man, since based on your devotion, i'm assuming you have a fulfilling marriage. What a blessing.

 

How do you cope with the biggest challenges? How do you dig deep?  A number of folks talk about their dogs being great sympathetic buddies. What works for you?

 

Jane

Info Seeker
Posts: 3
Registered: ‎09-13-2016

Re: Is anyone taking care of a spouse?

Message 50 of 275 (1,979 Views)

I also am taking care of  my  spouse. Yes it is very challenging. My wife suffered 2 strokes that left her right side paralyzed and  very disrupted speech.  After over 96  days in rehab and  now she is home  (still getting therapy in house). I am now  unable to work  because of it.   trying  to balance out her meals, administering  medications, helping with  her therapy,   bathing, dressing and  going to the bathroom, it can get very overwhelming  at times. But i hold on to the love  that i have for her  and  just keep doing  what I do for her.  I wont  complain because i know that GOD spared her and  this is a nother test in life for the both of us. I believe that she  will  be able to walk again  it  will just take some time. As for me i am just trying  to find  ways to keep the income  going  seeing that i was self employed our  income has come to a stop.  A  friend of mine  told me to go to this web site called Go Fund Me  and  set up donation fund  to help  support our situation. So I have tried it  and  so far it seems to be  working out .. but  over all  yes  there are days that i get  very  tired  and  no I really  dont have  any  help. Our  children live  very far away  and  have their own families to deal with. So I  dig deep and  encourage myself and remind my self why I love this woman so much  and  then it makes it  all  worh  while