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Info Seeker
Posts: 1
Registered: ‎05-03-2016

Re: Is anyone taking care of a spouse?

Message 91 of 257 (1,883 Views)

I'm amber. I really didn't think about myself as a caregiver much until recently. My husband had a stroke on Dec 23rd. He was unaccounted for for over 19 hrs after it and the Doctors said his prognosis wasn't good. I was told he'd be fed through a tube, not recognize me, not have his mind or recover his speech. They expected him to die. I was in another state and rushed to get to him. None of the expectations they gave me happened. 4 months later, he's walking, talking, thinking, and regaining his right side functions is his total focus. He's so close. But he is limited and it puts everything on me. I miss being his wife. His health is under control - from his B/P to his blood sugar, to his cholesterol. He is so much better. Our biggest problem is that he won't exercise like he's supposed to, he has right side weakness and his face has droop. He works his arm. He perks right up during therapy and acts like he can do everything. He walks on his own with me just watching. The biggest thing for me is I never see his smile anymore. I never get a hug. I seldom get thank yous. When I tease like we would do with each other, he gets his feelings hurt and cries. The last thing I ever want to do is hurt him. Since March, my kids don't even check in anymore. The line between caregiver and wife is so convoluted. I find myself crying a lot. Nothing is really wrong. I just walked through the house and realized i didn't take my medicine today. I left my breakfast on the table. i didn't eat lunch. I made dinner and it was my first meal of the day at 9pm. My bloodwork is worse than Steve's and HE HAD the stroke...sigh. Yes, I am caregiver to my spouse.

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

Re: Is anyone taking care of a spouse?

Message 92 of 257 (1,878 Views)

What an awful day we've had!  I attempted to toilet my husband by myself and we both ended up on the floor with me falling on him!  Thank God neither of us got hurt!  Unfortunately I think he was so scared he couldn't even rollover onto his back so I could get him up with the lift so I had to call 911.  The paramedics really didn't seem to know what to do so I walked them through getting the sling behind him and then I lifted him with the lift.  I am so upset.  The last thing I want to do is hurt my husband, he's got enough to deal with.  And I have no one to talk to other than my therapist whom I contacted.  My friend showed up shortly after the paramedics and she was silent about the whole thing.  That really hurt me.  I know I shouldn't have tried to walk him myself, but he's been doing so well I thought that we could actually do it!  But this incidence has really driven home the need for me to use the lift whenever I need to move him!  I so want him to have the best life possible, but I also need to be aware of my limitations!  Now I need to forgive myself and move on.  Thank you reading!

Info Seeker +
Posts: 3
Registered: ‎12-18-2010

Re: Is anyone taking care of a spouse?

Message 93 of 257 (1,897 Views)

I am so very sorry I haven't gotten back to you sooner.  My beautiful wife passed away on April 4th.  I have been in a fog for a long time and finally am now coming out of it.  Stay close to your husband.  Reassure him you will be with him always, death will only separate your bodies, but regardless of the future, you will always love him.  That something time or circumstance will never change.  I focused on my wife and making her passing as smooth and peaceful as possible.  I also focused on her soul and brought in our parish priest to give her the anointing of the sick.   I prayed the different prayers for the dying and at the moment of her death, I prayed my final prayer.  Prayer was not only a benefit to my wife, but it kept the family focused.  Once I saw my wife loaded into the hearse, I got in my car and travelled to a secluded spot and cried.  I have never felt such pain and sorrow.  I went into such a deep abyss.  My sister in law visited me the next day and we both grieved together.  She was so instrumental in getting me out of that abyss and I was able to get through the funeral appearing to be that strong figure everyone expected.  We still text and keep each other propped up.  I can't tell you how to deal with the pain because I'm still trying to deal with it now, but I have come out of the fog now and I owe most of it to my sister in law.  Find a family member so you can both lean on each other.  I know now that the pain will never go completely away, it just becomes less.  But that's OK too, you and I have an endless supply of wonderful memories to lessen the pain.  God bless you in your time of grief and God has already blessed your husband by giving him you as his wife.  I will pray for you both.

 

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

Re: Is anyone taking care of a spouse?

Message 94 of 257 (1,873 Views)

lb50258545 wrote:
Hi Jane,

Thank you for your suggestions. We do have an electric bed, it certainly does save our back when providing care for my husband. Unfortunately my husband doesn't have the ability to follow instructions, he tries and I appreciate that but basically it's a matter of doing for him. As far as a "lift recliner" I thought about getting one but haven't yet. Currently my husband is going to bed early to late afternoon so sitting up and sliding in the chair is becoming less and less an issue. When I do his care alone I get him into the his chair with a Hoyer lift and usually manage to get him pretty well upright and I can usually pull him back a bit. There's always new challenges, it's just a matter of being adaptable. Unfortunately there isn't a neighbor I can call on and that's okay. I'm learning to adapt and make the best of our situation!

i forgot about one more resource. 911!  They do a service involving "Manpower" which simply means they will come to the home and lift a sick person off of a floor or around a bed or wherever he or she is 'stuck.'  They're not supposed to do this routinely, but in a pinch, they will come and lift someone safely and carefully. I did this recently for a patient and i was amazed at how willing and fine the firefighters were with the job. They seemed bored but perfectly willing. They moved a 94 year old woman from one bed to another as we moved her to another room in a facilitiy. They used a gurney and were super gentle. She was fine through the whole thing, and her family was relieved, as was i!  Your taxpayers dollars at work!

 

You have a great attitude!

 

Keep sharing... we all learn from each other...

 

Jane

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

Re: Is anyone taking care of a spouse?

Message 95 of 257 (1,868 Views)

mg50694312 wrote:

My dear wife passed away Monday at 3:00 PM.  We were all with her, including her brothers and sisters.  We prayed the Chaplet of Devine Mercy during her passing.  The poem you gave me as been very comforting, thank you so very much.  I have never felt such pain as I do now, but I know it will get better with time.  The funeral mass is Friday.   It will then be time to say goodbye as her soul departs and to fulfill my promise to care and love our grandchildren.  I will never let them forget their beloved Nana.


I am so so sorry. I bet it was a beautiful, meaningful mass for you and your family. And now it's Sunday. And then it will be Monday. And the world will continue to go on, and you'll feel like, how dare it? Because there is a hole in your heart.

 

We have a grief community here, although for the most part i've been the only one posting. Perhaps you can put something out there. It's at the end of the thread found at www.aarp.org/griefcommunity.  I was just at a bereavement workshop and one of the suggestions was to tell the story of the ending of the life, to write it out, either for oneself (as in a journal) or to read to a loved one. Or even in a blog or community like this one. There's something very catharctic about remember every detail you can, about her breathing, say, about something someone said, about how you counted her breaths... if you want to.

 

Thank you for sharing your journey of caring with us. 

 

She is with you wherever you are.

 

Jane

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

Re: Is anyone taking care of a spouse?

Message 96 of 257 (1,875 Views)
Dear mg, I'm so sorry to hear about your wife's passing. You did an amazing job caring for her and know she loves you for all you did and being there! I'm sending you lots of prayers and positive energy to you and your family. Now it is time to take care of you. In time, I hope you can come to once again enjoy life, your family and grandchildren! God Bless You! lb
Silver Conversationalist
Posts: 42
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 97 of 257 (1,847 Views)
Hi Jane,

Thank you for your suggestions. We do have an electric bed, it certainly does save our back when providing care for my husband. Unfortunately my husband doesn't have the ability to follow instructions, he tries and I appreciate that but basically it's a matter of doing for him. As far as a "lift recliner" I thought about getting one but haven't yet. Currently my husband is going to bed early to late afternoon so sitting up and sliding in the chair is becoming less and less an issue. When I do his care alone I get him into the his chair with a Hoyer lift and usually manage to get him pretty well upright and I can usually pull him back a bit. There's always new challenges, it's just a matter of being adaptable. Unfortunately there isn't a neighbor I can call on and that's okay. I'm learning to adapt and make the best of our situation!
Conversationalist
Posts: 8
Registered: ‎01-27-2016

Re: Is anyone taking care of a spouse?

Message 98 of 257 (1,638 Views)

My dear wife passed away Monday at 3:00 PM.  We were all with her, including her brothers and sisters.  We prayed the Chaplet of Devine Mercy during her passing.  The poem you gave me as been very comforting, thank you so very much.  I have never felt such pain as I do now, but I know it will get better with time.  The funeral mass is Friday.   It will then be time to say goodbye as her soul departs and to fulfill my promise to care and love our grandchildren.  I will never let them forget their beloved Nana.

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

Re: Is anyone taking care of a spouse?

Message 99 of 257 (1,710 Views)

lb50258545 wrote:

So I learned yesterday that one of the ladies who comes into our house to help me care for my husband can no longer help pull him up in the chair.  This doesn't sound like a big deal but it is.  My husband doesn't have the ability to push himself all the way back in the chair and I don't have the physical ability to pull him back all the way sometimes either.  He is becoming more and more debiliated and I'm having trouble coping with his loss.  I have other ladies I can ask to help, it's just things changing again, it gets so frustrating.  It seems about the time I feel I have everything under control, BANG!  Something happens.  It would be easier if I had family who cared but I don't.  Yes, I have friends and I do share with them but I'm careful not to over share because I want to keep my friends.  I also have a therapist and that helps but there are times like now Sunday morning when stuff just hits me and I just feel overwhelmed and wonder how long can I go on?!?!  So I write on here and I really appreciate your reading and your understanding.  Thank You!  I'm off to get my sweetie up for the day!  I hope your day is a good one!


This business of lifting him in his chair is a tricky one. I have 2 suggestions. One is to get a chair that has a lift in its seat. not only are they recliners but the seat pushes up and helps a person to stand. A marvelous invention! If you can't lift him up while he's sitting in the chair, why not get him up and situated again in it. Is there any surface you can put on the chair that will keep him from sliding down again? 

 

Secondly, can you schedule someone strong to come and help you get him up at a crucial time of day? Like, a neighbor who comes home at 6pm: would they agree to come over and lift them with you? The last lift of the day before you get him up and into bed?

 

Oh and btw, a semi electric hospital bed is sometimes covered by Medicare, and can come in super handy to get someone weak in and out of bed. you lower the bed, lift the head of it with the touch of a button, use the side rails to get him to grasp them, swing his legs down.... really helps your back.

 

what solutions have you come up with?

 

Jane

Valued Social Butterfly
Posts: 7,907
Registered: ‎08-18-2008

Re: Is anyone taking care of a spouse?

Message 100 of 257 (1,708 Views)

@mg50694312

Many of us know exactly what is going on and what you are going through now and into the future.  It is hard, very hard.

 

My husband and I not only were man and wife for 38 years but we worked together too - so we were together 24/7 - that did not change after he became ill.  Once told that his life would be over soon, we turned to his bucket list of him participating in our daughters wedding and he did - wheel chair, O2 and all - but what a glorious day.  He rose and danced with our daughter to BB King "What A Wonderful World"; he picked the song.

 

Two weeks later, I was where you are today.  In our home just how we had planned it to be . . .

 

A life changing time, for sure, definitely not easy - time, faith, putting one foot in front of the other, one day at a time, day in and day out, has helped me these last 10-years,  In one way, it went by sooooo slowly but in another, those years trekked off pretty fast.

 

I, and I am sure many others who read your post today, will be thinking about you - yes, her journey is about to begin - as my beloved husband said before he entered that peaceful rest . . . .

" the greatest adventure of a lifetime ! "  That was just the kind of person he was.

 

I still miss him and always will but there have been many joys in those passing years and ones which I share with him in mind, heart and spirit.

 

May peace be with you and I leave you with a rememberance comfort -

 

If I should go tomorrow
It would never be goodbye,
For I have left my heart with you,
So don’t you ever cry.
The love that’s deep within me,
Shall reach you from the stars,
You’ll feel it from the heavens,
And it will heal the scars.
                                            Anon