Before I post about my situation, I'd like to know if anyone is caring for an adult child with a chronic illness who is now homebound. If not, is there another forum I should post on?
I'm not but there was a poster here (and I think on the quilting forum) who is....Minnie_tx or something like that.
Yes we have a couple that come here. They don't post often. If you have a question, go ahead and post it. They may see it and respond. It may also be something that someone else could help you with.
I am pretty sure that there is not another forum that would be as suitable for you.
Hi, I am a caregiver for our oldest daughter, she in now 31 years old. I have been taking care of her, her whole life. Don't know much help I can be but I will chat with you and I/we have experienced a lot.
Hi, Candj. My youngest 23-year-old daughter is a diabetic who has neuropathy of the stomach (gastroperisis). She is now in the hospital with pneumonia and a yeast infection. The doctors had put her on eating thru an IV at home which until this week when pneumonia set in, she was able to handle on her own. She had moved back home last summer and, fortunately, I'm not working now because she's been in the hospital more than she's been home.
I'm just hoping that she'll get better soon because I don't know how much more her body can take. I'm just mentally (and physically) tired.
Tell me about your daughter.
Hi marie26, our daughter was born with cerebal palsey, and several other problems. She has to have 24 hour care, which is pretty much most of my time. I am her caregiver and legal gaurdian. She can walk a small amount, or I should say get about, she always has to hang on to something and can communicate somewhat with a few hand signs and some pointing and sounds and a headshake yes or no. We do okay. It is quite a full time job. We just discovered this large board with all the wonderful forums on it while looking for information about appliances, we are in the midst of a whole house remodel and then we saw the caregiver forum. This whole board is pretty neat. Not only do I take care of my daughter, but I have to fight with doctors, Social Security, government agencies and so forth.
Anyway, I do enjoy reading all the forums.
My problems seem small compared to yours. But I can certainly relate to fighting with doctors... and worrying about losing health care and collection agency calls wanting thousands of dollars that the lousy insurance she has won't pay. This is our biggest fear right now, her losing her healthcare.
Well marie26, taking care of our daughter now is not really a big problem. I am pretty well adjusted to everything. I think it is wonderful that you are able to assist your daughter and be there for her at this time, it is so important to her. It is also important that you an I take care of ourselves, and keep our health and spirits up and charge through the day. It is nice to talk to people and share thoughts and ideas. This forum can be so helpful because we as caregivers are really "selfgivers". We give and give and sometimes we do not check to see if the tank is getting empty.
The problem you have of her healthcare coverage seems big to me. Things like that looming in the future tend to wear us out faster than daily duties, and hon, that is why we need each other and this forum serves such a great purpose. I don't know where you live, but there may be other finicial help that you can get. Assistance like this seems to be kept a secret and you have to find it on your own. We had to stumble onto most of it in our situation and evey situation is different. My daughter is 31 years old and most of that is ironed out now, just minor bumps in the road.
Hon, I just want you to take care of yourself. It is a thin line we walk as caregivers and a very demanding job, no matter who it is we are taking care of don't ever feel that you are alone in this struggle.
I haven't been to the forums for a while and just ran across your post tonight. I have a 17 year old son who has been on life support, at home, since birth. being a caregiver for anyone is a hard row to hoe but taking care of a disabled child is by far the hardest row yet. It is well worth the battle tho. If there is anything I can help you with just contact me.
Hi, I hadn't visited this particular forum in awhile. I care for my 27yrs old daughter (MR/DD since birth). Luckily, she is ambulatory and in general good health, works at a mr/dd workshop and participates in "field trips" the local mr/dd org provides. I also care for my DH who is perm total disabled (W/C-did not qualify for SSDI) with epilepsy and heart problems. In addition i have been diagnosed w/COPD (my dr gives me 5 years-isn't that grand of her?! just kidding). I am the person in the family that is the go-fer, driving, financial and just about anything else I do.
So feel free to ask questions & vent.
I have not been to the board in a long time, but I will try to come more often.
I am the caregiver for our 42 yr. old son, who was disabled in a swimming accident that left him what is known as "an incomplete quadrapalegic" that means he can move some parts of his body (his arms and above his shoulders) and has feeling over 75% of his body.
We were lucky in that he became qualified for Medicare after being declared Permanently Disabled, and his dad had an insurance through Govt. Work and being retired USNavy.
It is hard to care for a disabled person, related or not, and it does make your life a bit more difficult.
If you have any questions, I will be checking in from now on.
Better late than never...LOL
I JUST came across this forum...Halleluiah!!
Have been feeling so alone & in unique situation...tho I know have understanding buddies our there in cyper-space somewhere. Anyhow...situation as follows...our 41 yr old daughter w/cerebral palsy & dystonia living with us. While the parental joy is love is present...physically strenuous and impacting "our golden years of retirement". Just knowing I can come & vent would be so very helpful when my emotions get me down. Any email communication welcome! Thanks!!
I haven't checked in here for awhile. My DD is now in a nursing home. She had been in the hospital practically every week for 4 months due to very low and very high blood sugars as well as the pain from her gastrperisis. The doctors there finally said that they can't do anything for her and she should go to a nursing home. She just turned 24 and everyone else there is quite a bit older. It took them over 2 weeks to even have a discussion with us as to what her care should be. She was put on an insulin pump this week which has caused her sugars to drop quickly which has caused her to have seizures, numbness and shaking on her right side which doesn't go away. This hadn't happened to her since she was a child.
The doctors only have to come to the nursing home once a month and his answer to this is that she is mentally causing the seizures (untrue from past experiences) and he is stopping the pain meds for when she has bad pain and putting on a low dose of methadone. He said if she goes to the hospital, she won't be allowed back in the nursing home. The sad part is that this doctor seemed different than the others in that we believed him when he told us the plan of helping her was to take small steps and not cut off anything cold turkey. He didn't do this.
So now I am going 4-5 days a week to the nursing home which is 1 hour away. DH is feeling extremely neglected and I'm the only one who is there to visit her and fight for her. We have no one else in this rural area, having lived here a short time. There isn't a religious place I can turn to here for support.
DD has 2 chronic illnesses. They know about diabetes but have little experience with gastroperisis. The only literature seems to be that narcotics slows the bowels and so the doctors believe it's better for her to be in pain. Her bowels are never slow with the narcotics, though.
She has been denied home health coming to the house (she left the local hospital [non-compliant] to go to the one 1 hour away because of terrible care that was bordering on dangerous).
And the nursing home is telling her that they are not there to check her blood sugars every 2 hours. Since our state has no laws on nurse to patient ratio, there is a ratio of about 22 patients for 1 nurse. And this one nurse is the only one allowed to check blood sugars and give medications for all the patients. Considering it costs $5,000 a month to be there, the patient doesn't seem to be the priority. There are nurses under the main nurse but they can't do any of these things, just give a message to the nurse.
It's just so frustrating. The nursing home is her last hope and she is in so much pain and no one seems to care.
Thank you for letting me vent.
hi, I just found this forum, did not know it existed. I have a 35 year old severely retarded daughter. She's on about a 1 year old level. She cannot speak, walk, etc. She does a little crawling but is getting too heavy (at 64 lbs) to really do that much, it puts a lot of wear on her knees. She has a habit of hitting herself a lot which is the hard part. She doesn't play with toys or watch tv anymore like she used to. It is hard to make her happy these days. She still loves to ride in the car though. but does not like to go shopping. I am lucky in that she does not need constant attention, I just have to be here with her. I can sew, garden or do other hobbies, and I have learned over the years to do things in short bursts.
Birdtalker, I really feel for what you need to go through on a daily basis. I admire your strength. Do you have others who can help you?
I am a 27 year old sibling providing sole support and care for my 17 year old deveolopmentally disabled sister. She can walk and talk and has the mindset of a 4-8 year old on different things. I have been careing for my sister for over a year now and it is hard mentally as well as physically careing for someone who can't properly care for themselfs. On top of careing for my sister I also have two young kids age 4 and 7. It is very stressfull to care for a disabled child comepared to one who has no disabilities. I find my kids are less stressfull together compared to my sister because where I can ask them to do something they will do it and if I ask my sister chances are good I will have to follow up and remind again for her to do it. How do others cope with the fact your child is always going to be like this? growing up in the same house I never cared how she was ..my sister just was . Since I have had to take full responcibility I get frusterated with myself for expecting more from my sister even though at the same time I know she mentally can't. I love her and all, I just have a hard time comming to grips over she never will be anything more then what she is now and what she can do now ect.
I also haven't been here for quite awhile. I have a son that is 45 years old. He is a t-4 para with a brain injury. He had an accident when he was 17 years old. If I can help, please let me know.
I am a single mom taking care of my 32 yr old daughter with Down's Syndrome. She has had a variety of problems, currently I am looking for solutions to her pms which is aggravated by her thyroid medication. The Dr. just gave her a script for prozac, I am not willing to give it to her. I am giving her evening primrose and increased B6, eliminated diet sodas and am increasing her water intake.
Anyway, Marie, in doing this research for my daughter I found information regarding water and the diseases...it may help your daughter. The name of the book is "Your body's many cries for water" by Dr. Batmanghelidj. He has written several books and talks about gastrointestinal problems and diabetes, and how water, plain old tap water, works in the body.
I am on his third book, have been using the water therapy on myself and my daughter, and seeing gradual improvements. He has a website, watercure.com But I have bought the books at used book stores and Borders.
I hope you can try it, and get some relief for your daughter, and relief from the medical professionals that, IMHO, are just about drugs and money, not quality of life.
God Bless you all!
Hi everyone, I have not checked in for quite a while, we have been remodeling our home, but saw yesterday that there are quite a few of us. We still have our daughter here with us, she is now 32 years old. The problems we have is trying to get her to do something that she does not want to do. I would like to get her to drink more water, however, I have to try to find some way to disguise it and make it taste like a soda or something like that.
Anyway just checking in and say howdy.
Well, I just discovered this forum. I have a 26 yr. old son who has autism & MR. I feel like I am going under some days. He is mad that his day program is closed tomorrow. He has to have his schedule and routine or he gets upset. His day program is 35 mi. away and whenever the weather is the slightest bit bad (a few snowflakes in the air, snow storm predicted, etc) they close. That has happened 3 times in Dec. And winter isn't over.
I could use encouragement.
Hi everyone! I am so glad I found this post! I admire all of you guys and how strong all of you are. I always worry about the future because I have twins that are almost 7 and my son had a hemispherectomy at 11 weeks old. Since then he has had 13 more surgeries. He talks very little and scoots on his butt. Life just feels so challenging on some days that I can't imagine the future and how hard it is going to be some days. But reading all of your post I know that I love my son to death and he makes me so strong. Thank you guys!
Here is a link that might be useful: Kodys website
Yes, because my daughter is 28 and has multiple developmental birth defects, I recently went back to college to get a degree in Human Services so I can level the playing field. After 28 years of doing what I do, I consider myself an expert on programs and entitlements at least in a couple states where we've lived. I have been through it all including widowhood and 2 marriages while raising my daughter. My goal is to keep her OUT of institutional living. I have fought all the way to the governor and won. There is no fortitude like a mothers! My daughter has her own home ( I designed it wheelchair accessible) and she qualified for every program under the sun. She has limited income, in-home caregivers and lots of technology to make this work. If there is any one out there who would like some advise I may be able to help. The whole thing is "equal not more" I have been working in this field for 28 years and I give away my input support and encouragement because I can. There are many of us out there raising adult disabled children.
franceymargaret i would love to chat with you.
i'm in a different place as a home provider and am seeking two more women with whom to share my home.
not being an expert in the field leaves me with many questions and i am thinking of more education as well.
((((((hugs)))) for all of the moms and dads and family members of those who need help.
Hi. I have 2 adult children who have been medically fragile for the first 17 years of life. Stable now due to organ transplant. Life has been full of challenges, pain, sorrow, and more sleepless than restful nights. I have HOPE everyday.Hope that it will get easier. Hope my husband suddenly likes me again. Hope that someone will be there to take care of them when I am gone.
I have a 38 year old daughter with Friedrich's Ataxia. She is in a wheelchair full time and requires 24 hour care.Her mind is fine but her body does not work.My husband and I are seniors. We are looking at placing her in a care facility as I am worn out caring for her and her father is battling some health issues. She does not want to go and has attempted suicide twice.I feel so guilty for wanting to place her. I just want her to be somewhere safe if something happens to us and not just put any place at the last minute. It is the hardest decision we have had to make. I just pray every day that she will come to accept a new living arrangement.
CViolet...........My neighbor is in the same situation, but her daughter is only mentally challenged. As my neighbor started aging it was more difficult to handle the problems with a "teen" who is 50 years old. She found a day care that took the daughter a couple of days a week. The daughter loved it and doesn't want to go home in the evenings. I think this would be a good way to prepare a handicapped person for a change. You might look for a place like that and maybe they know of permanent places.
This post was edited by EmmaR on Thu, Jun 13, 13 at 9:58
Emma, thanks for the response.My daughter goes to a relief care bed once a year for a week to give me a break but she hates it.No one cares for her like Mom. She can really lay on the guilt trip .I try to not let her get to me but sometimes it is easier to give in than fight with her about it.
I know of 2 other situations like yours. It was hard for the mother of one, but she knew it was better than waiting until they died. The daughter adjusted and liked the place. Another woman I met had a handicapped son who the father took care of. He died and it left the mom to take care of her son. Again it was a mental problem and she could not take care of a grown man, she was strong enough to control him. Her husband should have made arrangements in case of his death, but he did not have the back bone to do it.
You need to find her a permanent place then go on a nice vacation if you can afford it. I needed to put my husband in a care home and I would not even after 2 doctors told me I would die if I did not get rid of the stress. Then a friend said, "your life is just as important as his". That hit home and I did what I had to do. I don't even remember where I went but did take a trip and came home rested and at peace.