Just started PD dialysis - finding it tough right now

[myporkchop]

MyPorkChop-  I hope you and your mom are OK and safe after the tsunami that struck not far from where you live.  No one ever needs to be on the path of a tsunami, but with everything else you're going through, it's just one more insult to injury.  Please take care and stay safe.  K&S

Hi K&S, thank you for thinking of us. We were very lucky there were just little ones, but fortunately we didn't get struck by the tsunami. It was pretty frightening tho, the 7.5 mag earthquake that woke us all up, followed by evacuation tsunami sirens from the beach. I drove over to make sure my mum was ok, got her dressed and slowly got her in the car. We drove inland to the airport and sat there for 4-5 hours this morning while waiting for the all clear to go back home. I wasn't sure how long it was going to take so packed x4 bags of dialysis fluid and the bits and bobs to do the exchanges into my car, just to be on the safe side. Fortunately where we are in Christchurch, we were not effected as bad as the 2011 EQ, however some other parts of Canterbury were badly effected.

Thank you for your kind thoughts xxx

[Charlie B53]

I hadn't realized where you are.  Saw the news this morning has limited pictures of some of the damage, roadway broken, settled.  Wow.

Very glad to hear you are all doing O.K.

Even the synthetic pain meds can be constipating for some people.  Be aware.  Try to avoid white flour and cheeses, both greatly contribute to constipation.  Diets high in fruits and vegetables can help immensely to avoid constipation which makes PD very difficult to drain as the enlarged bowel tends to smother the cath and prevent efficient flow.

[myporkchop]

Thanks charlie   isn't it incredible how important it is to have clear bowels so not to smother the catheter. I hope you are feeling better yourself now? X

[Charlie B53]

I feel my normal irratated self.  I will be dosing my bags nightly for almost two weeks yet just to be sure.

Dr told me at Clinic yesterday IF the bug comes back it requires only the upper part of the cath be changed out.   Current thoughts are the bug hides in the threads of the titanium fitting connecting the upper and lower cath inside the body.

Even if that is so I would NOT have to have an arterial cath and do hemop for a short time.  Simple replace the upper cath part and fitting, go home and do  PD with smaller fills for the first week or so.

I can do that if needed, should be too big of a problem.  Like I've said before.  I must be Blessed.  This ain't so bad.


I am very hopeful it begins to work this well for your Mother soon.

[myporkchop]

Im glad you are getting back to your normal irritated self mum is back in hospital after she collapsed again this morning. At the moment no one really knows what is going on with her right now. They are treating her for a chest infection and still treating the urine infection. Tonight she started shivering and now has a fever. She is really worried for her health and so am i. I heard her say for the first time tonight "ihatedialysis"

[kickingandscreaming]

I'm really sorry your mom is having such a tough time, but it sounds like dialysis is the least of her problems.  Clearly, her overall health is very fragile. And dialysis is an extra burden.  I hope she (and her medical team)can get on top of it.

[myporkchop]

Thanku k&s u are right, she just has a whole range of health complications adding to her dialysis. She feels like she has to blame something for her troubles and so blamed her dialysis. I just feel so sry for her right now. But i feel safer her being in hospital and so does she so that's a good thing x

[Charlie B53]

Hospital may be the perfect place for her right now.  They will keep a close eye on her sugars.   They sure did with mine.  Home I average 120's to 140's.  Hospital they kept me mid 90's to 120.   And I ate most everything they gave me!   This pretty much proves I done eat right at home.

Once they get her sugar down then PD will really begin to take off excess water from her system, easing her breathing, heart, reduce any swelling.  Hopefully Mum will notice she begins to feel better.

Prayers she feels better quickly.

[Fabkiwi06]

Lots of good thoughts to you and your family now. It sounds like there's a lot going on with mom. I'm glad she's in a place that can respond to each issue with something that can help set it on the right track. 

[myporkchop]

Thanku for your lovely comments. The doctor came in to see her this morning and they said they are really worried about all of her health complications and don't think she will live very long. They then said she should consider going into a home or hospice type place to ease some of the burden on me and give her a better quality of life. I am absolutely devastatedi don't want her to go into a homr or hospice i want to look after her, but don't know how i would survive without pay

[kickingandscreaming]

Oh, I'm so sorry, MyPorkChop.  No one ever wants to get news like that.  It is wonderful that you are such a devoted daughter.  Your mom has been very graced that way.  But full-time caregiving is a huge stress and committment.  And not always best for the patient, either.  During a period when my husband was dying (Leukemia) I was a full-time caregiver.  It is impossible to know--from the outside-- how difficult that is.  Although it was an honor to be with him under those circumstances, it was also suffocating.  And I gave up practically everything. After he died, I was pretty hollowed out. And my own health took a beating. It's so important to take good care of yourself as well.

Clearly, adjusting to the idea that your mom's time is limited is huge--scary and sad.  Then having to make a decision about what role you will play in her care is also huge.  Do you have such a thing as hospice-at-home in NZ?  In the USA, people stay in their own home and are visited regularly by a team of helpers, and the family plays a supporting role.  Is that possible?  What about other friends and family?  Is anyone else available to help out?

[myporkchop]

Thank you K&S, I am sorry about your husband and what you had to go through. I understand completely.
I have been all over the place with my emotions. We were both in tears again today when talking with the social worker about options. I think deep down she want to stay at home but doesn't want to be a burden on any of us.
I told her I would be taking the next two weeks off work until we can work out what to do (for example, take the bath out of the bathroom and knock out the wall to the toilet, making more room for a wheelchair etc). She told me that she doesn't want me taking time off and would like me to try and carry on with my own life. It is hard as I want to look after her, but I understand the stress she feels. My dad lives with her and can help out, but I see him getting stressed at just the little things and yells at her to "just wait". Then if my mum gets upset he gets all upset and sulks leaving her on her own and storming out. That makes me really mad when he does that because I think he just needs to support more rather than take things personally. I try and tell him, when mum is irritated it may be because she is tired and not feeling very well, but he just cant seem to accept that and takes things personally it is so frustrating.
I have a brother who lives with them, he said he doesn't want my mum to go into a home and we will all try to look after her - he does nothing to help. He is never home.

I spoke to the social worker today and physiotherapist about what they can do to help us at home. The physio has given us a 'gutter frame' to help her more with walking and give her more stability when her legs get weak. She has also given us a wheelchair so we can take her out and about rather than being stuck at home which she has been doing (if not in hospital). I have home help coming once a week at the moment to help with the house work, although we are hoping for twice per week. We will also be getting caregivers to help with showering three times per week (which will be good).

We really have to work on this bathroom.

They talked about respite care in the event she wants a break from home or to give us a break. The doctor said today they will give us one more chance to look after her at home and if it doesn't work out then she will need to go into a hospital type home. Its so sad she is still so young.
They said there are only two retirement villages/hospital in Christchurch that have trained nurses in dialysis so they are the only options for her if she decides to go.
We don't really have any family or friends that would be willing to help out, it is usually just me on my own.

Thank you for your thoughts xx

[Charlie B53]

Many Parents are very well used to being independent.  With a long history of taking care of US, they are unwilling to allow their children to care for them when they need it.  Faced with bodily failures, it isn't easy for them to admit that they need the assistance of another person, and can become quite belligerent when their children only want to return the Love and Care they have received from that Parent.    It can be difficult to convince them that this care is freely given out of Love.

Very often the Mother/Daughter bond is far greater than the Mother/Son relationship.   Belize that your Brother may still care, he just doesn't know how.   Dad may be terribly frustrated that this is a situation that he is powerless to correct as well.  He doesn't know what to do either, and the inner turmoil drives him to withdraw.   You may best take charge in a roundabout manner.  If you TELL Bother and Dad what to do they may anger and refuse.  You need to choose your words carefully, make suggestions,  "If you could find away to help Mum by ....."   May be more acceptable to them rather than telling them straight out to do something.


Patience is difficult, but it helps immensely.

I hope this helps.

[myporkchop]

Hi charlie i think you are spot on. My family hate when i tell them what to do, i don't blame them. I know they both care of course they do. Thanku for your good advice i will take it on board that actually helps a lot xx

[Fabkiwi06]

I'm so sorry MyPorkChop that this has been such a difficult journey for your family. Sending all my love your way.

I think Charlie is spot on with everything (as usual). Situations like this don't come with a "how to" guide and each person deals with it their own way. Y'all have had wave after wave of new challenges with Mom that I'm sure you're all beyond frustrated with everything.

I hope in all of this you're able to carve out a little time to take care of YOU as well. Your own health and well being are also so important and part of caring for others is making sure you're caring for yourself.