January 30, 2018 at 5:32 pm #113829
My dad is 70 and was diagnosed with GBS in April 2017 (1 week before his retirement and 1 month before my mom’s retirement). Prior to his diagnosis he was working 10-12 hour days, athletic, active, and enthusiastic about life. He was in better shape than most 40 year olds. He was in the hospital for 6 weeks. His PT and OT were so amazed at how fast he was recovering. He was walking with no assistance about 2 weeks after being released from the hospital. He was doing so well that my parents drove across the US in November 2017.
About a week after Christmas, my dad started loosing feeling and experiencing tingling in his hands, severe back pain, and weakness in his legs. He can no longer pick things up, open bottles or cans, and has become very frail and off balance. He needs to use his cane and walker again, has problems sleeping through the night due to the pain, and is very depressed.
My mother is also very depressed and resentful. Neither of them have been able to enjoy their retirement. When they were both working, they only saw each other 2 days a week, because my dad worked out of town. Now they are together 24-7 and my mother is providing constant care giving support, which is not her “area of expertise”. They are both so angry and depressed all the time, that it doesn’t matter what I say to them. Nothing seems to cheer them up or give them hope for the future. I am desperate for any guidance to help them through this tough time.February 1, 2018 at 7:11 am #113830
Hi. What a way to start retirements.
Does the hospital/clinic where your dad was treated have a social worker or office that can direct them to one? One or two meetings (in home or not) may be all they need to sort out options beyond how things are now, depending on their resources. Hiring a cleaner, meals-on-wheels, organized adult activities (if dad can’t drive)so mom can have some free time… These helps, even if only used a few months, can help them get into a better routine and adjust to the “new normal” and rise above it.February 1, 2018 at 5:33 pm #113831
Has he seen his neurologist? Is he getting treatment?February 2, 2018 at 3:44 pm #113836
Electra, thank you for the suggestions.
GH, he won’t see his neurologist until mid-February. He hasn’t received treatment since he was released from the hospital in May 2017. We didn’t get a lot of guidance from the hospital once he was released, nor what to expect for the future. Pretty much all the hospital informed us was that he would have an increased probability of getting GBS again in the future, since he already had it once. That statement has created a ton of anxiety for my parents and family.February 2, 2018 at 4:36 pm #113837
Chris, normally, when a recovering GBS/CIDP patient relapses, the neurologist wants to see him right away. If he is getting noticeably weaker, he should not be waiting weeks. But it’s only a couple of weeks now, so hope for the best.February 2, 2018 at 4:59 pm #113838
GH, that has been so much of our frustration. He didn’t have a regular neurologist treating him as he was transported back and forth between two separate hospitals. So we have been trying to get him established with a neurologist recommended by his general practitioner, but they wouldn’t get back to us. Then we finally got an appointment for next week and the neurologist just changed it to mid-February. Are there services/people that can assist with these types of challenges we are facing? I am looking into Electra’s suggestion about social workers.February 7, 2018 at 3:01 pm #113851
Social worker suggestion is great – his primary care physician can make a referral. Counseling will help both your mother and father, if they are interested. Something to remember is that no matter how well meaning the adult child is, the parent(s) need to want help. Some parents do not want help/suggestions from children, unfortunately.
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