Sister had strokes, her kids caregive 24/7


Recommended Posts

Hello,

 

My sister had a stroke in 2010 and had at least one more in 2012 (perhaps one more before that). She has two kids who are in their 30s and they do nothing but tend to her and her demands 24/7. Before I tell you how little I know about their situation, I should preface this by telling that we were raised as Christian Scientists and as such, are very secretive about diseases and physical ailments. I am no longer a Scientist and neither are the kids but the son, who is the older one, is the shot caller and the disseminator of information; hence, I hardly ever get any.

 

She has gone to the ER and urgent care and is now stable but is a very difficult patient and practically abusive to the kids.

  • The kids are alone and doing the best they can but I am sure, are not feeding her a balanced diet. The kids say that she refuses to eat a lot of what they put in front of her. I have seen that but I also know that they sometimes have such little time that they sometimes will get some fast food. I had bought them a juicer and used to bring them organic greens but juicing proved to be too much work for them to keep up.
  • She is on some blood thinning meds for High BP.
  • She is strong but does not make any effort to stand up.
  • They have a cushion that is situated at the back of the wheelchair which prevents her from being able to rest her back against the back of the chair. As a result, her knees hang off the front of the chair and her thighs are never "horizontal" they are always sloped forward as thought she is about to slide out of the chair. When I ask why they have that cushion there, they give me some reason, which makes no sense to me but who am I to question? They are living it, I'm only a visitor.

For a short time they did have a PT come out to help but her attitude was so bad that the doctor stopped the physical therapy.

 

She is now complaining of pain in her bottom. She only goes from the bed to the chair and back. In between that, they take her to the bathroom. I suggested that her daughter try giving her some light massage

 

When I ask friends who might be able to suggest what might be done or how I can help her, they ask me what kind of insurance she has. Everytime, I ask the son, he gives me some roundabout non-answer. I believe it is probably a hassle to fill out or find the right forms to fill out.

 

We live in Los Angeles. What I seek are instructions that can help me navigate what I need to look up or ask to be able to help them cope with what is going on and hopefully, get them some help. Their lives are no longer their own but I don't know how to help them.

 

Is there some kind of agency or even a site with a flowchart that can help me to ask them the right questions so that I can find out what aid (if any) hey are and are not eligible for? I believe they are being provided for by the late husband's pension, he worked for the government.

 

Any advice on where to start to be able to help them would be appreciated. If at all possible, I would prefer dietary, nutritional supplementation, naturopathic or homeopathic recommendations over medications/drugs.

 

After all that, I may still not have given you enough information to give me any advice so if there is specific information that I need to post, please list it out for me and I will find it out and post it.

 

Thanks,

Jorge

Link to comment
Share on other sites

http://www.strokecaregiver.org/handbook.htm is the handbook that has been compiled by caregivers from this site. You may find some very helpful information here.

 

Next, since you do not have a healthcare power of attorney for your sister, your involvement can only be directed by her children who have that power of attorney I expect. This is a bitter pill to swallow when you see your sister in a situation that may be harmful to her. Frankly, your options could result in a really difficult family situation. If you feel she is being neglected you can always go to the courts and report that she is being neglected. The other thing you can do is sit your sister's adult children down and confront them with your concerns. You can, with compassion, explain that you know they are in a difficult place. You know their mother is difficult. You know they are probably exhausted. And then you can ask them to allow you to help. This may be the answer rather than you creating a flow chart for how they can do things. If you have the time, I would suggest you may need to take over her care.

 

Just a thought about the blood thinner. High blood pressure medication and blood thinners aren't the same. If she is on a blood thinner that must be monitored regularly. Is this happening?

 

There are so many unknowns really, Jorg. I'm sorry for this. You are going with a lot of assumptions - based on limited knowledge you have of the family situation I know.

 

Any advice on where to start to be able to help them would be appreciated. If at all possible, I would prefer dietary, nutritional supplementation, naturopathic or homeopathic recommendations over medications/drugs.

 

Is she a diabetic? That condition requires specific dietary considerations. We can provide you with web-sites you may wish to explore if she is. If she takes a blood thinner she needs to be on a diet low in Vitamin K to keep her blood thinned at a proper level. Frankly, with stroke homeopathic medicine may not be a suitable solution. I don't know that, but I am not aware of anyone who has controlled the complicated medical conditions that exist with stroke.

 

I'm a little concerned about her complaint of pain from sitting because that may be a result of bed sores from sitting. Also, I am rather concerned about the seeming lack of concern about her comfort in the wheelchair. Is she safe?

 

Jorg, these may be more questions than answers too your post. I'm sorry I can't lay out a plan of action for you. I am more concerned about her care and safety right now. If she is being neglected, even if it is because of religious beliefs or caregiver fatigue ... THAT needs to come to an end. Her attitude may be a result of her strokes. And yet it seems she is just being viewed as a difficult, angry patient. There are all sorts of emotional problems that crop up after strokes. You or they may not want to hear it, but in many (if not most) cases and anti-depressant is often necessary.

Link to comment
Share on other sites

Hello. The only information that I thought of when reading your post ...at the hospital where she was at..you can call social service and they can maybe send you pamphlets to read and help you, they can have a dietician mail you packets/information about foods, physical ther and occupational ther can also send you info. Or even call those departments to set appt up to go there. I worked in a hospital for 30 yr before I had my stroke and they will help, I also found books at stores ect to help me too. Best of luck!

Link to comment
Share on other sites

Hello,

I should preface this by telling that we were raised as Christian Scientists and as such, are very secretive about diseases and physical ailments. I am no longer a Scientist and neither are the kids but the son, who is the older one, is the shot caller and the disseminator of information; hence, I hardly ever get any.

 

my late grandmother was a devout Christian Scientist so i understand the bother. She to had a stroke and we just had to sit there and do nothing. She NEVER sought medical advise and disowned her own daughter( my mother) because she became a nurse.

 

I question is your sister till one because you can call a 'practitioner' to come out and well you know or to contact social services and maybe they can suggest a comapny that will help her. Maybe pray with her. I know that made my grandmother calm.

Link to comment
Share on other sites

http://www.strokecaregiver.org/handbook.htm is the handbook that has been compiled by caregivers from this site. You may find some very helpful information here.

 

Next, since you do not have a healthcare power of attorney for your sister, your involvement can only be directed by her children who have that power of attorney I expect. This is a bitter pill to swallow when you see your sister in a situation that may be harmful to her. Frankly, your options could result in a really difficult family situation. If you feel she is being neglected you can always go to the courts and report that she is being neglected. The other thing you can do is sit your sister's adult children down and confront them with your concerns. You can, with compassion, explain that you know they are in a difficult place. You know their mother is difficult. You know they are probably exhausted. And then you can ask them to allow you to help. This may be the answer rather than you creating a flow chart for how they can do things. If you have the time, I would suggest you may need to take over her care.

 

Just a thought about the blood thinner. High blood pressure medication and blood thinners aren't the same. If she is on a blood thinner that must be monitored regularly. Is this happening?

 

There are so many unknowns really, Jorg. I'm sorry for this. You are going with a lot of assumptions - based on limited knowledge you have of the family situation I know.

 

Any advice on where to start to be able to help them would be appreciated. If at all possible, I would prefer dietary, nutritional supplementation, naturopathic or homeopathic recommendations over medications/drugs.

 

Is she a diabetic? That condition requires specific dietary considerations. We can provide you with web-sites you may wish to explore if she is. If she takes a blood thinner she needs to be on a diet low in Vitamin K to keep her blood thinned at a proper level. Frankly, with stroke homeopathic medicine may not be a suitable solution. I don't know that, but I am not aware of anyone who has controlled the complicated medical conditions that exist with stroke.

 

I'm a little concerned about her complaint of pain from sitting because that may be a result of bed sores from sitting. Also, I am rather concerned about the seeming lack of concern about her comfort in the wheelchair. Is she safe?

 

Jorg, these may be more questions than answers too your post. I'm sorry I can't lay out a plan of action for you. I am more concerned about her care and safety right now. If she is being neglected, even if it is because of religious beliefs or caregiver fatigue ... THAT needs to come to an end. Her attitude may be a result of her strokes. And yet it seems she is just being viewed as a difficult, angry patient. There are all sorts of emotional problems that crop up after strokes. You or they may not want to hear it, but in many (if not most) cases and anti-depressant is often necessary.

Hi Ann,

 

I do think there might be some amount of neglect but I also don't think they (nor I) know what it is they are doing wrong. I can confront them but I really don't know what to confront them with. I first need to know what it is she needs in order to be able to make suggestions.

 

Thanks for the caregiver's handbook, I will read it and also send it to her daughter and see how we can proceed. I will also tell her to keep an eye on the Vitamin K in the diet.

 

As for her safety, that is relative. They would not do or not do something knowlingly bad for her but they definitely exhausted and may simply not do something out of either convenience or after hearing it 200x/day.

 

Her attitudinal changes are definitely as a result of the stroke. I do not know if they have looked into anti-depressants.

 

Sincerely,

Jorge

Link to comment
Share on other sites

Well she is still your sister and I hope one day she will listen to things you have to say that may help her cope with having a stroke and kids helping or not it is tough having and living with a stroke in my opinion that has been 12 years now... Welcome aboard!!!

Link to comment
Share on other sites

Jorg -

 

I know there are lots of questions. And I certainly would never suggest they are abusing her purposely. It does get tedious when one hears 24/7 complaints...everybody is human. And abuse takes so many forms - not always doing to, but sometimes not doing! We don't know, we aren't there, as you indicated!

 

I would suggest you just have a quiet conversation, not really confronting them, but more asking questions - are they ok with this or that? And one important item is to let them know you are on their side!!! It is really delicate, isn't it?

 

Best of luck!!

Link to comment
Share on other sites

Jorg -

 

I know there are lots of questions. And I certainly would never suggest they are abusing her purposely. It does get tedious when one hears 24/7 complaints...everybody is human. And abuse takes so many forms - not always doing to, but sometimes not doing! We don't know, we aren't there, as you indicated!

 

I would suggest you just have a quiet conversation, not really confronting them, but more asking questions - are they ok with this or that? And one important item is to let them know you are on their side!!! It is really delicate, isn't it?

 

Best of luck!!

Hi Ann,

 

I looked through the manual and did a search for "diet" and food and found nothing that could get me started on helping to evaluate or suggest what they could feed her. I am looking for just a basic plan that they can follow. Without a plan to follow, they are as blind as I am. I am willing to help purchase some of the food with or for them but I can barely figure out what to eat myself. Are there NO guidelines on what kind of nutrients stroke patients are usually deficient in or which ones need to be monitored and how? Even vitamin do's and don'ts like you mentioned with the Vitamin K.

 

"Healthy" people have a hard enough time coming up with a diet but stroke victims must have many of the same conditions and thus must have some common dietary needs, no?

 

Thanks,

Jorge

Link to comment
Share on other sites

  • 2 months later...

Hello Jorge,

 

I still don't know whether she is diabetic. If she is, then her carbohydrates should be watched closely. I don't know whether she is even checking her sugar levels or not. I don't know of any nutrients that are lacking that cause strokes. Diabetes can be a contributing factor.

 

And so, as far as dietary guidelines for helping a person recover from strokes, I've not heard of any such thing. I was an eight year caregiver and the only dietary considerations we made were for diabetis/bp (low sodium) and for coumadin (limiting foods with vitamin K). Really, if you and the kids know what you should eat for a good balanced diet, she should be eating that sort of diet! Fast food is probably the worst food out there for anybody, but that isn't news!!

 

I think the family definitely needs help from a social worker who can provide direction as far as putting strategies in place to help your sister. As was suggested, if she was in the hospital a social worker should be made available to help. Everybody is busy. Yes, her children are busy. That does not mean she should not be getting the care she needs however.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.