You know, I've been thinking about it. She really is struggling to read right now and magazines might be a bit too frustrating for her. Maybe hold off on those for a bit?
I am serious about the photographs. Send her a photo of your flowers, your garden, your kids, your dog. She would love that.
According to their website, visiting hours are generally 11 am - 9 pm but may vary by unit, Chantell.
Prayers for my mom please!
I think I should bring her Makwa....that'll do it...won't everyone be so pleased? LOL
Unless I've missed a new thread that might have been started, I haven't seen any updates on your Mom recently, Diane. How are things going?
I'm HOPING that no news means no crises, and that her recovery is progressing well?
Sorry, I've been running back and forth and I forget.
She's doing better. Still problems with her memory but her reading is better and she's able to walk some with a walker and she's able to stand up and maneuver herself into a wheelchair with a little step by step coaxing. I went to see her today and the past couple of days she's been pretty down, crying and saying she feels like she's being punished. She told my poor Aunt Mariam on the phone yesterday that she was in a jail cell with a bull. My sister has a photo of my niece on her wall riding on one of those fake riding bulls like they have in Texas.
We have moments like that but then her memory overall is better and she's very good about doing anything anyone tells her will make her better. Most of the time she understands she's there to get therapy to make her strong enough to go home.
Hart, don't despair. Some of that depression and confusion may be medication related and will self remedy as they get the mixture right. If it continues, ask your sister to get a meds list and review it with her regular physician to see if some of it can be eliminated. So many times they over medicate seniors and it really compromises the quality of their life.
That's OK, hart - didn't mean to bug you, but glad to get the update.
In addition to medication issues, some of the confusion/depression can come from being out of their own environment, with different hours, routines, noises, etc. It's so hard, and progress can be so slow, but keep the thought that your mom is in the right place, to get her strength back so she can go back home, hopefully before too long.
Hang in there! I'm headed down to Richmond in the morning ... errrr... later this morning (YIKES), so I've got to get to bed. Will continue the good thoughts and prayers!
PS: Nice daylily combination, stormyla!
Thanks, Diva. That devil enabler, Hart, turned me on to a great DL connection and now I have a good bit less $ to spend on the kids at the beach next week. Maybe they won't notice. I hope.
Not meaning to jump in with yet more advice but...
Sadly it is common (you already know this, I'm sure) for folks to deal with temporary depression after heart attacks and/or strokes. If it continues...having her put on an anti-depressant i.e. Cymbalta for a temp. period might be helpful.
Diane, Our thoughts and prayers are still with you! Ric and Holly
Debra is talking to the doctors today and I think it could be a stroke after effect - it certainly was with Daddy - but they also have her on seizure medicine because of the seizure she had at PW Hospital. I think that could be causing some of this too.
Anyway, she's going to ask them today if an antidepressant would be a good idea. She may not be able to take that with the other meds or it might affect their ability to monitor how her brain is healing or whether any new bleeding has popped up.
Debra's husband is a doctor and he told her most of it is probably just being in the hospital, being so limited in what she can do, especially for someone who was as active as Mom, having to depend on others for just about everything. As far as the feeling that she's in jail, she's still in that bed http://www.healthproductsforyou.com/catalog/products/4286/Posey-Bed-Canopy-System/ that zips shut with mesh so she can't get out of bed and hurt herself.
When she's not confused, she understands the need for it. When she is confused, she thinks she's in jail.
Devil enabler, moi?! LOL
Quick update, I just got home and I'm worn out. We met with the doctors and therapists today. The plan is to let us take her home (with full time care and at home therapy) next Wednesday. I know she'll be very glad to get home. In fact, she tells us about every hour on the hour she wants to go home. LOL
She's made some pretty dramatic strides this week. She's able to walk without a walker, although she's not exactly marching around on her own, she was even walking up and down steps with help today in therapy. She can dress herself and she has been feeding herself. She still doesn't have much of an appetite but she's eating more than she was a few days ago.
The doctor told us to expect the left side neglect to be permanent but eventually her memory will improve to the point that she remembers to compensate for it. We're meeting with the neuropsychiatrist on Monday to get some pointers on things we can do to help her.
Chantell, they moved her to room 512 because she had a bad night last night. The doctor also agreed to give her something to help her sleep. All of the bad days have been when she's tired from not sleeping well the night before. I assume she'll be staying that room until we take her home but I'm not sure. If you can't find her, there's a huge nurses station outside all the rooms. Just ask someone there which room she's in. Or you may just want to wait until she gets settled in at home.
That sounds great! I know it seems like its gone on forever but to be out of care that fast is really doing well. I'm glad for you.
That is really good news. Like Sally says, it is actually pretty fast, and a good sign that things are going well.
So, if I send a card to the address you posted, and to Room 512, it should get there? LMK!
She's still got a long road to travel, but I hope getting her back in familiar surroundings will be good for her.
Hugs all around..........Barb
I guess it's good news. Debra and I think they're letting her go home too soon. We told them that and they said they have criteria and once she meets those criteria, they have no choice. Your government in action. sigh
I do hope being home will help with some of the agitation. I guess we'll find out. I am glad she's doing so much better in so many areas.
Barb, the nurses are making sure she gets her cards no matter what room number is on the address. Or if you want to send a card to her home address, just let me know and I'll dmail it to you.
Sally, I keep meaning to write and ask how your mom is doing. Is she doing okay at home?
Diane, whichever you think is best. Actually, as I'm typing, I'm also thinking (LOL) ... based on my experiences with leaving facilities with my Mom, it might be better for me to send a card to her at her house, so there will be less to pack out next week? If you think that's better, send me a D.
I am sorry you are running into the "move 'em out" situation that we have encountered numerous times - I hope it all goes well. I know your Mom will be happy to be home, but I also know it's not that simple. At all. I truly feel your pain.
Sally, I may have missed something here - what's up with YOUR Mom????
hart, I printed a picture of the iris you gave me, to put on a plain card for your mom. I thought she'd like to hear about one of 'your' flowers. I do think once she gets home, she'll have more incentive to move around and that will be a good thing, esp with full time care, assuming you are comfortable with the quality of that care. Or is that DebraCare LLC?
DLDiva- I had unloaded on hart earlier but not really put it out here, in April my mom was in the hosp with pneumonia and things were pretty grim for a time. She's home a month or so now with "SallyCare LLC". She also was so anxious to get out of the nursinghome after 3 ? weeks--they wanted to keep her another week and I let her insist on going home the next day after that meeting. She
s OK with all her self care and cooking but I realized yesterday, after talking about how to use a taxi, that she really doesn't want to leave the house by herself, at least not for errands. So she might actually make good on her "threat " of the last fifteen years to move to a retirement comm. She loves to sit on her patio swing and putter in the yard, but that doesn't work in January in Maryland --sigh.
Sally, some of the assisted living facilities have gardening areas. You might want to look for that.
Mom is going to have to have 24 hour care. Debra has been staying at the house but will eventually have to go home, sometime late this month. I had planned on going and staying with Mom a few nights after Debra leaves but there will still be a full time caretaker with her.
They're telling us she doesn't need a hospital or Posey bed, just a regular bed. That means someone has to be there if she gets up in the middle of the night. She can walk but she still needs someone there to help her and to keep reminding her to look for the missing left side. And we have to worry about her trying to wander up or down stairs and hurting herself. We can lock the basement door but I don't know what we're going to do about the open staircase to the upstairs. Cooking for herself is out of the question. She wouldn't see a burning burner on the left side.
We hope being home will help her get her memory back but eventually she'll be ready to go to an assisted living facility. She'll still have to be in one with facilities for those with memory deficits. In most cases those are alzheimers patients but that would include Mom too. And what would she do when she's standing in front of the microwave unable to remember what buttons to push?
We have to set up my brother's old room for her since that would have her on the ground floor and fix up one of the bedrooms upstairs for a live in caretaker or move everything out of her sewing room downstairs and set that up for the caretaker. Luckily there's a full bathroom downstairs but we have to rig that up with a shower chair and grab bars. It also has a sliding glass shower door across the tub and we're going to have to get rid of that.
Sally you didn't unload on me. It's so good to hear your mom is doing so well. What a great idea for the card!
One thing I learned from all this - we women have keeping up with our purses so engrained in our minds, Debra had to take her an empty purse with a few things in it to keep her from worrying half to death about her purse. She has it with her always (clutching it for dear life) and her cards that haven't been put up on the wall are in her purse for her to enjoy throughout the day. So I don't think moving the cards is going to be a problem. LOL
I'll be glad when she's well enough to go for a ride without getting too tired. We need to take her out to the cemetery so she can visit Daddy as soon as we can because she keeps fretting about that too. She does still talk every now and then about calling Daddy but not nearly as much as before and always when she's tired. That's one area where I see her memory is improving.
Sally and hart, wow - it seems we could form a club (or a support group???), and I'm sure there are many others out there reading this now who are also in similar boats.
When we were looking for an assisted living facility for Mom last year, we did see many that had gardening areas out back, and lots of nice places to sit outside when the weather is nice.
Sally, be glad that your Mom seems amenable to moving to a retirement home or assisted living facility. My mom was not. At All. We are just incredibly fortunate that we don't have to sell her house (yet) to keep her in a safer place. She is SO not ready for that yet - won't even consider getting rid of her car, which she hasn't driven in over 2 years.
hart, you probably already know this, but many ALFs have a Memory Care wing/unit. The place Mom is right now has 3 levels of care for the Assisted Living wings, and currently mom is at the lowest level, and trust me, she's not that independent! So maybe your mom would qualify at a higher level of assistance? Just something to check.
Hang in there - hugs to you both! Barb
PS: Maybe we should petition Dave for a "Caregivers Forum"? LOL - sorta.
Could we have nap time in that forum? LOL
I did a lot of research on the nursing homes and assisted living in and around Manassas last week. There were several of the assisted living places that had special units for memory impaired patients. The ideal assisted living facility, and it's very nice, is only a half block from her house. They have a special needs program but I'm not sure if they have rehab, but the other possibility is that by the time she's ready for assisted living, she won't need the special unit. If we can just get her memory better, she may not need that and they told us yesterday we would probably see a significant improvement there a year from now. It's going to all depend on whether she's ever able to compensate for the left side neglect.
There's another one with that type of unit close to where I used to live out in the Sudley area and another one in Lake Ridge, which is on the other side of PW County. Anyway, there are some options there but right now we need to get her set up at home. We will start looking at those soon because the better ones all have waiting lists.
barb- there IS a caregivers forum, go look. One can't expect too many easy answers to all this. I haven't told mom all the behind the scenes research stuff I've done to try and sort out choices she may have before getting to that point. If only, if only, if only.....we had the money and foresight to buy a bigger house with extra bedroom.
hart, will it be easier traveling to your mom's than this place?
I'm going through the same thing, Sally. I could convert my office into a bedroom but I have no downstairs bathroom and my stairs are steep with narrow steps, not at all safe for someone not getting around too well. She just wants to go home anyway. We're thinking after she's been home for a while and sees it perhaps isn't the best situation, she'll be ready for a nice assisted living place. Maybe we can get her memory improved and do something about this agitation too.
It will be a lot easier getting to Mom's, about an hour less travel time. Less than that if traffic is good and I can get across Manassas fast enough. The 234 bypass helps but I still have to get through downtown or the Sudley Road crawl to get to her side of town.
Hart, You will find that your mom will improve tremedously just from being in her familiar comfortable surroundings. In her own home she will find ways to compensate for her impairments. My mom always found ingenious methods after each of her nursing home stays. Just be sure to arrange for a therapist to come into the house once or twice a week to show her new ways to work those muscles. Do you have a good social worker to show you all what is provided by the county and Medicare? Have you contacted the Department of Aging?
It will be very difficult for you to cover round the clock care with paid assistants. Many of the churches have large volunteer groups that will stay with the elderly for several hours a day. Also, the various illness societies cancer, altzheimers, heart also have volunteers who will run errands, take her places and just visit with her. Don't forget about meals on wheels. They are very dependable.
Many people find that the adult day care centers work wonders for their parents. Mostly it's because it forces them to interact with others in their situation and it also helps them not to be so self involved when they see others so handicapped . Sometimes people only go 2 or 3 days a week for several hours each day.
Maybe I'm giving the wrong impression about how well she's doing. She's going to have to have 24 hour care, not just us or a volunteer there around the clock. This left side impairment is extremely dangerous and she really can't just get up and walk around without someone right there to help her. She can feed herself, but she eats one bite and says she's full. We coax her into eating another bite and she says she's full, etc. One minute she remembers where she is and why, the next minute she wants us to call Daddy, who has been dead for three years.
On a good day, when they remind her in therapy to look for the missing left side, she remembers it for about five minutes. On a bad day, she doesn't remember at all. I'm skipping the agitation, usually when she wakes up or is tired. Yesterday when my sister got there, she was bellowing at the top of her lungs for her and when we got back from the meeting with the doctors, she was doing it again. That's why they had to move her into a room by herself. She hasn't had a good night's sleep since this happened. They quadrupled the dose of the medicine to help her sleep last night and it did nothing. Another bad night. Maybe when she gets home in her own bed she'll sleep better. I hope so.
Hopefully once she gets settled in she'll be at a point where she doesn't need a trained caretaker there around the clock, but that's not going to be real soon. She's never going to be able to live alone again and it's possible she will never get to the point where she doesn't have to have someone there making sure she can get to the bathroom, that she's eating her food, that she's not trying to do something that will hurt her. From what they were telling us yesterday, maybe in a year she'll be to that point.
Like I said, we feel like she's being sent home too soon but there's nothing we can do about that. At some point hopefully we'll be able to use things like volunteers and senior daycare, but she's nowhere near capable of any of that right now.
The social worker spent all of the time talking to my sister yesterday. I had to twice remind her I wasn't wallpaper when she turned her back on me and walked away where I couldn't hear her while talking to my sister. But, yes, she's done a good job of letting us know what the options are and what's available. Our church also has a nurse available to advise us on what's available in the area.
She will have three kinds of therapists coming to the home for the different kinds of therapy she needs.
My brother has a friend who had to have a live in caretaker for his mother and highly recommended the woman he hired. We're trying to get her. They have also strongly recommended that for the first two or three days and nights we have 24 hour people on 12 hour shifts.
gosh, hart, no wonder you're feeling rushed out. I would also be concerned.
It just doesn't make any sense to me why they're sending her home already. I agreed with Debra that if she wants to go home, she should be able to go home. But I had no idea she would be going there so impaired.
This is an awful cynical thing for me to say but I wonder if how quiet or loud a patient is can have anything to do with how fast they try to move them out. Will they provide the full time care Medicare/ insurance? same as if she got her full nursing care/rrehab inpatient benefits? or is that going private pay.
I had thought that the standards that needed to be met before discharge would protect patients from too- early discharge. I'd feel sure with Debra involved and your other family members, that you all are on top of it.
That thought had crossed my mind, but she just started the loud stuff yesterday and they were talking about sending her home Wednesday before that.
Medicare is a lot of the problem. The hospitals have to follow their criteria, not what they may think is best for a patient. Even with private insurance, they have to follow the same criteria.
I think insurance will cover the therapists, doctor visits, etc. but there won't be any coverage for a nursing home or home caretakers. At least that's what I think. I could be wrong because I haven't dealt with any of the insurance stuff. It's okay. I may be poor as a churchmouse but Mom is okay for money.
Hart, I've been following along. I know how worried you must be. Stormyla, has very good points and ideas, not much I could add to that.
Sally, So sorry to hear about your Mother, too. I knew you were very busy but didn't realize why. You are both in my prayers and thoughts. Holly
I've been following along also, keeping you all in my thoughts & prayers...
*HUGS*
I know, Holly. I know down the road all those places are going to be great resources. The local agency on aging is very good - I had a lot of dealings with them when I was an editor. There's also an excellent senior center in Manassas that has some resources too. Luckily I'm a research wizard and I'll be able to expand on what I've already done when there's more time.
The biggest resource for now is going to be Mom's network of church ladies and other friends. Some have already visited a lot in the two hospitals but some are pretty elderly themselves and it will be a lot easier for them to visit her when she's in town. That will help a lot in keeping her spirits up. The church has also offered to send someone to give her communion at the hospital or home on a regular basis and she said she'd like that.
I'm feeling a little less frustrated and worried this evening. The doctor changed her sleep meds tonight and is adding an anti-depressant tomorrow. I think that will help a lot. I do think getting home will help with some of it too.
A workman is coming tomorrow to fit up her bathroom - install grab bars, take out the glass shower door and so on. Monday the care lady is coming for an interview. She does have the certification needed to provide the kind of care Mom needs. They're now recommending 5 days or so of the nighttime on duty person and they will actually sit in her room all night. That will help determine her sleep patterns, they said.
All our poor little mamas. We have to do what we can to take care of them.
I'm glad to hear you are feeling a little better about this.
And meanwhile our poor mamas just wish they could still take care of us.
Hart, I'm so sorry you had that frustration with the social worker. At least she is doing a good job for her. Thank heavens that the church is there to help too.
I was not making suggestions for alternate forms of care, rather pointing you to an arsenal of items to augment the round the clock care. Even if you are lucky enough to find one really good full time care giver, rarely can you find three. None of them work 7 days a week. Plus there will be times when they are sick or need days off. Some of them won't be very dependable and you may get last minute calls from the covering nurse about relief not showing up. They will all want vacations too.You will need a pool of at least 5 nurses. Sometimes an agency is best to wrap around the care giver(s) of your choice. Unfortunately the people from the agencies aren't always up to snuff.
If your mother requires constant attention, the meals on wheels will free up the nurses time. They only deliver one meal a day. This is a life saver on days where you have problems with nursing coverage.
The church volunteers are also a good source of feedback for you to let you know what is going on when you are not there. Not all of the people provided by agencies are of the best character or honesty. Some have financial problems and you have to be careful that no one is taking advantage of your mom.
If Debra is close enough to do all of the grocery and prescription shopping and take her to all of her doctor appointments, that is great. But there will be times, when unexpected changes are made to her meds or unplanned doctor visits arise or something breaks at the house. You will need to make available a small amount of $ to the care givers to cover those times, but accountability oversight is needed.
If it's too far for Debra to go weekly, it is usually better to find someone other than the nurses to do the shopping. There are small companies who provide these services. I had a friend whose mother, a life long frugal person, dealt with the frustrations of her confinement by starting a compulsive Home Shopping Channel addiction. I'm talking about $500 to $1000 a week, being encouraged by one of the shift nurses who felt that the mother needed to indulge herself. Pretty soon all of the mother's credit cards had large balances.
Medicare will pay for most of the therapists as long as your mom shows continued improvement and cooperates with the therapy program. The physician who orders the therapy will have control over how long it will continue up to the medicare payment limits. I found that I had to ask the physicians if the therapy was ending because the Medicare benefit was exhausted. Sometimes that was the case. Then I had to ask for more therapy prescriptions with the understanding that it would be private pay.
Medicare will also pay for a skilled visiting nurse, if ordered by a physician, and they will also pay a certain amount of time for a visiting nurses' aid if physician ordered. It's good to take advantage of these even if you have round the clock nurses. The visiting nurse is a good check and balance to observe the quality of care mom is getting. The Nurse's aid will cook a meal, change and wash bedding, clean the sleeping area and help with bathing.
The social worker should also arrange for someone to evaluate what durable medical equipment that your mom should have in her home and help you to get them covered through Medicare.
I've heard it said that the first 6 months post stroke are critical to the patients recovery and that 99% of the improvement will occur in the first year. I'm sure that you and your siblings will do all you can to help her regain as much health as possible. There will be a lot of heartache and frustration along the way for all of you. But hopefully your mom will make as much progress as possible and find happiness and enjoyment no matter how much of her abilities are regained.
Sally, Isn't that the truth. They never stop worrying about us no matter how old we get. They are also very bewildered about our life styles. Most of them were stay at home moms for most of their child rearing years. Certainly they don't understand the pressures of our careers. Divorce was much less common in their era. Never did they have children by choice as single women. Yet they still look for ways to make our lives easier, even if they are helpless themselves.
I know, Stormy. I appreciate all the help. We're just kind of overwhelmed right now trying to get the basics done to get the house ready, get the caretaker lined up, get night people lined up, etc.
Do any of you have packrat mamas? Mine sure is and my SIL spent the entire day today hauling stuff out of my brother's old room because it has to be stripped down to a monk's cell.
It will be much easier for me to get up there several times a week once she's at home because it's a lot closer than the hospital. I have my dad's truck too so I have a way to get back and forth without depending on Joyce. And my brother lives about four blocks from her.
She was more herself today than she has been since this started. They finally gave her anti-depressants and it was unbelievable the difference it made. Her short term memory is still horrible but I was kind of amazed the things she was remembering today. She was even able to dial her sister's phone number by herself.
OH Diane....FINALLY catching up....computer time has been minimal the last few days...unless i missed it some where you might want to contact a patient advocate w/your ins. co. if you still think she's being prematurely being d/c'd. The girls and my schedules kept me from getting over there last week. Which do you think will benefit her more - if I come by before or after her d/c? I am SO pleased they went ahead with the anti-depressant!!
Hugs!
Whatever is easiest for you, Chantell. Hugs to you too.
I talked to my sister today - we could file an appeal and they would have to keep her until the appeal is heard, but after seeing how much better she was today we were both feeling better about it.
The doctors told my sister this morning they think being home will help a lot with the sleep problems and the agitation too.
so glad things are looking up, esp how your mom seeme more herself!!
Well, it seems like for every step forward, we go two steps back. Last night was horrible. They took her out of the Posey bed last night. We tried to tell them we were very uncomfortable about that. She also had an IV, I'll spare you the story on why.
She refused to stay in bed, tore out the IV, tore the bulletin board off the wall, broke her wheelchair when they apparently strapped her in there after she refused to stay in bed. The doctor was called to give her haldol (?) to calm her down. Even that didn't work until 8:30 this morning.
I don't know what we're going to do. Debra called the caseworker and left a message saying there was NO WAY we could take her home on Wednesday or any other day until they get her stabilized. Of course it being a weekend, there's not even anyone for us to talk to about what's going on.
I was so hopeful after yesterday, feeling pretty rotten about the whole situation today.
Oh Diane, my heart hurts for you. I'll be in touch soon. My week hasn't been great, but it doesn't remotely compare to what you all are going through. What a nightmare.
Hang in there - huge hugs being sent your way tonight.........Barb
Barb, how is your mom? Doing better today I hope?