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Silver Conversationalist
Posts: 40
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 71 of 249 (2,378 Views)
Hi Jane,

Things are much better, Thank You! You asked, "How do you keep going?" I don't know, all I know is I get up each day and do what I have to do and pray that my husband will have a good day and so will I. I know that this isn't forever, and even if it is I can't stop. I love him and want what's best for him. I worked in a nursing home and watched as the care deteriorated. I had him in that same home 3 years ago for 9 days and he gave up all hope after nine days. I thought he was going to die so I brought him home. But with good care, love, and an excellent dementia specialist he has done very well. His disease is taking it's toll, as is age but we are in this together and he knows that and feels safe. How can I take that away from him? Besides what else would I do with my time? All kidding aside, I can't imagine him being alive and not being with me. So we go through each day with each other and do our best to make it good! I hope all is well with you! Thank You for reading!
Regular Social Butterfly
Posts: 409
Registered: ‎04-28-2014

Re: Is anyone taking care of a spouse?

Message 72 of 249 (2,511 Views)

ozzma wrote:

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.


Hi Amber,

I haven't been on this site for a while, and i'm moved to respond to your post. You posted it almost a month ago. I'm so sorry he had a stroke. You are now in a totally different marriage, aren't you? and you grieve for the loss of what you once had.  It is important, i think, that you allow yourself to do that, to grieve what is really gone. Terrible as it feels, since he's still there with you. but what you had is deeply different. 

 

My hope is that he will recover even more, and regain his sense of humor so that you can tease and joke, and he'll be right there with you, laughing.

 

Might not happen, but one can hope.

 

Are there stroke survivor support groups in your area? or even simply caregiver support groups. there is all kinds of caregiving, but there are also lots of similarities between one family caregiver and another.

 

thank you for writing. i hope it's gotten better since you've written. that you're feeling more accepting of all of your feelings. that he's improved. that perhaps your kids are coming by again. "Better" as you define it. I hope it has gotten better.

 

write more?

 

Jane

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

Re: Is anyone taking care of a spouse?

Message 73 of 249 (2,088 Views)

lb50258545 wrote:

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!


Hey there,

 

You posted this about a month ago, and i am wondering how things are going now? yes i hope you can forgive yourself and move on. that's a hard thing to do isn't it? You obviously are dedicated to taking excellent care of him, and as we all do, you keep learning the hard way what your limitations are, and his. I hope the lift is being used more, to save your back as well as to keep him safe. You have a lot going on.

 

How do you keep going?

 

So glad you write here. I can tell you have a strong, positive spirit.

 

Carry on!

 

Jane

Info Seeker
Posts: 2
Registered: ‎05-29-2016

Re: Is anyone taking care of a spouse?

Message 74 of 249 (2,071 Views)

Congratulations on finding a health care provider who suggested a nutritional means of improving your husband's situation.  I wish someone would have had such helpful suggestions for my husband when he was sick. All we got were tests and tests an presriptions and prescriptions. I will say though that you are probably the only person who can persuade your husband to get his blood drawn. He is more dependent on you than probably either of you realize. My only other suggestion is to ask for help before it's so late that caring for him is more than you can handle. There are available respite day programs with Senior Care that would give you a full afternoon off once a week so your mind can rejunivate. Do take care of yourself !  It is not selfish, it's essential for both of you.

Silver Conversationalist
Posts: 40
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 75 of 249 (2,109 Views)

This has been a truly emotional day for me and I don't know why!  My husband's physical health seems to have improved but I know how this situation works.  The ups and downs of this disease are frustrating at best!  I contacted a chiropractor in North Carolina who deals with brain trauma and he suggested increasing the amount of fat for my husband so I have and I do believe it has made a difference.  My husband has been much more awake in the last month than he was before, of course it could be that with the weather change that caused the awakeness.  I don't know.  Anyway I spoke with the chiropractor again and now he would like to see my husband's blood work.  So I called his doctor up here and my husband is to have his blood drawn tomorrow.  I'm hoping he will let them do a blood draw, but honestly I know it's making me anxious because my husband just doesn't respond well to such things.  Hoping for the best!  Thank you for reading!

Info Seeker
Posts: 1
Registered: ‎04-22-2015

Re: Is anyone taking care of a spouse?

Message 76 of 249 (2,230 Views)

Hi!  I am taking care of my spouse.  We will be married 60 years in 2 days.  My husband has had 2 strokes and a seizure since April of 2014.  His personality has changed and I understand this can happen after a stroke.  Like I just read in the comment above mine--your husband has an opportunity to get help, but won't do it.  That's what's happening with my husband, he doesn't think it will help him and I find this very frustrating.  I understand your feeling of loneliness.  When I married my spouse it was for better or worse and I just trust God to help me everyday.

Silver Conversationalist
Posts: 40
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 77 of 249 (2,187 Views)

Hi All!  Well it's another holiday.  We do not have children so this particular holiday is no big deal for us.  It's just hard to be alone so much!  But doing the best we can and hanging in there!  I keep telling myself it will get better.  I pray it does.  I hope your day is going smoothly and things are well in your world!  Happy Mother's Day!

Conversationalist
Posts: 10
Registered: ‎01-09-2016

Re: Is anyone taking care of a spouse?

Message 78 of 249 (2,063 Views)
I know how you feel. It is the same exact thing withy husband. His dementia is frontotemporal, so no meaningful conversation or interest in any activities. He does not even dance anymore. This was what he loved. So sad. Pacing is all he does and he burns many, many calories. I just feed him frequently. Medication helps with the sleeping, but not so much with the pacing. Hang in there!
Silver Conversationalist
Posts: 40
Registered: ‎07-14-2015

Re: Is anyone taking care of a spouse?

Message 79 of 249 (1,991 Views)

Hi Amber, I'm sorry you are having this experience.  It is difficult at best to care for someone and worse when that someone is the person you love and they don't respond the way they have in the past.  It sounds like your husband's physician didn't explain to you or your husband the possible personality changes as a result of your husband's stroke.  You may want to ask the physician about that as it may provide you with some insight as to why your husband behaves the way he does.  I do hope you have some time to get away from your husband and relax.  I know it can be difficult but it is so important.  You need to take care of you, because if you don't what will happen to your husband and who will take care of you?  This is a wonderful sight to express your frustrations, no judgements and any offered advice comes from a place of love and understanding!  I hope things are getting better hope you!  Take Care of you! 

Conversationalist
Posts: 10
Registered: ‎01-09-2016

Re: Is anyone taking care of a spouse?

Message 80 of 249 (1,902 Views)
I'm so sorry that you are going through this, Mike. Please speak with her doctor. The aggression is part of the dementia. However, you need to me sure that you remain safe. Getting assaulted on a regarding basis is not good. There are medications that are designed to control the aggression so that your wife stops attacking you. It might also help lessen her desire to order you around. You are not failing in taking care of your wife. The dementia is just getting the upper hand right now. Your sanity and well-being are important as well! Ask the doctor if your wife should be in counseling with a psychiatrist who treats people with dementia and then ask for counseling for yourself as a caregiver. Good luck, Mike! You are in my thoughts!