Is anyone taking care of a spouse?

[lb50258545]

Thank you mg for your response. I have lots to think about and have been praying and listening to my guidance.

[mg50694312]

I am caring for my wife now and I plan on keeping her at home, however both my parents ended their days in a nursing home and I found that talk is cheap until the time arrives and it is decision time.  We wanted to keep our parents at home, but you reach a point where a nursing home will better care of your loved one than we can.  When we placed our father in one he was glad we did it.  He told me he had a whole new audience to talk to.  In your case, you have it a lot tougher, you are on your own.  You need to balance his health and yours.  You have to stay healthy for him.  He will be in for harder times if you're out of commission.  The time you will spend with him in a NH will be of much better quality.  In addition, we found that the nurses really do care about our loved ones.  When my Dad passed away, his nurse cried.  Don't worry or feel guilt, measure this decision on quality of care and your own physical and mental health.  Both you and him want loving memories at the end.  Look around, God is with you.  Pray for guidance and strength, he will give you more than enough.  Whatever you decide, it will be the right decision.  God be with you in your time of need.

[lb50258545]

Well I've had a day and a half.  My husband who has Lewy Body Dementia has become increasing mobile and this afternoon stood up and started walking on his own.  He hasn't done that for at least 6 months.  The problem with him standing and walking independently is he has VERY limited endurance and of course when I helped him he couldn't make it to his chair and sat on the floor.  The good news is I can use the lift to get him off the floor.  Believe it or not this happened a second time when he wanted to use the commode chair and again couldn't make it back to his chair and again sat on the floor.  Thank goodness he didn't get hurt and neither did I.  But what I realized this afternoon is I can't make him better and I'm feeling so overwhelmed with his care.  I don't want to place him in a nursing home and I don't want more help in the house, someone just sitting here till it's time to do something.  I feel so trapped and I don't know how to change this feeling.  I also feel like such a failure.  I realize intellectually I can't make him better, emotionally well I'm a wreck.  We have no family in the area, rarely have anyone stop in to visit unless they are coming in to sit with my husband while go out.  I don't know how much longer I can do this and that makes me sad as well.  Yes, I do get out everyday for at least 2 hours and some days more, it's just emotionally exhausting for me.   Any suggestions, ideas?  Thank you so much for reading and responding! 

[mv6544509]

Thank you. Excellent suggestion because we do have an on-line portal.

[mv6544509]

Thank you. I need to find some e-mail addresses!

[lb50258545]

Hi Mars, I email my husband's specialist nurse and when I'm out I will talk with the office nurse. My husband doesn't leave the house so I have some freedom there. Otherwise if I'm speaking with someone and they ask questions about his condition in front of him I direct the question to my husband. Hope that helps! LB

[countrygent139]

Hi Mars,

Check with your clinic or hospital as they probably have a patient portal you can use to communicate with the doctor, etc.  Known as MyChart and other names, this allows you direct communication with the health providers. 

[mv6544509]

My sympathies-have you contacted hospice? They are wonderful in these situations.

[mg50694312]

Sometimes God is the only one you can talk to.  My wife contracted Hep C in 1985 through a blood transfusion.  She has lasted a lot longer than expected but she is now in liver failure.  She participated in a clinical back in Jan, 2015 and was cured.  Unfortunately it was too late, the damage is already done.   They cannot consider a liver transplant because she has developed Pulmonary Hypertension and two growing spots in her lung.  It is too dangerous to do a biopsy, but she has now developed congestion and heavy flem.  All the signs are there.  Thank God for my daughter for helping out, but she is no one to talk to, as are her brother and sisters.  No one wants to discuss it, much less visit to give encouragement.  Sadly, the burden is on the spouse.  I draw comfort from our 43 years of marriage and how we were when we were young.  Thankfully, I am healthy enough to care for her needs.  I pray for patience and compassion.  I tell her how much I love her, make her as comfortable as possible and hope things work out, however every week hope fades.  Yes, God is our best friend right now, he's with you now, just talk to him.  Good luck

[mv6544509]

Reading some of your messages, I am struck by the similarities we all are coping with. My spouse, a stroke victim with damage in the logic, and cognitive areas of his brain, refuses to believe that he is not functioning as well as he used to. I see instances where he is declining, but have trouble expressing this to his medical team without my husband being present. How do the rest of you communicate to a PCP, endocrinologist, therapist without your spouse being right there? Hugs to all.