Kelsey is very sick. Angie was sick for five days. Very sick. Kelsey chain smokes and her lungs sound horrible. She is throwing up and won't eat. What timing - with Brett and Colton coming. I admit, I am also being self centered - I really really really don't want to get sick. She has spent two days in bed. We were not sure how sick she was yesterday but today she is miserable. She has such a high tolerance to pain - you know if she complains - she is really sick. I feel like such a bad mother as I am caring for her at a distance. I had to change her sheets because of her incontinence but I am pretty much making her stay in her room. I bought her lots of juice and something called Zicam. I know she would like to be cuddled but she is coughing like crazy. I am so afraid of getting sick. Especially now - not knowing why I am bruising so badly and with the family coming up. What a day. Doesn't it always happen when you have plans
Spray doorknobs, phones, etc. with Lysol spray often. And, if you have any, use one of the waterless anti-bacterial cleaners for your hands (Kelsey's, too, if you can). I'm sure you know all this. It's just all I can think of to help.
I hope you have a wonderful visit with Brett and Colton! I think of you all the time and am so glad to see you back!
Hope you feel better soon.
Hugs, Nini
Roxy- So sorry Kelsay is sick, it is hard for us especially with germs etc. My little girl was ill and needed lots of cuddles and i had had enough of not being able to do it so I threw caution to the wind, went and bought a surgical mask, lots of anti bacterial hand lotion and cuddled lots. I never got sick at all. It doesnt matter if she wont eat but try to get lots of liquid in her.
Let us know how she is
Take care
Roxy, Everyone here has the best advice. Also, keep your hands away from your face. That will help you from catching anything too. Is there a doctor you can call on saturday?Sounds like you have your hands full, but don't forget to take care of yourself!
Gale :)
I have not been up to driving or I would get a mask and gloves.. I am also broke this weekendJust wondering... why doesn't someone take Kelsey to the Dr? She may be dehydrated if she's not keeping enough fluids in. You've been given great advice and I really hope you don't get sick too: maybe you could tie a hanky around your mouth and nose when you have to be near Kelsey.....Good luck to you both
Roxy- you need to get a Dr to her if shes that bad.Dehydration can happen so quickly.She is drinking and this morning she ate M and C at her request. She got me up to make it. There was pee all down the hallway and the bathroom. I had to clean that up and do 6 loads of laundry.
I woke up feeling horrible. This is gross, but I had the worse BM I have ever had. It took like two hours to get it out and I was in agony. That happened the day I had the stroke so it was really making me paranoid.
I have spent the day in bed. I am getting sick. I feel terrible. She slept on every piece of furniture in the house and used her fingers to get food out of bowls in the fridge. I don't think I had a chance not getting sick. Brett is coming tomorrow. I feel miserable. I don't even want to see him. Kelsey is still sick as can be but I get Gatorade down her and she ate today for the first time.
I am going back to bed. Did I say I feel terrible
PS I missed my Humira last time because it was froze. Now I can't take it again
PS I don't know how you nurses do it !!!!!!!! MY God you guys should be applauded
Hope things are better tomorrow.
No echinachea(no idea how to spell that). Like crispy said---not for us.Pincusion, I did not take Kelsey to doctor. I don't drive, especially when I am not well. She has the exact same symptoms as Angie and her son had. She is drinking Gatorade and ate twice yesterday, even though she threw up once.
I am up at 2 am. I was sleeping on and off all day except when she would get me up. She is in the livingroom coughing like crazy so I can't sleep now. I gave her cough medicine and cough drops. This is a nasty flu. Having said that - I don't think I have it. I felt horrible all day but as I said - I had the worse BM, I mean painful and sweat pouring down my face with lots of blood. Sorry so gross. Then I had to do laundry and take care of her. I felt horrible. But last night, when I woke up, I felt so much better that I am hoping I don't have what she has. I think all the stress just made me sick. I have been so crazy trying not to get her germs to no avail. She is not careful at all. If I fall asleep, she pees the bed and doesn't want to change it, so she will get new blankets and sleep in my bed or other furniture. Then I have to go back to changing all the linen. Exhausting. I hope you are right Cassandra.
I might take her to doctor tomorrow but she has the OR health plan. Very hard to get her an appt. which sucks. It is worthless insurance as very few doctors take it. She does have an excellent psychiatrist who I really trust and like. I am broke. I spent a lot of money working in the yard and doing things around the house. Now I am flat broke until I get another check. My credit cards are maxed. I am bad about money since I have been homebound. I put all my money into projects around the house/yard and going out once in awhile with Kels. You know how it is when you get a new house but basically I should have set some money back.
It does not feel like tomorrow will be much better. I cannot get ahold of Brett but he is suppose to be here late Monday night. If she is not better, hopefully he will give me the money to take her.
Poor Angie. The house is so gross. She did this great job cleaning on Friday and now the whole thing needs mopping and sinks and toilets. I have been cleaning the best I can but I am hurting.
Thanks for letting me whine you guys. All I have done today is clean up messes, sleep when I can and I have stayed logged in so I can WHINE. Talk tomorrow. LOVE
How are the two of you feeling today? What a nightmare the past few days have been....I'm so sorry. If you can't get Kelsey to the doctor today...is it possible the doctor could call something in for the two of you and Angie could pick it up? I'd be careful taking anything around the house without speaking to someone at the doctors office Roxy....you know better than that lady. I apologize for not posting earlier, I've been really exhausted. I have been reading though and wishing you both well.
Peace & Love....Neasy
Sorry Roxy I wasnt having a go at you, its just these bugs can spread like wildfire and if the bug gets too serious it can have a serious consequences. I would hate for you or Kelsey to end up in the hospital.I know you aren't really into all the positive imagine stuff; but it really could be useful in this situation Roxy. Instead of seeing all the mess and all the illness try to invision yourself and your home in wellness. Picture calmness while you are resting. Don't continue to tell yourself that you are going to get sick. Tell yourself "I'm not getting sick." "I'm feeling strong and responsible and I can care for my ill daughter and manage all I need to do". Do not tell yourself that every illness could be life threating. That's not good for you....or your daughter to hear that over and over again.
I hope you aren't offended by my advice....I just hope to offer something you can use. You have absolutely nothing to loose at this point and much to gain. I'm not in anyway suggesting that your attitude brings on these problems.....but I do think it might prolong them. You see how everything seems to snowball? A negitive thought process brings on more of the same. Try to reverse the process my constantly feeling and speaking only of the positives. If there's no positives to speak of try to just invision them for a while. What can it hurt?
I hope you and your household are in good health soon. Hang in there. This too shall pass.
I know Lovie. It is just so hard not to be angry at her. I tell her, I will change her sheets, bring her anything she needs. All day long she would still come out and cough right at me, she has used 8 blankets where there were none for me. Those same eight I have been washing over and over again. The reason she throws up is she chain smokes, she even smokes now. She coughs and all that mucus gets in her stomach. I don't think she needs to go to the hospital. Her symptoms are the exact same as Angie and her son's symptoms when they had it. What angers me is I have two couches, a recliner, my bed and her bed. She plays musical chairs and insists on sitting on every piece of furniture in the house, using a different blanket. She won't eat healthy. She ate frozen pizza and M and C. It is HARD. She is so inconsiderate. If I did not have RA this situation would frustrate and anger me. She is mentally ill but she is smart. It is hard for me to believe she does not get this. I have been telling her to be careful and how to be careful over and over again. She won't wash her hands. She takes OUR food out of the fridge with her germy hands and won't even use a spoon. I am trying today to have a positive attitude I won't get sick but this is a bad sickness. I cannot imagine getting it with my RA. I am trying but I am exhausted and I feel evil for feeling so angry.Just continue to try to put thoughts and images in your head that show the situation in a different light. Don't follow up a positive thought with a "but" that's counter active. Just keep repeating these things in your head and keep thinking of good thoughts even as you drift off to sleep. Use it as a sort of medication exercise. As you begin to wake up do the same thing. Over time you'll see your situation turing around.
Don't give up. You're a strong woman.
Just an idea: Once you get the blankets washed, maybe you could stack a few in Kelsey's room and then put the other's away where she won't know where they are. That way she can only mess up the ones alotted to her before SHE has to do a load of laundry. Have you taught her to run the washer? Is this a chore you two could begin to work on togehter so MAYBE she could respect the task a little more? Just and idea. I have no idea if she can manage something like that but I know even with my younger kids once they realize a chore is going to be involved with a certain action they think twice before doing something.
Is there a medical reason Kelsey is not using the bathroom. She's 24 years old and you describe her as smart. Therefore if there is no medical reason, she is soiling your home on purpose.
You are not helping Kelsey by letting her to get away from stuff you wouldn't accept from a 4 year old.
If she can't use the bathroom in a timely manner then she should be wearing depends. If she refuses to then she should not be allowed outside of her room and you shouldn't clean up after her.
If she is functional enough to be outside a facility or group home then she should be expected to behave as such.
I know you love your daughter but unless you get tough she will never be able to function in society even marginally. Her behaviour will get worse if you don't draw the line. Mental illness is tough to deal with but even for the mentally ill there must be consequnces for actions.
Roxy- what Lovie suggested makes a lot of sense with regards to the blankets, Maybe you can also reduce the amount of cigarettes she smokes( can you put some away) Does she go to the shop and buy them herself? Is there anyway you can keep her out of your bedroom, I dont know the layout of your house but can you lock your door during the day if you arent using it. Can Angie bring you a mask to wear? If surgical masks are expensive maybe try a dust mask that decorators use. I know its hard with a child that is an adult, my cousins son has schizophrenia, he tends to withdraw into himself though when he is ill and stays in his bed. I hope you ll get better soon
Roxy, I'm not lashing out at you either but Buckeye is right about boundaries for Kelsey, if basic hygiene is such a problem for her then I too am confused about her being very smart. I can see an accident happening but this is way overboard.BTW if she is this uncooperative now, how do you think she's going to act if it becomes clear her meds are not being absorbed like they should? Schizophrenia and Bi-polar are very hard to control in the best of circumstances, but with losing so much fluids her meds can't be as effective. Then you're going to have a whole nother situation to handle and frankly, from the way you talk. you're not going to be able to cope.
I don't know you very well Roxy but have read your post's for months now and I believe what I'm saying to be a true assumptiom. You are very precise and discriptive with your post's. I hope I am wrong about the coping but you seem right on the edge now and none of us want to see you in an explosive situation. I'm not sure why Kelsey is not in an aternative living arrangement as before but maybe you would both be better off if you looked into that again. Especially now with you husband and stepson coming... Take care
I'll admit I don't know much about these kinds of situations but my Aunt's husband had (She has passed on now) a sister that was aultistic. (Surely that's spelled wrong) Her parents use to take her home to stay with them on the weekends and durig the week she lived in a home with several other handicaped young adults and several care givers. It was kindof the best of both worlds for them all. It gave the girl an opprotunity to get hands on care from caring professionals who know all that was involved in her health and also gave her elderly parents a much needed break from the constant care a young woman in this condition required. I'm not sure if your state has a program like this and I know it took a long time for you to gain custody of your daughter to begin with so I know it would be a difficult decision for you.
Aren't you glad you don't have foster children or after school children in your home to be responsible for as well as yourself and your daughter? This was the main reason I suggested in the past that you minimize your responsibilities not increase them.
I hope you and Kelsey both are feeling better this afternoon.
Hi roxy,
In Oregon it is called respite care. You can make arrangements for the person to be cared for from 1 hour to at least a week or more. You just drop them off at the appropriate place. Hopefully you can check with the state and get some ideas. It is like a baby sitting service, so to speak.
The services many of you talk about just are not available here or in California. I got her out of institutions because they were such hellish places. She has been incontinent for years. It started in the mental hospital - side effect of the meds. She is better when she is well.
I called social worker today sounding pretty hysterical. To be honest, I had been up ALL NIGHT. Still did not have clean linen and she will not listen to me as she is so self absorbed from being sick. I called the social worker and asked her to come over and evaluate her. Both her and Angie agreed that she is just being self centered and defiant. The social worker said there is NO respite care they can offer - EVER. I am going to when I am better, look into going to the facilities and see if I can advertise for a caregiver. Angie asked social worker if she can just give me a month break and she said it would demonstrate that my abilities to care for her are unsuccessful. That she would have to go to foster care but her history is all of the foster homes she has been in, she has run and ended up on the streets. If she survived the streets, she would again end up institutionalized.
Brett is coming tomorrow. She minds him better. She gets embarrassed in front of Colton also. She is taking advantage of how weak I am. I feel so sick. We are going to have a talk with her. The social worker talked to her and said she needed to stay in her room. That was the considerate thing to do and her mom could bring her anything she needs. I have been doing that all along anyway but she still gets up and makes messes, spreads germs and generally is making my life miserable. Brett called me today and said he cannot make it til tomorrow. I said GOOD. It was such a relief.
I got Angie to buy her some depends and she is wearing them. I have given up on mask. I have been so exposed to her bodily fluids, I give up. I slept most of the day as she did. I was up all night
Both Angie and social worker said I would spend two hours at the hospital and they would send her home. She has a virus.
Lovie, I wasn't talking about anyone. I was just tired and angry. You were reading my mind. There is no lock on my door but last load of blankets, (can wash only one or two at a time), I folded and put under my bed. She has MY Bedspread right now. It has been washed three times in the last few days because she keeps taking it off my bed when I am sleeping.
Junction City - My county worker said no respite care is available. Does she HAVE to provide me respite care since you mentioned Oregon?
PS I have had Kelsey home for 14 months. I would say I have done a good job taking care of her with all of her challenges. This situation has been exceptionally difficult because I am not getting rest. You all know what it is like to not get rest.
[QUOTE=roxy]You know what really frustrates me. I tell Kelsey that if I get sick it could be life threatening. She always responds - I would be happy if you died, because you would go to heaven
Roxy,
This comment by Kelsey sent up a red flag to me. I worry that Kelsey may be suicidal by her thoughts about heaven. Please do what is best for Kelsey even if it means she is hospitalized and getting 24 hour supervision. You are having such a hard time yourself and I know you like Kelsey being with you, but she may need more care than you are able to give her at this time.
Roxy, have you and Kelsey ever worked with a behavior analyst? I think it could really help out a lot. I've worked with many kids and adults with schizophrenia/schizo-affective disorder/bi-polar/ADD/etc and have seen so much success with the right medications and behavioral work. The company I used to contract with had CBA (certified behavior analysts) go into the home several hours a week and work with the parent/child. If this was unsuccessful, often the child would, for her safety as well as the others in the home, be sent to a residential facility to learn behavioral techniques. I'm concerned that Kelsey obvsiously has no regard for your health or safety and that her living with you in her current state is jeapordizing your health. You mentioned that Kelsey is smart. I've worked with kids whose IQ's were in the moderate mentally retarded range with similar diagnoses who were able to abide by the rules in the home and went on to live their adult lives at home with their caregivers in harmony. Behavioral training works wonders. The parent/caregiver definately needs to be involved though, as they are the ones who implement the program. Great advice Julia! This board has some knowledgeable members and superb advice. Hope you are reading this Roxy as we only want what is best for you and Kelsey.Kelsey has been severely mentally ill since she was sixteen. This is how it is. I have looked into every service available to her. I sued the county we came from to get more services and won. But that was before she was 18, after 18 I conserved her but they refused to hospitalize her unless I gave her up as a ward of the state. Then they hardly let us see each other. Every foster home or other facility that was not lock down she escaped from and ended up on the streets. One time she was on the streets with a broken ankle that she walked on for three days. It was fractured!!!! She had jumped from the roof at the facility she was in. Every lockdown facility she has been in, she stays in her room and does not comply with any rules. She never goes to groups. She loses visiting priveleges. She gets in fights and she has been raped. She also has unprotected sex regularly. It was more of a nightmare for me to see her in those places, for five years, two years we tried foster/group homes. When she is on the streets I cannot sleep. I have nightmares about what might be happening to her. Juliah, I have begged for any services I can get. NAMI has always been a big whining party, at least the county I came from. I may look into that here. I am getting all the services available for her. That is what I keep talking about. Mental health is underfunded and the west coast is the worse.
You are right about the cigarettes. I do use them to bribe her. She does not get her morning cig until she puts dishes away. I will start using them again but right now she has not been smoking very much. Too sick. I don't want her to do laundry, she is sick - I just want her to not use every piece of furniture in the house and only use two blankets. Having said all that.
Calling the social worker did wonders. I told her I called social worker to ask her to take her. I told her social worker told me she would talk to her and asked me to give her one more chance. That is pretty much the truth. She is resentful but is now wearing her diapers and staying in her room. What a relief.
I am sorry that I have dumped all of this on you but it has been the most trying time I have had with Kelsey. She usually listens to me better than anyone. I do use bribes. I would love respite care as she does not focus and can be a hazard. She has a lot of auditory and visual hallucinations. She is very medicated and her psychiatrist said she is the sickest he has ever seen but she is on the most meds she can take. She is my only child. I love her with all my heart. She stresses me out beyond belief but she also gives me so much joy when she is happy and I know I saved her from those hell holes.
She is too religious to commit suicide. She is careless on the streets as she thinks she has a guardian angel and besides, she does look forward to heaven.
Things are better today. Way better. Thank you all and thank God. She is still in bed, but is wearing her diaper and when I told her she had to stay in her room, she obeyed.
It is not so easy to hospitalize her. Social worker said she sure cannot be hospitalized for the flu. If I could not take care of her, she would be institutionalized and she said I probably would not be able to get her back. She said the county has had its doubts whether I can take care of her in my condition. I am determined to try since I know the alternatives. I would love a respite from Kelsey and I am going to look for someone to pay to give me a break. The thing is, right now, I have had the burden of all the bills since separation and I cannot afford it. This is the first time that I did not feel I could handle Kelsey.
It is easy to say "she needs to abide by rules" but the alternative is I lose her to an institution. She just does not understand consequences. The system never changed her behavior one bit, it only got worse.
I think those are excellent suggetions Juliah. She needs to be able to abide by certain rules in your home just as anyone should have to. Obviously she has special needs; but she is also very high functioning from all you've told us. She should be expected to follow certain rule of society in general. The depends is a good start. I'm glad you had Angie bring those. She needs to learn to be responsible for her own hygiene. It's understandable that she can't control it; but she needs to understand that it's unhealthy for those around her to be exposed to her bodily fluids and frankly it's just GROSS! How often does she take a bath. I can't imagine how that must smell. She needs to learn to be embarrashed by that around more than just Colton. She should be taught that this is embarrashing around everyone.
The smoking is also something you might want to ration. You say "Chain smoke" but that's several packs a day. I smoke close to a pack a day (And that's far from chain smoking) and that's more than enough for anyone.....especially a young girl with a mental handicap. A lot her only so many a day. How are you getting them for her anyway? You don't drive; so how does she get them? Are you getting them when you get your groceries? Put them away and only give her so many. Have a lock installed on at least one closet in the house where you can lock things away that she souldn't access. This is for everyones safty. As much as you sleep it's dangerous for her to be wondering around the house unsupervised for hours at the time. I'd lock up your medications if I was you.
I don't mean to tell you how to care for your daughter Roxy. I'm only making suggestions I hope might help. Seems you are at your wits end and might appreciate the brain storming. Hope that's the case.
I was typing my response at the same time you were Roxy.
I don't blame you for not wanting to put her back in a place like before or any where else that her life would be in danger. I just hope you can figure out a way for you to care for her and the two of you to ba able to live together that will be easier on you. I can only imagine how hard this all is for you.
If it was me; I too would do everything in my power to care for her at home as well.
Hope you are feeling better today.
Roxy, I agree with you wholeheartedly that mental health programs are underfunded. It makes me so angry, particularly when I see the effects (and hear about them in your case). If you lived in my area, I could refer you to a number of places that could help. However, the only reason I know about the available services is because I've worked in this field for 15 years and that's my livelihood. I think that contacting NAMI or any organization in your area that deals with mental illnesses might help in that you might meet others who know of services that are hard to find, etc. The majority of services I have found out about have come from the clients themselves! I just recently found out about an adult day program here for autistic adults that I never knew existed. A client told me about it! So, when you are feeling up to it, maybe it will help to connect with others. Behavioral analysis is, for all intents and purposes, similar to bribing. Behavioral training works on even young children (2 years old). If you can find something meaninful to Kelsey (cigarettes, etc), you can put a contingency on them. Use them as a reward for a specific behavior (she won't likely understand something as...."please respect my stuff"). You'll have to be very specific with her....as in "Kelsey, you may only touch YOUR blanket and sheets. If I find you touching any others in the house, you will lose your noon-time cigarette". Since you're in control of the re-inforcer (cigarette), she'll eventually get that she needs to abide by your rules or no smokie. The key is consistency. This is hard for people, like us, with RA and other health issues. We feel so crappy that, in order to preserve our health and sanity, we give in. I know Roxy, I've been there. I know you are doing the best you can Roxy and I applaud you for your efforts to keep Kelsey at home. I have no idea how hard daily life must be in your household. Lately, it sounds like pure hell to me. The Depends issue should be non-negotiable. No one should have to live with urine trails throughout their house. Kelsey sounds like she is able to control her behavior enough when Brett and Colton come around. From what you've written about Kelsey, it sounds like her quality of life is so much better than what is what in the institutions. However, being the optimist that I am.....I believe her quality of life can be even better. Yours too. I hope you are feeling better today Roxy. I hope this post comes across in the tone I'm intending it to. I wish the best for you and your daughter.
Juliah and Lovie, I know both of you. I know you only say things with the best of intentions. I use the cigarettes a lot for bribes, the problem with that is - I sleep. When I am sleeping, I don't want to be waken up because she is having a nicotine fit. She smokes 1.5 packs a day. She smokes more if she can get her hands on them. I ration them but when I am napping, I give her several. She buys her own cigarettes. The store is down the hill and it is good for her as she has to walk up a very steep hill to come home. At least it is a little oxygen in those poor lungs of hers.
Things are quieting down here. I am exhausted. My doctor called and said why have you not gotten your blood test? I explained and promised tomorrow. Kelsey is sleeping so I am going to try to get a nap in.
Juliah - Kelsey would do nothing for me if I did not bribe her lol. I pay her for chores and I use the cigs. It is just that she has been soooooo sick, she looks horrible, she just hasn't cared about the bribes. She has never been this gross around the house. This is a horrible flu she has. Angie says she has never been so sick. My big gripe was how she would not contain her germs. Using all the linen, touching things when you know how gross her hands are, would not wash her hands, etc. etc. She has been so sick, no consequences could have persuaded her short of calling social services. She is mad but she is staying in her room. She does not want to go back to an institution. Her room reeks, the rest of my house has the sweet smell of Pine Sol
Definately look into having Brett install a lock on one of your larger closet doors. That way you can lock up certain things that you don't want Kelsey to get to including things like extra blankets.
I'd suggest maybe the two of you could also get on matching nap schedules even when she's well. That way from say 1:00 to 3:00 you can lay down and nap and she can watch movies or soaps in her room quitely until you get up. It sounds to me like she might not should be left alone to wonder out.
I know with my children (ages rangeing from 9-17) consistancy like Juliah mentioned is KEY! Rarely do my kids do much without being reminded it needs to be done. Don't feel bad about that. Kelsey obviously can't always be expected to be thoughtful. As with any teenager; They have to be reminded and followed up behind.
Hang in there.
I would guess you are right on about her maturity age. We are putting a lock on the door. Kelsey does not watch tv but entertains herself in her room. We were on the same nap schedule before she got sick. She is treating me very well today but is still very sick. I really have been saying I am not going to get sick but darn, I sure feel achey, weak and feverish. I will have to keep up that mantra ! Consistency was so much easier before I got ill