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Re: Is anyone taking care of a spouse?

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Message 131 of 286
  • My wife is in hospice now and her life is slipping away.  She has been kept sedated until she crosses over.  God bless her and keep her.  She is no longer in pain.  She is sleeping comfortablly and peacefully.  The end is near and her journey is about to begin.  I've been caring for her for so long and we've never been separated.  All of a sudden, all the hours of caring for her are insignificant.  I would do it again if I could hold on to her for one more day.  My life is about to change, but I don't know in which direction and I don't know how I'm going to do it.
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Re: Is anyone taking care of a spouse?

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Message 132 of 286

I am having one of those days.  I don't know why I feel so yucky but I do!  I feel emotionally drained and physically exhausted and I'm doing everything I can to take care of myself!  My husband is now getting up at 10AM has breakfast, is helped to drink 5 glasses of fluid betwenn breakfast and lunch at 1Pm which doesn't always work.  If the aide and I can stand him up we toilet him and then get him resettled for lunch.  The aide leaves and I give him lunch and help him through that.  He's usually so tired by noon that he doses off before lunch, while on the commode and during lunch.  So after lunch I put him in bed.  He seems much more comfortable in bed and typically will sleep fairly soundly during the afternoon and through the night.  But not today.  Today he has been restless after sleeping for a good two and a half hours.  Throwing the covers off and pulling on the siderail.  I think he needs to poop as he hasn't for the last 3 days with today being the 4th.  I've given him Prune Juice a couple of days but no results yet.  I just feel so inept!  I know I'm doing all I can to keep him comfortable and healthy, I'm just frustrated.  I hate this disease.  And I know for a fact that things will change AGAIN!  As soon as he poops he will feel better, so will I and once again life will go on.  I know you don't have solutions, I'm not expecting any solutions actually.  I just needed an ear!  Thank you for reading!  I hope your day is going well!

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Re: Is anyone taking care of a spouse?

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Message 133 of 286
God Bless You and your wife mg. I know how hard it is to watch and wait with the one you love die. Sending you and her lots of prayers and positive energy! lb
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Re: Is anyone taking care of a spouse?

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Message 134 of 286
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Re: Is anyone taking care of a spouse?

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Message 135 of 286

My daughter, who is our only child, moved in with us along with her husband and two children.  She has really been helpful, especially in the administrative side.  She has been unable to fully accept the eminent death of her mother, they are very close.  She is coming to accept what is about to happen now and is beginning to talk about it.  My wife is now back in the hospital and has gotten worse.  All the end stage symptoms are showing.  She wants to go home until the end nears and then return to the hospital.  I will do everything I can to meet her wishes, but it so hard to watch her go through this.

 

Regarding faith, she taught me about the mercy of God.  Her faith is much stronger than mine and was working towards becoming a nun when I stole her away.  Our parish priest has always been close to us and is critical to her spiritual well being.  He told me once that her spiritual presence was unusually strong, that of most nuns.  She tells me she is not afraid of dying, but only wanted to see our 8 and 9 year old grandkids grow up and be part of their lives.  This is why she has kept on fighting.  

 

God has given us 43 wonderful years of marriage.  I promised her adventure before she said yes and I kept my word.  We grew up together, had many great adventures and have lived in many places.  We did live life to the absolute fullest.  Our daughter, the spittin' image of my wife, is working towards her PhD in Special Ed, so we have no complaints.

 

We will be talking hospice or palliative care before I take her home.  Oh how I will miss her until we reunite and have the greatest adventure of them all.  Thanks

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Re: Is anyone taking care of a spouse?

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Message 136 of 286

jMACFLINCOLN - I am so sorry. It takes a huge amount of patience and the frustration level is so high. Sometimes, I feel that I am losing most of my personality and becoming only involved in my spouse's care. And he is able to physically take care of himself. Do you have a college/university in your area that has a stroke therapy department? Sometimes they can help with therapy when medicare is limited. All my best wishes. Mars

Mars
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Re: Is anyone taking care of a spouse?

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Message 137 of 286

@ls9317715 wrote:

I have been with my husband all day every day since he had brain surgery in December of 2014.  Unfortunately there was an undectected problem  resulting in a stroke that took out his right arm and leg and left him with aphasia.  We were 5 weeks in the hospital, 2 months at a skilled nursing rehab, 1 month at an intense acute rehab and then home. Since May he's been in the hospital twice--once for seizures he began having, and again for a serious intestinal infection.  He gets minimal therapy with Medicare--and he needs total care from me 24/7.  He can't stand or walk, he can't do anything meaningful with his right hand/arm, can't use the bathroom,  and he still has problems finding words and expressing himself.  Being a caregiver is not a job/title anyone wants. Since I am an older person, I wonder how long I can keep going. It is very hard to do all that needs to be done everyday--and most things that can be ignored, don't get done.  There are days when I am so frustrated and angry--and I take some of it out on him knowing none of this is his fault.  The weight of the responsibility for decisions about him and his care are crushing because I take it so seriously and want to do the best for him. Nothing is simple anymore...I am grateful we have an adult son who lives with us and who's help I count on every day.  Someone else said that people not in our shoes don't undersatnd--and that is true.  I never could have imagined the existance we have now.  Nice to be able to "vent". 


You don't have to be his only caregiver.  You and your son could hire someone to help. Even one day a week for 4 hours would allow you time to get out of the house, get a haircut and go to Costco, and come home. 

 

Maybe your county has a respite care program. You can get financial help for caregiving to give you 'respite'. Find out what's available in your county or city at www.eldercare.gov and type in your zip code. 

 

What would really help you?

 

Tell us,

 

Jane

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Re: Is anyone taking care of a spouse?

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Message 138 of 286

Boy---I can relate to all of that.  There always seems to be something that happens just as you get into a sort of "groove".  It's very stressful and yes, the things that seem little really can get to you. Hope you had a good day.  : )

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Re: Is anyone taking care of a spouse?

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Message 139 of 286

Hi Pam...my husband also had a stroke so I know what your "life" is like.  It's been just over a year for me and it's the knowing that everyday will be filled with the things that must be done no matter how tired I am or how I'm feeling.

((((((((((((((((((((PAM)))))))))))))))))))))---  hope that hug helps. 

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Re: Is anyone taking care of a spouse?

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Message 140 of 286

I have been with my husband all day every day since he had brain surgery in December of 2014.  Unfortunately there was an undectected problem  resulting in a stroke that took out his right arm and leg and left him with aphasia.  We were 5 weeks in the hospital, 2 months at a skilled nursing rehab, 1 month at an intense acute rehab and then home. Since May he's been in the hospital twice--once for seizures he began having, and again for a serious intestinal infection.  He gets minimal therapy with Medicare--and he needs total care from me 24/7.  He can't stand or walk, he can't do anything meaningful with his right hand/arm, can't use the bathroom,  and he still has problems finding words and expressing himself.  Being a caregiver is not a job/title anyone wants. Since I am an older person, I wonder how long I can keep going. It is very hard to do all that needs to be done everyday--and most things that can be ignored, don't get done.  There are days when I am so frustrated and angry--and I take some of it out on him knowing none of this is his fault.  The weight of the responsibility for decisions about him and his care are crushing because I take it so seriously and want to do the best for him. Nothing is simple anymore...I am grateful we have an adult son who lives with us and who's help I count on every day.  Someone else said that people not in our shoes don't undersatnd--and that is true.  I never could have imagined the existance we have now.  Nice to be able to "vent". 

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