Need some help/advice, catheters etc.

[Roni]

Hello not sure if I have ever posted here before but, all of your postings have been helpful. I am at about 3 years with this. Seems like I just cannot get caught up with the progession last few months (the planning ahead) equipment wise, etc. Try to keep this short but no one else seems to get this.

My legs don't work, I still try to transfer to toliet my chair, and recliner with my AFO's on, just to weak for this plus it takes 2 to 3 people. And where this hurts in my twin 14 girls (and my 9 year old son helps) are my main caregivers. The husband is working.
This is ripping into the 5 of us really bad. There's days I think things would be better off.
So back to my question, I am finally able to get more respite help. Plus, I was told about hospice in the home there being more benefits (hospice scares me).

I guess a big question is, one of the nurses suggested a catheter at night cause I'm up 3 to 4 times a night. My girls take turns staying with me at night. I just can't keep doing this. Does this sound like an ok thing to do (worry about it being everyday, infections, etc.) Thanks for listening and any suggestions would greatly be appreicated!

Roni

 

[ZenArcher]

The best I can do is recommend what I have seen some other women speak of.

http://www.biorelief.com/store/Female-Urinary-Pouch.html

 

[anneinma]

Do not be afraid of Hospice. My husband got hospice care long before anyone thought he needed it. They will help with all of your needs, equipment, meds, and your familiy's needs. My husband passed very suddenly. No one knows when the time comes. Hospice canl help relieve a lot of stress from you and your family.

 

[j5rj5r]

Roni
My wife and I had the same feelings about hospice. It's not what we thought. I recommend getting hospice ASAP. Just having a nurse to talk to 24/7 in a big help. A catheter is not pleasant but is much much better than all the transfers. You would probably have to use it full time, not just at night. Taking them in and out gives a greater chance for infection according to our hospice nurse.

James

 

[CindyM]

Hi Roni- I have another thought. Maybe somebody conected with your children's school can help get some help for you, on the theory that this is way too much "responsibility" for the children. (I am not saying they should not help, mind you. I am just thinking that if you approached it from this light, a school councilor might find ways to get you services.) Just a shot in the dark, here.

 

[Roni]

Thank you

Want to thank you for suggestions, I am going to check with the hospice. I think going the catheter is going to the right thing ( I did have one of my doctors at clinic they won't do it- but going to check with my primary and MDA doctor). Not only being easier on me but, I always put the kids first they have to have some kind of life. So long as they don't think they still don't have to help.

Thanks, again
Roni

 

[karin]

Hi Roni--I also posted this on living-with-ALS group:

I started having urinary urgency --- which is really bad, when you're using a walker and don't hav enough hand controll to get pants down in time

My ALS Clinic also didn't want me to get one and insisted I see a urologist--probably thinking he'd talk me out of it
Saw urologist, who said:"No problem. Do you want one right now?"

I've had my indwelling foley now for 6 years. I've had 1 UTI...after diarrhea accident that contaminated the foley.
It gets changed every 3-4 weeks. If it's in properly, you SHOULD NOT FEEL IT. You'll feel it if it gets pulled on, which is bad.

Some points to consider:

1.you need to drink lots of fluids (2-3 liters) per day--water, unsweetened tea, NOT SODA.
If you don't like drinking enough, it will clog and get UTI

2. you may need bladder meds to stop your bladder from having spasms..they definitely hurt with foley in

3. what urinary bag are you going to use and can you empty it yourself? I hate legbaga and use a belly bag
research this,get samples. I can help with ideas

4.If you have BM accidents/diarrhea you very likely will get UTI

5.Some people are more prone to clogs/UTI...you won't know 'till you try

6.If you don't like it, you can take it out yourself...deflate balloon, pull out.

I personally would never give it up. Once in a while it clogs and I
need a diaper for the day..yuck.Smelly, leaking, no way.

I live on my own, go with girlfriends for unlimited coffee and never have to worry about bathrooms.

Hope this helps,
Karin

 

[Roni]

Thanks, Karin

Thank you, Karin! I am going to get one, have to wait till next week. Can I ask do you have a nurse come in and change that or do you have to go in to the doctor's?

Thanks,
Roni

 

[karin]

Hi Roni,
my nurse comes every 3-4 weeks.
When you say next week...will that be at DR / urologist office or at home?
Do they supply everything or do you have to get your own supplies?

 

[CindyM]

Karin- I am glad to learn of this option. Thanks for sharing!

 

[mybrother]

I think I would try a commode next to the bed before I would have a catheter. If you have help that would be easier and less chance of infection. You could also have a bed pan I no that sounds awful but catheters are high risk for infections especially in women.

 

[fiddleplayer51]

Karin,
Your reply was so helpful! I'm sure many women (and men for that matter) who might also be pondering an in-dwelling catheter (foley catheter) will benefit from your excellent points. Thanks for sharing!
It's very true that in-and-out cathing throughout the day makes you much more prone to UTIs.
Take care,
Jane

 

[andyvaughn]

Roni,
I am going to chime in on the cath question. I am an RN, have changed a billion (okay, exaggeration, but a lot) of them. You shouldn't put one in just for the night, but rather put the catheter in and leave it. Frequent changes could greatly increase the risk of infection. A RN will come to your house every 3-4 weeks, and change the catheter. She will bring the supplies. The catheter can be discreetly put under loose fitting pants when out, with a leg strap. It should not hurt, and is rather easily adapted to. If it should pose problems, your husband can simply and easily remove it, have the RN leave a syringe and teach you/your husband how to deflate the balloon that holds it in place, then it simply slips out. Also, drink lots of cranberry juice daily to help prevent infections. Cranberry juice naturally provides protection against UTI's. Provided you have a RN do the changes, that the RN follows sterile technique, you should not have any problems. The catheters that attach to the outside of the skin appear to me far more irritating and prone to leaks than the indwelling cath. When I did home care I had several female, and male, patients with indwelling caths that were permanent, I never had one patient get a UTI. However, for safety and comfort, you may want to keep a prescription of a antibiotic at home, as well as some uristat, so that if a UTI does start to develop it can be immediately treated.
As far as hospice, I have never had any experience with it, but have read lots of patients that have been on hospice long periods of time, that are quite happy with the services. Just be sure that you understand all the fine print, and what treatment they will allow and not allow.
Andrea - wife of Pals Jim

 

[Roni]

Hospice and Catheter

Thanks again everyone, Been busy with all these appts. I started Hospice this past Tuesday, they are so helpful and alot of services. Today, I have an appt with the urologist. So should be feeling better later today. YA!

Roni