For those who care for someone with Parkinson's disease
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As I have shared, we have been really struggling. I won't go into the details, but suffice it to say that it was so bad that we got in to see our neuro. At that visit, our neuro was alarmed enough to suggest inpatient rehab for my husband. I had never heard of this, but long story short, it is where your loved one goes into a rehab facility (usually part of a hospital) and stays there while they work with him every day doing physical therapy, occupational therapy, voice therapy, or whatever therapy they think will help. My husband was excited about going, since he would have an entire team of people devoted to helping him get better. I packed him his bag of clothes and essentials and checked him in. For two iweeks-did you read that?-two weeks! he stayed at the facility. Within a few days of getting there he realized it was more work than he thought, and he wanted to come home. He began calling (actually having the nurse call for him!) all the time asking to come home, but the doctor scheduled him for two weeks. The facility was in our town, so I did go up to see him quite a bit, and to take clean clothes and special treats, but to have the house to just myself and the kids was surreal. I can't even explain how amazing it was to not be cleaning up pools of urine and feces, or drips, slops, and broken items, or to be able to trust that the food in the refrigerator had not been compromised, and on and on. To sleep without someone yelling me awake was unbelievable. On the flipside, my husband quickly became very unhappy there. He did not feel like the therapy was helping, and he did not like being there. So, boy oh boy, was he happy to come home! I think his being in the rehab facility made him appreciate our home all the more, especially as he told me that he was afraid I was going to leave him there! I have no idea why he would think that, but it was a fear he had. So the kids and I got this amazing unexpected break from the craziness and exhaustion of PD world, and my husband got two weeks of intense therapies and a deeper appreciation for our home and all that I do to keep him here. If there is any way that you can get this for your loved one, I highly recommend it as it benefits everyone. I should mention we are early onset, and so have insurance which paid for a lot of the cost. I don't know whether/ how much Medicare would pay. |
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That's wonderful news, lurking... I'm delighted for you all and have to admit, just a little jealous as we've had a tough few weeks. I hope that this will be a turning point for your family and that things will be better for everyone from now on. Will you be able to avail of this respite again if needs be in the future? Best wishes.. |
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Thanks Daisy, I'm not sure. I was told that if my husband were on Medicare, that we would have 30 days to see if he was ok at home, and if not, could go into skilled nursing for another period of time (which I consider a nursing home because that's where those skilled nursing places are, except that you do physical therapy while there). I'm not sure what happens if you have private insurance like us. I wish you could get a break like this. Our break could not have come at a better time, as we were having some major issues and really struggling. I don't know that those issues won't reappear, but if they do, at least now I know there is this option out there. It did require our neuro's referral, fyi. |
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| Wow, that's awesome! I hope it helped with the issues you all were having, I hope the therapy accomplished what it was supposed to and did some good so that things will be a little easier at home. |
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Just a note: if you are able to do this inpatient rehab, don't expect much improvement, if any. I still can't understand what my husband says, he still won't hold his head up, we don't seem to walk much better, etc. He had a fecal accident yesterday and stepped in it and tracked it around. I told him it's OK to have the accident, but not OK to step in it and even more not OK to walk around the house with poop on his feet. I was told that some days in the rehab facility, my husband could barely do anything, but other days, he could walk the hall. No pattern to it, either, or discernible reason for why one day he did better than another. We haven't fallen, though, which is huge. I am now actively reminding him every few minutes to not stand still if he is just standing there-that's where he gets into trouble. I remind him that if he is not sitting down, he needs to be moving- on his way from one place to another, not just standing in place weaving from side to side. That seems to help, although I hate nagging him all the time and I'm sure he gets sick of me reminding him. It's better than falling, though. I'm so grateful for the break the kids and I had. |
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Good for you for the break! And BTW, how do those of you with children at home manage????? DH has had all kinds of outpatient therapy. Physical, Occupational, Speech, and 4 intense weeks of LSVT as part of a MJ Fox research study. After a hospital stay last year (aspiration pneumonia) he got PT and OT at home for awhile. Unfortunately, I only see a change or improvement when the therapists are working with him. He does any homework exercises half-assed and quits soon after the therapist ends. I wonder what an inpatient program would be like for him. I'm sure he would love all the attention - at least for a few days. He thrives on attention and gets upset when he feels slighted by friends or family - even when there is no slight. But seriously, I think he would give up immediately upon returning home. |
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| Yes any improvement is short lived. I think my husband rallied to put on his best face while in rehab, like he does at the doctor's office. Once home though, the pressure to look better than he is goes away. He has made zero effort since he got home and it is so frustrating. The other day he said he thought he needed to change his exercise regime because it wasn't working!! I told him it wasn't going to work unless he actually DID it. I guess he thinks he is exercising but he does nothing, and after reading about the stress on everyone when you nag PWP to exercise, I don't anymore. |
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| lurkingforacure, It's sad to hear that so many others don't follow thru with exercise or therapy homework also. But at least now I know that my DH is not the only one. |
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| Same here. Mine won't either . I struggle so much with this. Me I would fight until I could fight no more. Hubby ... Is just like oh well ., it breaks my heart he won't do anything but I'm gradually learning to leave it alone . It's his life his body . |