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Spouse or Partner Caregiver Forum
Just need to talk to my friends(51)
We spent a quiet New Years Eve watching the movie Sully. Dick really enjoyed it. The day before, friends he worked with came for dinner and stayed over 6 hours! Dick was motioning to me, let's go. Not sure what the gestures meant until he whispered a little later, it's time to go, where's my coat. I said, this is our home. He looked at me with a blank look and then realized this was our home and laughed. I can see him withdrawing from conversation a little more and he gets confused with lots of chatter. He has a type of yearbook of pictures and bios of everyone in the division he worked in and enjoyed looking at pictures and reminiscing with the friend's.
All Christmas decorations are put away...just have to take down the wreaths outside. The next project is to finish going through the stuff in the basement and organize, toss, and sort stuff for a garage sale in the summer. There are bins of guages and stuff that I'm not sure what to do with...I'll ask his buddy who is self employed in same line of work.
Have a good day everyone.
Yes, Happy New Year to everyone.
I saw a quote that fit us perfectly: 9:00 is the new midnight. We didn't stay up for midnight, but both of us woke up at midnight hearing firecrackers going off. They didn't last long thankfully.
Today really should be a day of recovery. From the holidays, activities, etc that seem to have been going on. The quiet routine has so many benefits, for the both of us.
I checked the girls, came back in and got back in bed and slept until 10 - can't believe it. I still have to feed the cats. The fog has lifted - nothing like trying to count cattle in the fog when all you can see is a faint shape - good they're black instead of white or I couldn't see anything.
I heard the cow bawl a few times this morning so she's missing her baby. They mourn just like people do and most people wouldn't believe that. I think there'll be two babies in January. I really prefer them in April or May but Mr. Jasper wouldn't stay put in his pasture.
Sorry to say, Diane, you read it right. Sarah went home on Christmas Eve so they really didn't expect anyone to come on Christmas Day. Monday came and no one showed up. Sarah called and found out the agency they were going to use wasn't covered by her insurance so had to find another one. No one came on Tuesday. Wednesday a nurse came and stayed for two hours but mostly did paperwork. Did look at the PEG tube incision but no help with the colostomy. Thursday the RN who deals with colostomies came and just really upset Sarah, Friday,no one. It all seemed so perfectly set up - she'd go home and every day for two weeks a nurse would come - didn't happen. I haven't talked with them today so don't know what's going on.
It seems like all of the dementia patients don't like to shower. You might think it's because the shower is a little darker but I was using a clear shower curtain and it wasn't dark - or - maybe it's the water that scares them. I'd start at Charles' feet and work up but he still screamed - this was a few months before I lost him. I don't know what the fear is - but it's there. I also read the post from Sandra and replied. I finally decided it just wasn't worth the battle if he wasn't a little bit willing. I did use the No-rinse body bath some and the shampoo.
I've been wanting to watch the movie "Sully", too. Maybe this afternoon I'll get to it - don't have anything planned. I think Tom Hanks is a really good actor so I know it must be good.
I laughed about Dick wanting to leave - not remembering it was his home. Charles, too, kind of withdrew from conversations, partly because of his hearing. His sister and brother came to see him a couple of months before he passed away. He seemed to enjoy the visit but didn't participate much in the conversation. I'm so glad they came when they did. We think he did recognize them a few times. Too much conversation or noise bothered him, too. I think part of that was from his PTSD.
My decorations are put away - never were up. In fact, I don't think I have any - if I do they're buried in boxes in the storage building. I didn't even make a wreath or spray for the entrance this year.
Eagle - I'm ready for the quiet and the regular TV shows coming back on - only watched one Christmas show this year "It's a Wonderful Life" which I did really enjoy. Time now for bowl games and football and I hope, Curling. I'm ready for Spring and we really haven't had but one really cold spell but another is coming this week. I'm at the age that I don't like hot weather or cold weather but probably prefer the cold because you can put on more clothes but can only take off so many. Well, I guess I could take off more here but if I did here would come the FedEx guy and I'd have to hide.
The sun's coming out so better go feed the cats. Enjoy the quiet. As I was coming back in the house I told the dogs it was a new year and I felt kind of like I was starting out with an empty cottonsack - just like I do when I start another part of this thread at the first of the month. I didn't in December because we were right in the midst of Sarah's surgery before and after.
Be back later.
I just talked briefly with Sarah. She's still hurting so much she can't stop crying. Says she can't keep the colostomy bag from leaking. They've tried duct tape- nothing helps. Her nerves are shot with nothing to take and help.
I'm so upset at the hospital or agency. They did not follow through with being a support team. Left her on her own to try to deal with it and that is not right. She said Todd couldn't sleep last night and is resting. In a bit she'll have him call the ambulance to take her to OU. I told him last night if she had to wait to insist on something for her to lay down on. Also told her to take a pillow and her fluffy throw and if they won't give her something to lay on to put it on the floor or two chairs and lay down.
She says the smell is so bad she hates to leave the house. Told her not to worry about that. I think Todd should take some kind of action against someone because of the way they've treated her.
Judith, any suggestions as to how she can get seen sooner?
I posted a reply concerning the way Sarah has been treated and it's not showing up as a new post. She's at her wit's end and we need suggestions.
Todd's going to get her to the hospital but the wait is too long. Judith, is there a way to get her seen sooner?
I am so sorry with what is happening with Sarah and also as an RN, I am very dismayed. If there is an actual licensed Home Health Agency and NOT a community organization helping, use the Home Health phone number AND say that it is an EMERGENCY and that the patient is having a large leaking ostomy and it has been all over everything; cannot be controlleed and that the young patient who is fresh post-op is extremely upset and in a horrible emotional state AND that they need to send out someone on an emergency basis. NOW. If this is not done, the regulatory agency will be called to report patient neglect.
Sarah and Todd are going to have to get VERY noisy and insistent to get things done as needs be. Sarah needs to have better ostomy appliances and attachments and skin care products to meet her personal needs with personal fit. The ostomy will begin to shrink and she may need an adjustment in her appliances as time moves forward. I am so sorry for what is happening. They MUST ensure adequate fitting appliances for the ostomy. Leaks are in no way acceptable.
If Sarah has to return to the hospital, would her insurance pay for Skilled Care post hospital? Perhaps that could segue her into home while giving her time to learn her care and have licensed nursing backup.
By the way; there may be a nurse who tends to ostomy care from various agencies, BUT that does not mean they are a CERTIFIED enterostomal therapist. They need to insist on one that is certified in the specialty. If nothing else can happen to help very soon, then the ER would be the way to go, but Todd should insist she gets on a guerney quickly as she is fresh post-op.
NOTE: Most agencies send out a Home Health RN 24 hours AFTER a referral. The first person to come out is usually NOT the attending nurse, but a nurse who is a data gatherer as required by government mandates for agencies; that is why all the questions and why no hands-on care when that first person came out. No Sunday routine visits either for new patients but rarely. Holidays are an issue BUT Sarah is an urgent needs patient.
This is such a dreadful situation and I am so very sorry. I used to actually call the nursing department of UCLA School Of Nursing. They had a specialty program for certifing enterostomal therapists there and I would speak to the nursing director and she would roll out down county with a student and supplies and take care of all the problems at no charge when I could not get a certified therapist through a patient's insurance.
What kind of insurance does Sarah have? Some insurances have Case Managers by phone who can help plug in services and be an advocate for the patient.
I so hope that help in whatever form arrives swiftly; this is very demoralizing for Sarah and I can only imagine the depression and monumental upset this is bringing to an already difficult life situation.
Let us know how it goes Lorita, you are a very loving auntie.
New Year . . . . let's hope new and better than.
Yes, it seems most ALZ patients do not like showering, I know mine did not, did not like showering, also did not like having his finger and toenails trimmed.I really never did figure out what the reason was.Our weather is summer like 83 today, I am not complaining I don't like to freeze. I just don't like to have to put on all those clothe, too much laundry! LOL. A friend of my daughters was over for new-years, so we stayed up and the three of us ate too much and drank too much bubbly. Oh well. Sure am hoping the new year will treat all of us kind and gentle.Well gotta go feed.
Just talked to Sarah. They're getting ready to head to the hospital. I told her to make some noise- squeaky wheel.
Judith, I told her you'd called ostomyok and that the nurse may be calling her. I told her the name-Marvella- and she said she was the one who came out and was so nasty. Hopefully, there is another RN.
She'll let us know how it goes.
Thank you, Jo, for the information. I'll relay it to her.
Happy New Year.
Lorita, when I was volunteering at the ER, criteria for emergency action was chest pain or the patient was having trouble breathing. The third was a patient bleeding. I would think her pain and distraught would get her in quicker too. Poor girl, the fact she she was left stranded is unacceptable. I hate lawsuits, but in this case, the hospital and staff who didn't show up at her house should be held accountable. That's so disturbing. I sure hope this gets resolved, and soon. I'll be keeping them in my prayers. Please let us know how things are going when you hear anything. Try to stay calm too Lorita. You surely don't need anymore stress.
I forgot to say how nice for your cousin who got the pump and has made good progress. How exciting for him.
I need to go right now, but will check in tomorrow. Take care. Joan
I don't understand. I talked to you about 3:30 and Todd was going to call EMSA. I was so hopeful about the nurse from Ostomy.org. The Coordinator was lovely. How can it be that she is also the one the hospital uses. Do we only have one with the qualifications Jo says Sarah needs... only one nurse!!!!!!!!!!!!!!
Perhaps the noxious smell will get her seen quickly...
Let's hope she stinks up the ER so bad they take her right in. Tell her to scream in pain if she has to. That is sooo awful to be treated that way. Take care of yourself too, remember what we say when stressed? BREATHE.
I had your email but can't find it in this I pad. I'm not to good with the electronics.
I went to church came home and have done nothing. Lazy I guess.
My granddaughter and family are still at my daughter's, the 5 year old was running a fever today, hopefully he will be well before they go home Friday.
Everyone take care, have a goodnight.
I can't get in touch with Sarah but just talked with Todd. Before that I called the hospital and she's still in the ER. She has been seen by a doctor and that's all the nurse could tell me. Todd said he left to go home for a little while about 6 and at that time she hadn't been seen but was laying down and was getting pain meds. She has her phone but doesn't answer- may be asleep. Awfully long time to be in the ER. I'll let you know when I learn something.
Bless Sarah's heart, she must be exhausted. Glad they gave her pain meds. What a fiasco she is having to go through. She is one tough cookie. Prayers offered in her behalf. Now you take a deep breath too Lorita. I agree with others, there must be some demands made to the medical professionals today.
Thanks for the prayers, Tanya. Who would Todd complain to? In the VA it would be the Medical Center Director and Chief of Staff- not sure about the private sector though.
I forgot to mention this is her birthday what a way to spend it.
Just talked with Judith and with Sarah. They did blood work and a ct scan last night. She saw the ER physician and a surgeon. She has a raging infection at the colostomy site as well as where the peg tube was. They're sending her home and she'll see Dr. Dunn, her surgeon tomorrow. She's still hurting but they've written scripts for pain meds and antibiotics.
Judith is going to be with her at the appt. tomorrow and I know I'll feel better and so will Todd and Sarah. Both of them are so upset and scared they can't think what to ask so Judith will be so helpful in knowing the right questions to ask.
Just wanted to let you all know.
Oh my goodness Lorita. Thanks for the update, Judith is an Angel, isn't she. Do try to get some rest now. Continued prayers for healing.
Oh gosh; this is going to be so long, I'm sorry . . . .
Lorita, I so hope that Sarah has been helped. Sometimes Home Health agency problems stem from a very poor understanding by patient's families; this happens because people in difficult situations are totally unaware of how Home Health agencies work. After all, how many of us do know the in's and out's of such agencies? Sometimes agencies vary in how they approach and staff for care. Unfortunately, many agencies and hospital discharge planners are very poor at explaining things and many patients do not know what questions to ask and what to expect.
If one has a not-for-profit agency that often works more smoothly, but one still needs to be one's own advocate. My preference is to have a larger agency and not to deal with the small "Mom and Pop" type of agency as the larger ones often have much more capacity to meet challenges more dynamically.
Another issues is that of poor communications from both sides, agency and patient/family.
I always prefer to have complex patients discharged NOT on a Friday with a looming weekend or when up against a large holiday as this adds to the possible problems with followup care and agencies are often poorly staffed and/or have only on-call staff.
How are Todd and Sarah at communicating complex issues? Are they well spoken and clear in their communications? Who answers their Home Health call number after hours and on weekends/holidays? When someone answers the phone, is the patient speaking to an actual RN or to a phone clerk? In a difficult situation, one is best served by being firm with any clerk and state that they need to speak to an RN and insist if necessary. Personally, I do not like complex needs to be done through a "filter" of a clerk who may not re-communicate issues well.
Often, the Home Health RN must be contacted via a cellphone and may not be able to respond right away. If there is a huge, urgent issue and the response is poor or urgent care not being responded to, then calling the agency and demanding to speak to a supervisor may help even if the supervisor must be contacted at their home . . . however, I would only do this in dire circumstances.
It would be quite rare and only in the most serious of circumstances for the patient to be seen on the day of discharge from the hospital. Insurance does not usually cover the discharge day for Home Health because the patient has already received licensed nursing care in the acute care setting on that day. Most often, the Home Health RN comes out 24 hours after the discharge, but I have seen it take 48 hours. If there has been confusion regarding the order, or if the order has not been processed properly, then there can be a variety of problems including a delay in the first visit.
NOTE: I prefer for the patient/family to contact the Home Health agency when at home or even before discharge and ensure that the agency has actually received the order and that the patient is in the loop and that a visit has been scheduled; one can find out the date and approximate time. CAVEAT: It is very upsetting to family to have a time of visit and have the RN show up hours later. This can happen secondary to unexpected RN complex patient visits or emergency; BUT the RN or the clerk from the agency should call and inform the family of the change in visit time. However, this frequently does not happen.
Personally, once the RN is assigned and at the time of the visit of the primary RN who will be the permanent RN, I would ask the RN to please call if the time of the visit is going to be two hours or more off of what had been scheduled. This is good for both the RN and the patient/family.
If there is a problem issue with one's condition, then a call needs to be made and an RN spoken to. One needs to be VERY clear in communication and be very detailed and express the problem and needs well. With a leaking ostomy, one may be instructed what action to take on the phone, BUT if one has tried everything and nothing works, then it is okay to express that and that an RN is needed.
If the stool keeps leaking around the stoma, the skin will be at great risk for rapidly breaking down.
NOW: IF a Home Health agency has been ordered and is on the care; then one should NOT be calling a second entity and having a second person coming out. I am not clear in how this is working with Sarah. Does she have a Home Health Agency AND the Ostomy Care company? If the ostomy care company is ONLY for ostomies and there is the other agency, that may be causing complexities.
If the Ostomy Care group is Sarah's primary agency, are they good at other facets of care? What are their night and weekend/holiday staffing like? Polices regarding that? Is there a Social Worker to make visits or at least one visit? Will they order a bath aide for Sarah for the early period until she is able to get up and around much better? Will they order Occupational Therapy to do an assessment of the home and make reommendations and assist Sarah on easier ways of managing? Is Sarah ambulating easily, or is she extremely weak and decompensated? If so, has the agency ordered PT to do an assessment and some visits to help her? These are all things that should be assessed. Sometime specialty agency focus gets a bit loose on the holistic aspect of the patient.
When there is a new ostomy patient, the psychological care of the patient is extremely important; this is a significant change in a person's self-image and much emotion can be involved and a person can be overwhelmed by it all. Stress and emotional upset and severe anxiety can affect healing as well as being able to manage. Emotional support MUST be present as it is such an important part of the patient's needs. If necessary, medication can be prescribed to help.
Sarah and Todd need to be informed of policies regarding visits, urgent matter visits, night, weekend and holiday policies of the staff. Here is what I expect the Oklahoma regulatory agency for Home Health may be:
State of Oklahoma Health Department, Home Health Division, 1000 NE 10th, Oklahoma City, OK 73117-1299; Hotline at 1 (800) 234-7258 is available from 8:00 a.m. to 4:30 p.m., Monday through Friday
I have lost my ability to "bold" and I am also afraid of losing this post, so I will sign off and come back on with a little more in a second post to you.
Hi again Lorita, so hope Sarah has been helped. This is personal of me and I so hope I am not offending, but I have been somewhat flummoxed by the MDs and other providers approaches and responses to Sarah and feel bad for what she and Todd have been enduring.
She has been a very long term complex patient and sometimes, that long term provision of care with no end point or success can breed a bit of apathy and even negativity with some medical providers. I am NOT saying that this is happening here, but as a very experienced RN, this sort of dynamic flitted across my mind.
Also, I wondered if you think that prior to the surgery that Sarah may have become somewhat dependent on pain meds? Does she have ongoing long-term anxiety that causes upsets for her? If so, I hope she has medication to help with that if necessary. What sort of personalities do she and Todd have? Is there any hyper-emotional aspect with either or both of them? (Considering the cirumstances of long-standing that would be understandable.) If there are highly emotional aspects within communications could that be clouding clarity for providers and muddy the waters?
It seems that someone needs to take the helm and start steering the care management ship for Sarah by being in strong command of all facets of care and organizing everything on her behalf. One primary healthcare provider to organize and set all into place with no confusion or lapses. Hopefully, a strong primary RN from Home Health can do this; and if a Social Worker needs to be part of that leadership with the RN, then one can be called in by the Home Health RN from her agency.
Once Sarah feels safe and her care providers are responsive, she will be able to relax and rest more to enable her to heal more readily. It would certainly add much.
I so hope all will begin to turn around and that Sarah is receiving the amount and type of personal care she needs. Personal fitting of high end appliances/products to help her ostomy and prevent leakages along with more in-home patient teaching and support of both Sarah and Todd are of high necessity and I so hope she gets all that is needed. Todd needs to be able to receive support too, it is hard on both of them and it is happening to both of them.
Please keep us posted, I think of Sarah and Todd often and know that as Sarah's Auntie Lorita, that you are very concerned about what is and is not happening. May this week be better and may Sarah begin to see the sunlight in positive outcomes very soon.
Hug to you my EBV friend,
First, Judith, Sarah just called. She had called Dr.Dunn's office to confirm her appointment and was told he no longer sees patients on Tuesday. Her appointment is now at 1:45 Thursday.I left a message for you but thought I'd post this just in case.
Jo- sorry I really don't know much about what is going on. It was not good that her surgery and discharge came just before Christmas and New Years and on a weekend. I've asked her about which agency would be coming and I don't think she's too clear on that or who to contact. Sarah us very laid back most of the time and pretty stoic and tends to let things work out. Todd tends to be excitable and kind of hyper about things, Sarah's problems for sure. I've always told Sarah to make a list of questions before visits. She assures me that she is but I'm not sure.
She had an appt. With a psychiatrist scheduled Dec.12. It was rescheduled to Jan. 12.
She's been off all pain meds for several weeks. She had been going to a pain management clinic. She'd get a script and was told she had to return with so many of them at the next visit.
I don't think I've addressed all of your post but will try later. She needs a good outpatient social worker to keep things in order for her. Is there such a thing in the private sector of medicine?
I was going to get feed but called and they're closed. Their suppliers are closed today. I'll call early tomorrow to see if they have my feed and get in before it gets too cold.
Lorita, no need to answer any questions. The way for Sarah to get the services including a Social Worker to assist would be through her Home Health Agency. If she does not know what agency she has, she can contact her Discharge Planner at the hospital and she/he can look it up in the records; however, she should have paperwork from the agency when they came in to do their assessment.
She may have to take the bull by the horns and contact them herself to find out what the plans are for herself. The RN who assesses her would have set "frequency and duration" of visits. This is a requirement placed on the agency. This means how often they will come out and for how long. This can be adjusted by the RN at any time to meet the patients skilled needs. That is the key word, "skilled." Home Health can only stay on service while the needs are skilled and must be documented as so.
The Pain Clinic has adjusted her pain treatment and must be monitoring her pain pill useage by counting her pain pills that she brings in, that means they will probably keep their service with her at this time. If she medically needs a change, they can adjust their plan.
It is unfortunate that her discharge was on top of the holiday; that is probably where the confusion began. NOTE: It is also important that she align herself with ONE agency at this time to get her care in line and organized. Her insurance will also only pay for one agency, so she would not want to incur a debt for herself. It would probably serve her best by seeing the Home Health agency that can deliver the ostomy care with the most additional services in a holistic way for the entire scope of needs; since both entities have the same ostomy nurse, then this seems as though there is no issue with that.
Sarah can ask about a bath aide if bathing is a taxing effort for herself at this time, and she can also be assessed for Occupational Therapy who can assess the house and show easier ways for her to accomplish various tasks and needs for herself; PT can also come out if she is weak and decompensated. At least one visit can be done by OT and PT to assess her needs and provide information for strengthening if nothing else.
To have Home Health, one needs to be "home bound." But that means it is a taxing effort for her to get out and about; and that she needs assistance of another person to be with her or has a need for an assistive device, and her outings for the appointments or other important needs is of short duration. You can look up criteria for "homebound" on Google if you wish.
I so hope that the supplies for her needs were better adjusted and that she is able to gain some relief from those problems. There is often a learning curve and some issues to be worked out at first, but that should be addressed and taken care of by the RNs addressing her care at home in an organized and dynamic manner. They may have to come out daily at first until the ostomy is managed; they can choose to do this if the medical necessity is there.
Let's hope that all will begin to fall into place and that Sarah can finally begin to find peace and comfort and move forward with less strife than she had prior to her surgery.
Jo...ostomyok.org is, I think a support group not an agency. How their nurse, a volunteer, turns out to be also with whichever home health agency is supposed to come out is bizarre.
Would you please take a look at the site and give your opinion. Again I think it is just support...nothing professional.
I do not understand how the patient is supposed to set things up with an agency. Why isn't that done by the hospital prior to discharge with relative info given to the patient.
It's been a while since I've posted. So much going on. Poor Sarah and Todd! I hope they are getting help soon. Bless you, Judith.
Has anyone heard from Sharon? We need an update.
We had some really good times from Thanksgiving to New Years. I wrote about it in a new post, but nobody has responded yet. Bob made it through all the activity and travel, but did withdraw or retreat to his computer a lot.
Today is our first quiet day at home with no company and nothing particular going on in at least two weeks. It feels good to do nothing special for a change.
Our temps were in the 70's today, 60's Tomorrow, going down from there, until next week, back up in the 60's. We had a good rain overnight.
I made chili for dinner and had it with fritos. It was good. One cooler day last week I made baked potato soup. The kids were here, two ten year-olds, an 11, and one 14. They kept filling a plastic mug with warm soup and taking outside with them.
I'm still reading to try and catch up here. Good evening everyone,
Hello: Home Health would have been ordered by the physician prior to discharge and the Discharge Planner or Case Manager at the hospital would have sent the order in.
Since Sarah did see the RN from Home Health, there was an order and she is admitted to an agency, but things are a bit topsy-turvy. Basically, it would be good for Sarah to contact the Home Health agency and clarify her service and when to expect her RN back out again.
When the RN comes to visit, Sarah can then ask questions about how often the RN will come and what the policy is regarding after hours and weekend/holiday visits and any other questions she has. If she needs help with bathing and hygiene, the RN can order that and any other possible helpful entities such as OT and PT but ONLY if the need for same is apparent. Sometimes when the patient doesn't appear to need ongoing OT and PT, the RN can order a one time visit of these specialties. When OT comes, that person would assess the house for safety, assess the shower capabilities and bathroom; Sarah would be shown how to perform different functions more easily that she may have difficuty with now. PT would assess her for strength and mobility, etc. That person can give strengthening exercises to be done progressively as her condition allows. A Social Worker can come out and do an assessment and discuss any concerns Sarah wishes to share; however, as with anything else, there would not be ongoing visits if there is not a need. Much can be done in one visit.
I like the multidisciplinary team approach when a person is so new after such a surgery; that kind of support can carry a person across the roughest spots.
Judith, I did call that organization that sees ostomy persons. I contacted each listed contact number but all were on answer machines and the holidays were upon us and I did not have time to track them down and there is also a time difference between the states. I can try them again and see what's up; but you are one smart cookie so you have probably scoped all that out.
If the RN seeing Sarah is competent and experienced with ostomy persons and is capable of meeting the challenges at hand it would not matter if that person is certified as long as that competency is there along with experience. However; if that person is not Certified and if she is unable to meet Sarah's care need challenges, then most Home Health agencies have contact numbers for Certified Enterostomal Therapists and one can be called in. However; I would ask who picks up the cost of that. In some instances the agency picks up the tab as it is part of their service that their RN could not provide; at least that is the way it has been out here where I am.
It has been some time since I have cared for an ostomy patient as I have been in Admin. for so long; but basic knowledge is pretty much the same. Once all is under control and the stoma has shrunk which all do, and the correctly fitted appliance is doing its job, there are even very feminine covers for the appliance. There are also oral tabs that can stop odors. I so hope that the RN is addressing this with Sarah. Sometimes a person can feel so undone by what they are experiencing in that way that they just feel emotionally raw. Since Sarah is feeding with tube the solution may cause an odd odor but that should be able to be helped. Hopefully the RN is addressing this for Sarah; that needs to be part of her care.
Also, the RN may need to go over the care steps again and get Sarah to do a return demonstration so it can be seen that Sarah understands and is able to perform the functions she needs to. Hopefully there is a booklet with drawings to follow or at least some sort of written guide.
Here is just one association for support for those with ostomies and if one looks through Google, one can find multiple associations that are specifically for persons with ostomies and one can also Google specifically for online support groups. Lots of information can be shared by those with experience just as we share and support one another here.
In some areas there are persons with ostomies who are volunteer visitors and who will go to homes or hospitals to visit with a person with a new ostomy; they are strictly social and offer no care but they can discuss problems and share their successful experience with how they adjusted and how good life can be when moving forward from that fresh post-op period. At least we have had such groups out here locally.
By tomorrow everything should be back in place from the holidays and hopefully that will make for a smoother course from here on out. Sure will be hoping for the very best to fall into place and bring much needed relief.
Lorita, I can't believe all that is happening with Sarah. I'm sorry, and you must be worried sick. I hope Judith can get some answers for them. Maybe they can set up home care while they are at the appointment. The doctor started the process for Harv after surgery. Judith is an angel, and so willing to help Sarah and Todd. She's a great blessing.
I'll be praying for them. She's still on our church prayer chain too, so hope it starts helping. Take care and rest when you can.
Tanya, sounds like you had a full house with lots of fun.
My house cleaner came today and wiped away the remnants of the fun of Christmas. It was so nice to have everything clean and smelling good again.
Have a peaceful night. Back to normal days tomorrow. I'm ready. Joan
Jo...I copied your reply and will do my best to document what will be happening and also who to contact if it doesn't.
It seems the hosp set Sarah up with a service that does not accept Sarah's insurance. I will also do my best to see how that happened. I will ask Sarah is she want's to keep me on her HIPAA release and go and get med records and see if I can get them sorted out.
It is hard to manage all of this, any of this, when you are ill. Todd is terrific but I kind of think this is his first rodeo in the medical arena. Hopefully some of recovering from our screwups will help this young couple. I do make lists and carry pad and pencil...lol
If all nothing else I can look experianced!~!!
Thank all you ladies for your input about trying to solve the problems Sarah's having. I'll try to digest some more of it tomorrow and share with her. I do think she said PT has seen her and said they didn't think she needed PT. The day the paperwork person came another nurse was supposed to come. She called and said she had an emergency so was going to come at 8:30 - didn't show and when she called again to come at 10:30 Sarah was already in bed. I think she knows the agency so maybe she can make a call tomorrow morning when she feels better. I know there must be more nurses in a city as big as OKC that can deal with colostomies besides Marvella. For some reason she and Sarah just did not hit it off - Sarah said she did a lot of pushing on her ostomy and caused her a lot of pain. Maybe she was having a bad day.
I'm completely exhausted tonight. I think spending half the day Thursday in two towns, then feeding the next day, resting some Saturday except for the normal things, then helping feed hay Sunday and feeding cubes today was a bit much. I did manage to fill both water tanks late today - had to make two trips to one and three to another to get the water shut off. Never have gotten the float valves on but they're hard to handle in the wintertime. I've dozed off a couple of times today - once just a while ago. I was really hungry and thank goodness still had some soup I'd made a few days ago so heated that and shared my crackers with Barclee and Stormy.
I'd planned to go into town in the morning before it got too cold to get feed but if I'm still so tired I'll wait - don't have to feed until Friday. It won't matter if it's cold when I go as long as it's not snowing. Amazing, isn't it, Jo, how heavy your feet can feel when you're so tired. I took about 40 minutes to feed today, rested between sacks of feed - the last time I did it in less time but I got it done. Barclee is now wanting some Cesar so I'll have to make a trip to the kitchen pretty soon.
I tried to call Sarah a while back but no answer - guess she was sleeping. I do hope Todd got all the supplies she needed from the surgical floor. He was going to try to work some this afternoon - don't know if it was on the house or in his business.
I feel like I could sleep a whole day - on my side preferably, but can't do that because of the costochondritis.
Thank all of you for the well wishes and prayers for Sarah and Todd - poor guy needs help, too. He's stretched so thin and is so worried about her. Maybe, as Jo said, since tomorrow isn't a holiday things can get on track - too many holidays and weekends really upset things. I realize things don't always go as planned but this really takes the cake. It all sounded so good - go home and have a nurse come every day for two weeks to help with things - didn't happen.
I'll try Sarah again before I go to bed. Again, thank you Jo and Judith for making heads and tails of all this stuff. I'm completely at a loss when it comes to something outside the VA - never had to deal with that except for my sister and a little bit for daddy. VA is so much easier - no hiccups with Charles' care. But it will get straightened out and things will be okay. I'm sorry Sarah has the infections and I hope they get her medicine. She had a call from the Pharmacy saying one of her medications would take longer to fill - don't know why. Seems there's always that problem. But at least she did get to see a doctor or two.
Going to get off for now - sorry you lost your post, Surfergirl, that can be so frustrating. Thanks for the good thoughts and prayers.
Thank you, Joan, for keeping Sarah in your prayer chain. I know she appreciates it - she always tells me to tell you all thank you. I know you're glad you got your sparkling clean - wish mine was - nothing really has been touched since September. We're just wading through things but it's only us so guess it doesn't matter too much.
Dana, thank you so much for your well wishes. I'll read your other post when I rest a bit.
All of you are right - Judith is an angel. I remember years ago when I hadn't posted for quite some time and she found me through our vet. Not many people would have gone to all that trouble. He told me at that time that she seemed to think a lot of me and it has proven to be correct. All the help with my sister when I was trying to get her placed and the trial and now the visits to the doctors and hospitals for Sarah. No friend could be better. Judith, Sarah told me she thinks of you as her aunt - hope you don't mind.
All of you are the greatest people in the world - caring so much about people you don't even know. I know I talk about Sarah, Todd,Scarlet and my sister so much you probably feel like you know them - but still, to know there are people out there who are so caring brings tears to my eyes. When I found this forum it was the second luckiest day of my life - meeting Charles was the first. Okay, see you tomorrow or maybe later tonight. Rest well.
It sounds good to have a house cleaner to wipe away all the remnants of Christmas. Today I mopped up smears from the wood floors. Probably dribbles of hot chocolate and maybe potato soup, and whatever the grand dog tracked in. But we did have fun. It IS good to return to more normal days now.
Surfer girl, I know what you mean about the love-hate relationship with the computer. I guess we all feel that way at times.
Ok, the truth is that I am not doing anything that any one of you would not do if you lived close and had the time but thank you for thinking well of me and I am honored to be a pretend aunt.
Think I told Lorit personally that her sister is about 2.5 blocks from me. Can you beat that?
Good night all!!!
Hadn't meant to post again but I just talked with Sarah. She sounds pretty good. She said the nurse, Marvella, came out today and things went better. A friend of theirs who used to have a colostomy had her as his nurse so maybe that helped. I wrote this post a while ago and lost it so I'll probably forget all I said.
Another nurse is coming out tomorrow. Sarah's weak because she hasn't fed herself in two or three days. They told her not to today but she will in the morning. The three doctor who are with Dr. Dunn saw her early this morning. It was their consensus that she probably should be admitted but Dr. Dunn said she could go home. She got several bags of IVs last night with antibiotics in it and some for hydration so guess he thought that would be enough until Thursday.
Poor Todd's running all over town trying to get her meds tonight. One place couldn't give them because it's a liquid so he had to go somewhere else. He'll be worn out so maybe they'll both sleep.
She's tried everything for the odor - Febreze and pet spray. Jo, I think it was you who mentioned a pill that would help. Do you remember the name of it? I told her to ask everyone she saw about it.
Today was her 46th birthday so probably wasn't very enjoyable but I told her each day would be a little bit easier and I hope it is.
Dana, baked potato soup? Many years ago there was a restaurant in Tulsa where Charles and I used to eat that had that - so very good. Could we please have the recipe? I love potato soup.
Judith - you're a pretend aunt and I'm a pretend mom. Sarah is like a daughter because we were with her so much when she was growing up. For a long time Charles and I kept and cared for Sarah and mother and daddy took care of Eric. We were with both kids most of their childhood. I have the cutest picture of her when she was about three or four. She had on a little red negligee over her gown and was standing outside in the wind with her long, dark hair blowing. I'll try to find it and take a picture of it and post it.
Judith - my sister seems to be doing all right in the MCC - I do thank you so much for the offer to check on her if the need arises. She seems pretty happy there and is adjusting and for that I'm so thankful. We went through so much trying to get her to a safe place.
Okay, this time I'm really going to quit and get to sleep. Tomorrow, I hope, will be a restful day.
Lorita, I came across this link from Sloan Kettering by accident. While this was orignally written for patients who had ostomies secondary to cancer diagnoses, this link contains a huge amount of information for people who have had ostomies for any reason. Some very good stuff.
Keep scrolling down, down, down and see all there is. It is chock-a-block with all sorts of practical information. At the bottom there are listings for books on living with ostomies as well as a large listing of supply companies that evidently are found to be of good quality for ordering supplies. Really, there is SO much information that I was really astounded. There is also a section regarding resuming sexual relations which is very informative.
CAVEAT: If you decide to share this with Sarah, she should ONLY do whatever her physicians prescribe for her specifically. There is also the option of sending her only parts of what you read. Here is the link:
This link is NOT about cancer care; it is all about ostomy information. They certainly do have a very active multidisciplinary outreach for their patients. How I wish this were so everywhere.
Judith is a marvel; I would like to be adopted by her . . . . I think she could establish a second career as a Geriatric Case Manager. She is made of that kind of stuff that is just perfect for such endeavors. Lovely, lovely lady and lovely loving deeds.
Oh yes; the odor management issue is also mentioned in the above link. There are various oral tablets and some seem to get results from them, others not so much. One can find all sorts of these products online. There are also drops that can be used inside the bag as well as "home" remedies written about online by people with ostomies.
Home Health RNs and any helping provider really need to make this one of the priorities in the care plan as it is SO important to the person who has a new ostomy. This should never be overlooked; we were even taught that in nursing school as a basic patient care need. It is important for the emotions which are pretty well in overdrive after such a surgery, et al.
It is 8:15 here and soon I will skulk off to bed to read a little which will eventually put myself to sleep. For some reason, last night I woke at 11:30; then again about 1:30 and could not get back to full sleep. I lightly near-dozed for about half an hour around 4:00 but then was up for good. It is so rare I have a night like that. I have found as I "mature" I fall asleep in a slick second, but once in awhile staying there is not always on the agenda. My usual amount of sleep is four to five hours; been that way most of my adulthood. I had four kids, went to university at night for the Masters while working days and then had to be up about 4:00 to 5:00 am to get ready for work. I've never been able to sleep in; wish I could. If I did, my family would think I had shuffled off this mortal coil.
I am not adverse to a little unplanned snooze in the afternoon but only do that once in awhile by accident when watching news on TV or reading while sitting on the sofa.
Be sure that Sarah knows when she goes out for her appointment to take extra ostomy supplies with her along with some wipes and paper towels and a plastic bag in a small carry tote. Just in case. As her body heals and the stoma becomes a bit smaller and the area heals, the problems being experienced should be able to be dealt with much more easily and have become resolved. I can only imagine how stressful this is for her at this point in time.
Did you say she has an infection? I have to go back and re-read; I must have missed that. Is it the wound or other site? I'll go and look at prior posts.
I'm yawning and about to turn into a pumpkin . . . . off I go. Good night and good morning if you read this after you wake up.
I looked and found the post re the infections; I am so very, very sorry. I cannot imagine how Sarah must be feeling by now. It would be wonderful if her care agency could assign a social worker who is at least an MSW or better who can make home visits to just talk with Sarah for support; it would be great if psychologists made home visits, but I doubt that is a service that can be found very often. It must be a major taxing effort for her to get out of the house to appointments.
Sarah has been mightily on my mind when I went to bed last night and again when I woke up this morning. I have sent prayer up on her behalf. She must be exhausted from head to toe on every front. Todd too must be overwhelmed by all that is happening.
Hopefully the appointment today will glean some light and that the care needs will be seen to.
Lorita, this must be wearing heavily on you and the tension will of course affect the EBV fatigue. Yet; you are still doing so much with the stock, I am as usual in awe of you. Dear gumption is off the scale on the positive side of the ledger.
I am going to go and take a look at the link Judith gave for the ostomy support group; if a person from support actually did hands-on care then they are not just a support group, they must be licensed for care and this would have to be sussed out. I will try and see if I can find out what's what. However, it could take time as the last time I tried calling each number, they were all on answer machine.
If I am understanding correctly, Judith is going to the appointment with Sarah and Todd today, I am glad of that and I am sure she will be detailed and to the point with questions and as an advocate on Sarah's behalf; Judith is really good at that and she is smart, smart, smart and not afraid of those in positions of "power." Good that Sarah gave her HIPAA Waiver rights.
I have to go and research dishwashers on Consumer Reports online and I am not happy with what I have been seeing out there from folks who have had nothing but problems with the new dishwashers; they are nowhere near as effective and especially nowhere near as well-made and dependable as the older ones. Just like our washing machines and dryers, etc. that they have messed with. The cycles on the dishwashers must run far longer to clean because of government mandates to save water EXCEPT because of that, it is taking much more electricity. Geeze; no common sense. They couldn't even leave our toilets and light bulbs alone. Guess there is not too much more they can mess with, I think they'vee pretty much got to everything they can. However if there is a way, they will.
When our newer models washing machine and dryer died in early use, it was the electronic panel that went out. It cost a bloomin' fortune to fix to the point of ludicrous and I hated the machines. I was always teeth on edge that the lid to the washer automatically locked when the machine had water in it and IF I forgot to add an item; well too bad, because the ony way to open the machine was to have the machine empty entirely and to waste the water and detergent already in use and have to fill the machine and add more soap again, not to mention it controlled the water temp and the amount of water which led to some unhappy results. WELL . . . . I got lucky; I found the Speed Queens. The lids did not lock, the temperature and amount of water is user controlled and they are SO much more efficient/effective and the cycles are WAY, WAY much shorter. I got one with dials, not electronic panels. Evidently the government has since got to Speed Queen and I think the new models now have to follow the locked lid, etc. guidelines. Sometimes I just despair.
I realize in the scope of the universe and in matters we face that these are but small things, but doggone it, it would be nice to have quality and common sense surface again in manufacturing. Won't hold my breath though. I do realize how blessed we all are in this country; it sounds petty to be complaining. Now I feel guilty.
We are going to get quite a bit of rain end of the week across the weekend and it looks like the Sierras are going to get about another 15 inches of snow. Way above our usual amount of rain and snow for this time of the year. Our rainiest months are usually in February. I am an old U.P. of Michigan gal, so this is easy-peasy by comparison. My elderly widowed friend in the U.P. is having quite a hard time this winter and the cost of heating is astronomical. They get snowed in at times and that is not good for those whose health is poor. Sometimes even ambulances can't get through and there is no way to get prescriptions. Texas and nearby states and the East ar getting hit hard with storms; I so hope things ease up soon for everyone. Mother Nature is not always a loving mother.
Here's wishing everyone a good day and some unexpected smiles to come your way,