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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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I feel so guilty I could cry
Freddy is at the hospital all depressed and down and I can't go today. I go so often and of course I can't help his depression but since it's a holiday there will be minimum staff there.
Tomorrow he'll be back to full rehab, but for now, he's just sitting around stewing.
I wish I could get more people to see him.
Soon he will be in a different rehab place closer to us and that will make it easier for more people to come. Maybe a few weeks.
I wonder if I picked the right place for him for that reason. I could have gotten him into the place in Bayshore rather than Jamaica but I though the program was better for him in Jamaica.
I talked to the nurse about telling the doc about his deep depression. I know there is no magic pill but I think some of the meds he is on are getting him too down. He needs some therapy one on one with a psychologist as well. I'm sure he's getting some of that but he may need more.
I told him when he gets out we are coming to throw him a huge homecoming party in his honor. I told him he has that to look forward to. I also told him that this is the hard part and it won't last forever.
We watched a movie yesterday together and it was Forest Gump...yep, the whole Lt. Dan thing...I was cringing...
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Posted 5/28/07 12:24 PM  |
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Long Island Weddings
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Moehick
Ready for the sun!
Member since 5/05 30339 total posts
Name:
Properly perfect™
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Re: I feel so guilty I could cry
Don't feel guilty...he is going to go through some depression no matter where he is. You put him in the right place to meet his needs...your a great sister
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| Posted 5/28/07 12:26 PM |
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Kate07
Feel better my little guy!
Member since 5/05 4476 total posts
Name:
Kate
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Re: I feel so guilty I could cry
Susan, you have absolutely nothing to feel guilty about. Pat yourself on the back for being such an incredible sister. Not all people would go to the lengths you've gone to for your brother. You can only take so much on and be in so many place at one time. Sounds like you painstakingly researched which place is best for him and he's there. I'm sure if he knew the full extent of what you've done he'd express his appreciation.
Hang in there
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| Posted 5/28/07 12:31 PM |
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MsSissy
xoxoxo
Member since 3/07 39159 total posts
Name:
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Re: I feel so guilty I could cry
Awww.. I KNOW how hard it can be. Please don't question your decision on the facility. Just remember, if you picked a place soley because it closer to friends and family that doesn't guarantee that they would still visit him.
You needed to pick a place that offered the best therapy program for him. To get him home ASAP.
Unfortunately, I know all too well that during times like these, you see who the true friends are. If you can try not to get caught up in who doesn't visit him, but who does. And as far as his children are concerned, they need to step up and be there for their dad. If you need to remind them of this every day than do so. He needs them there and you need their help.
As for his depression, I would talk to his drs right away about that. Not only for medicines, but ask them about getting him someone to talk.
Hang in there...
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| Posted 5/28/07 12:37 PM |
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SweetestOfPeas
J'taime Paris!
Member since 3/06 32345 total posts
Name:
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Re: I feel so guilty I could cry
Posted by Kate07
Susan, you have absolutely nothing to feel guilty about. Pat yourself on the back for being such an incredible sister. Not all people would go to the lengths you've gone to for your brother. You can only take so much on and be in so many place at one time. Sounds like you painstakingly researched which place is best for him and he's there. I'm sure if he knew the full extent of what you've done he'd express his appreciation.
Hang in there
well said and I completely agree! don't beat yourself up! you have done SO MUCH and this is not your fault!
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| Posted 5/28/07 12:41 PM |
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Goldi0218
My miracles!
Member since 12/05 23902 total posts
Name:
Leslie
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Re: I feel so guilty I could cry
Susan, speaking as someone who has had two family members in similar facilities, you are 100% doing the best you can for him. It is so important that he get the best care so he can get back to himself as soon as possible - no matter if the care is down the block or in Timbuktu. If you second guess your choices, you will drive yourself crazy and you don't deserve that. If it means being inconvenienced by driving a little out of your way to see him, then thats what you (or anyone else) will do.
I know what it is like to live with the guilt. When Dad had been ill, his facility was literally 10 minutes (maybe less) from my home and on the days when I wasn't there, I felt awful. then I started to go more frequently and neglected my own physical and mental health. I was eating poorly and not exercising. All of the work I put into myself for the 2+ years before had been down the tubes and it still took me another 2 years to start up again. There was stress in family and personal relationships and it wore heavily on me. It didn't have to. In retrospect, I know my father would not have wanted this for me.
Re: his depression. Is he on any anti-depressants at all?
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| Posted 5/28/07 12:54 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: I feel so guilty I could cry
Posted by Goldi0218
Susan, speaking as someone who has had two family members in similar facilities, you are 100% doing the best you can for him. It is so important that he get the best care so he can get back to himself as soon as possible - no matter if the care is down the block or in Timbuktu. If you second guess your choices, you will drive yourself crazy and you don't deserve that. If it means being inconvenienced by driving a little out of your way to see him, then thats what you (or anyone else) will do.
I know what it is like to live with the guilt. When Dad had been ill, his facility was literally 10 minutes (maybe less) from my home and on the days when I wasn't there, I felt awful. then I started to go more frequently and neglected my own physical and mental health. I was eating poorly and not exercising. All of the work I put into myself for the 2+ years before had been down the tubes and it still took me another 2 years to start up again. There was stress in family and personal relationships and it wore heavily on me. It didn't have to. In retrospect, I know my father would not have wanted this for me.
Re: his depression. Is he on any anti-depressants at all?
He's on anti anxiety and anti psychotics along with two drugs for alzheimers and confusion which he needs. He is not on anti-depressants so I think the mix that he's on is not the best for him.
there's no magic pill as I've said. He needs one on one therapy but he won't remember it 15 minutes later. His short term memory is shot.
Sissy...was it that way for your DH?
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| Posted 5/28/07 1:01 PM |
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Goldi0218
My miracles!
Member since 12/05 23902 total posts
Name:
Leslie
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Re: I feel so guilty I could cry
Ok it makes sense now, that type of cocktail could make a person less responsive.
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| Posted 5/28/07 1:04 PM |
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MsSissy
xoxoxo
Member since 3/07 39159 total posts
Name:
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Re: I feel so guilty I could cry
Posted by Blu-ize
He's on anti anxiety and anti psychotics along with two drugs for alzheimers and confusion which he needs. He is not on anti-depressants so I think the mix that he's on is not the best for him.
there's no magic pill as I've said. He needs one on one therapy but he won't remember it 15 minutes later. His short term memory is shot.
Sissy...was it that way for your DH?
DH's short term memory was/is affected. He wasn't on any anti-depressants until about 4 months ago. Which was surprising to everyone. But
the more he started to remember his life before the accident the more depressed he got. He still see's a neuro-psychologist once a week and a psychiatrist once a month.
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| Posted 5/28/07 1:12 PM |
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kathleeng
Member since 5/05 3775 total posts
Name:
Kathleen
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Re: I feel so guilty I could cry
First off, if only all of us could have a sister like you!!
You have been so amazing and wonderful NEVER forget that!!!
I understand your feelings though that go along with an ill family member. It is a tough situation where there is a lot of second guessing, guilt, hopelessness,and such.
I am sure you have tough days ahead and hard decisions to make and that will go with the territory.
I hope things work out for all of you and the doctors guide you in making all the best decisons in your brother's best interest.
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| Posted 5/28/07 1:28 PM |
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MrsT
Enjoying wedded bliss.....
Member since 4/06 1323 total posts
Name:
Katrina
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Re: I feel so guilty I could cry
There is NO REASON FOR YOU TO FEEL GUILTY. You picked the a place with the best therapy program. From what you have shared with us I think you've gone above and beyond for your brother.
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| Posted 5/28/07 1:49 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: I feel so guilty I could cry
Posted by Mssissy
Posted by Blu-ize
He's on anti anxiety and anti psychotics along with two drugs for alzheimers and confusion which he needs. He is not on anti-depressants so I think the mix that he's on is not the best for him.
there's no magic pill as I've said. He needs one on one therapy but he won't remember it 15 minutes later. His short term memory is shot.
Sissy...was it that way for your DH?
DH's short term memory was/is affected. He wasn't on any anti-depressants until about 4 months ago. Which was surprising to everyone. But
the more he started to remember his life before the accident the more depressed he got. He still see's a neuro-psychologist once a week and a psychiatrist once a month.
about how long ago did this happen to him? I'm looking for light at the end of the tunnel for him. I think the more he is getting better and realizing what's going on, he gets more depressed.
Maybe that's a good thing since we want to him to get his memory back but at the same time he's going to be very depressed and frustrated. I wish I could make that go away for him. I know I can't but I can talk to the doctors about his meds..even though I'm not a doc..hey, but I play one on TV! 
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| Posted 5/28/07 9:46 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: I feel so guilty I could cry
Posted by kathleeng
First off, if only all of us could have a sister like you!!
You have been so amazing and wonderful NEVER forget that!!!
I understand your feelings though that go along with an ill family member. It is a tough situation where there is a lot of second guessing, guilt, hopelessness,and such.
I am sure you have tough days ahead and hard decisions to make and that will go with the territory.
I hope things work out for all of you and the doctors guide you in making all the best decisons in your brother's best interest.
thanks. I know I'm doing all I can but I still feel that if I had a few hrs to myself I should be with him. It's hard to visit him too now that he's so down.
I'm sure the rest of his rehab will be a roller coaster ride. The best I can do is ride with him and help him get his life back.
He appreciates it, I know.
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| Posted 5/28/07 9:48 PM |
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lvdolphins
My Loves!
Member since 5/05 46292 total posts
Name:
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Re: I feel so guilty I could cry
Don't feel guilty. You have been amazing through all of this!
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| Posted 5/28/07 9:50 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: I feel so guilty I could cry
Posted by lvdolphins
Don't feel guilty. You have been amazing through all of this!
thanks!
I promised him a party when all is said and done..
You are all coming right?!
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| Posted 5/28/07 9:56 PM |
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MsSissy
xoxoxo
Member since 3/07 39159 total posts
Name:
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Re: I feel so guilty I could cry
Posted by Blu-ize
about how long ago did this happen to him? I'm looking for light at the end of the tunnel for him. I think the more he is getting better and realizing what's going on, he gets more depressed.
Maybe that's a good thing since we want to him to get his memory back but at the same time he's going to be very depressed and frustrated. I wish I could make that go away for him. I know I can't but I can talk to the doctors about his meds..even though I'm not a doc..hey, but I play one on TV!
DH's accident will be 2 yrs ago June 6th. I CAN NOT believe it will be 2 yrs already. I remember that phone call word for word from the detective.
I have to admit, it's a long tunnel, but there is a light at the end of it. Although our life is not what it use to be
he is much better than he was even 1 year ago.
About 4-5 months after his accident they wanted to start him on ridalin (sp?), because they thought it would help motivate him. Give him a little bit of a boost to get him going. But he refused it. He told the drs, I'm in a F*ing hospital what do you want me to do get up and dance. He didn't want meds, he just wanted to feel normal again. That's when they increased his therapy and they allowed me to take him out of the in-patient rehab facility daily. I would pick him up and take him out for a few hrs and it helped him a lot.
For DH, physical therapy was key. He didn't care for o/t or speech, although he would go 2x a week for each, it was p/t that helped him mentally. That and his weekly neuro-psych visits. He needed to talk to someone besides me about how he was feeling. And I NEEDED him to talk to someone.
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| Posted 5/28/07 10:16 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: I feel so guilty I could cry
Posted by Mssissy
Posted by Blu-ize
about how long ago did this happen to him? I'm looking for light at the end of the tunnel for him. I think the more he is getting better and realizing what's going on, he gets more depressed.
Maybe that's a good thing since we want to him to get his memory back but at the same time he's going to be very depressed and frustrated. I wish I could make that go away for him. I know I can't but I can talk to the doctors about his meds..even though I'm not a doc..hey, but I play one on TV!
DH's accident will be 2 yrs ago June 6th. I CAN NOT believe it will be 2 yrs already. I remember that phone call word for word from the detective.
I have to admit, it's a long tunnel, but there is a light at the end of it. Although our life is not what it use to be
he is much better than he was even 1 year ago.
About 4-5 months after his accident they wanted to start him on ridalin (sp?), because they thought it would help motivate him. Give him a little bit of a boost to get him going. But he refused it. He told the drs, I'm in a F*ing hospital what do you want me to do get up and dance. He didn't want meds, he just wanted to feel normal again. That's when they increased his therapy and they allowed me to take him out of the in-patient rehab facility daily. I would pick him up and take him out for a few hrs and it helped him a lot.
For DH, physical therapy was key. He didn't care for o/t or speech, although he would go 2x a week for each, it was p/t that helped him mentally. That and his weekly neuro-psych visits. He needed to talk to someone besides me about how he was feeling. And I NEEDED him to talk to someone.
You are right. They plan on taking him out of the hospital for community re-entry soon..taking him to a local pizza place to see his social interaction..etc..he will be in this acute hospital for a few more weeks and then go to sub acute.
Where did your DH rehab?
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| Posted 5/28/07 10:52 PM |
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MsSissy
xoxoxo
Member since 3/07 39159 total posts
Name:
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Re: I feel so guilty I could cry
Posted by Blu-ize
You are right. They plan on taking him out of the hospital for community re-entry soon..taking him to a local pizza place to see his social interaction..etc..he will be in this acute hospital for a few more weeks and then go to sub acute.
Where did your DH rehab?
DH started his therapy at St Charles Hosptial in Port Jeff when he was transferred from NY Presbyterian in Manhattan and than was transferred to St Johnlans in Kings Park as an in-patient for 3 months.
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| Posted 5/28/07 11:01 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: I feel so guilty I could cry
Posted by Mssissy
Posted by Blu-ize
You are right. They plan on taking him out of the hospital for community re-entry soon..taking him to a local pizza place to see his social interaction..etc..he will be in this acute hospital for a few more weeks and then go to sub acute.
Where did your DH rehab?
DH started his therapy at St Charles Hosptial in Port Jeff when he was transferred from NY Presbyterian in Manhattan and than was transferred to St Johnlans in Kings Park as an in-patient for 3 months.
St. Johnsland is one of the places he could go. The other is North Shore extended care. Did you like it there? Any words of wisdom? I hear it's a good facility and has a good TBI program. Either way, you have to be on top of these places. I called Jamaica today to tell them they have to keep the phone where he can reach it. They kept putting it out of his reach.
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| Posted 5/28/07 11:04 PM |
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MsSissy
xoxoxo
Member since 3/07 39159 total posts
Name:
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Re: I feel so guilty I could cry
Posted by Blu-ize
St. Johnsland is one of the places he could go. The other is North Shore extended care. Did you like it there? Any words of wisdom? I hear it's a good facility and has a good TBI program. Either way, you have to be on top of these places. I called Jamaica today to tell them they have to keep the phone where he can reach it. They kept putting it out of his reach.
After all the kinks were ironed out, I did like it there. But you do have to stay on top of these places.
I would ask them what the patient/aide ratio is. During the week and especially the weekends.This was a big issue with me.
Another issue was how often they were showered. They only did it 3x a week. Sorry but 3x a week isn't acceptable to me. They allowed me to take a class so I could give him a shower on the off days.
As for the therapy he received, it was great. They had him using a walker after 3 months. Once he was discharged he went back to St Charles in Port Jeff as an out patient.
Where do you live?
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| Posted 5/28/07 11:13 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: I feel so guilty I could cry
Posted by Mssissy
Posted by Blu-ize
St. Johnsland is one of the places he could go. The other is North Shore extended care. Did you like it there? Any words of wisdom? I hear it's a good facility and has a good TBI program. Either way, you have to be on top of these places. I called Jamaica today to tell them they have to keep the phone where he can reach it. They kept putting it out of his reach.
After all the kinks were ironed out, I did like it there. But you do have to stay on top of these places.
I would ask them what the patient/aide ratio is. During the week and especially the weekends.This was a big issue with me.
Another issue was how often they were showered. They only did it 3x a week. Sorry but 3x a week isn't acceptable to me. They allowed me to take a class so I could give him a shower on the off days.
As for the therapy he received, it was great. They had him using a walker after 3 months. Once he was discharged he went back to St Charles in Port Jeff as an out patient.
Where do you live?
I am in Bethpage. He's not stable enough for a shower yet and he also has some open wounds so they won't do it. They do clean him. Yes, the weekends are really hard for him now and there's nobody around. He's not walker ready yet, but hopefully soon. Hopefully he will learn to transfer to the toilet. He's in depends right now and that makes me nuts, but what choice is there?
Did St. Johnsland have patients that were not just geriatric?
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| Posted 5/28/07 11:16 PM |
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MsSissy
xoxoxo
Member since 3/07 39159 total posts
Name:
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Re: I feel so guilty I could cry
Posted by Blu-ize
I am in Bethpage. He's not stable enough for a shower yet and he also has some open wounds so they won't do it. They do clean him. Yes, the weekends are really hard for him now and there's nobody around. He's not walker ready yet, but hopefully soon. Hopefully he will learn to transfer to the toilet. He's in depends right now and that makes me nuts, but what choice is there?
Did St. Johnsland have patients that were not just geriatric?
DH was barely walking when he was transferred to St Johnland. He was dependent on the aides to transfer him to a wheelchair and than transfer him to the toilet when he needed.
St Johnlands is a TBI facility and nursing home. HOWEVER, the nursing home is separate from the TBI unit. They never had the 2 sides interact.
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| Posted 5/28/07 11:25 PM |
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Blu-ize
Plan B is Now Plan A
Member since 7/05 32475 total posts
Name:
Susan
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Re: I feel so guilty I could cry
Posted by Mssissy
Posted by Blu-ize
I am in Bethpage. He's not stable enough for a shower yet and he also has some open wounds so they won't do it. They do clean him. Yes, the weekends are really hard for him now and there's nobody around. He's not walker ready yet, but hopefully soon. Hopefully he will learn to transfer to the toilet. He's in depends right now and that makes me nuts, but what choice is there?
Did St. Johnsland have patients that were not just geriatric?
DH was barely walking when he was transferred to St Johnland. He was dependent on the aides to transfer him to a wheelchair and than transfer him to the toilet when he needed.
St Johnlands is a TBI facility and nursing home. HOWEVER, the nursing home is separate from the TBI unit. They never had the 2 sides interact.
that's another reason why I would like him there. I'm finding the TBI unit at Jamaica to be a bit of a looney bin though. I'm sure it's that way in every TBI unit. The people there have brain injuries. I find it hard to go there sometimes. Some of the patients are worse off than my brother and so young.
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| Posted 5/29/07 8:38 AM |
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