Caring for an Elderly Parent with Dementia and an Ileostomy

Hello, I am here to find support and advice regarding my elderly father.  He is 91 y/o and has had an ileostomy for the last 11 years.  He had back surgery and contracted C-diff, he developed mega colon and had to have an emergency colectomy.  He has managed his ileostomy very well up until now.  He has developed dementia, he forgot to order supplies, and has had some episodes of accidents.  My 90 y/o mother was in a bad car accident, leading both of them to be moved from their home into assisted living.  She is very bitter about this and is taking it out on everyone. The assisted living place states they will do nothing to help him regarding his ileostomy, which upsets my mom even more and she blames him for having this issue, and she cannot/will not deal with it any longer!!  Apparently this is considered skilled nursing, even though a few of the staff had no problem with it. They are basically saying he will have to go elsewhere.  So, I am going to bring him into my home, which is 8 hours away from her. So, I will be dealing with his ileostomy, if/when he has issues. I think once we get the supplies he will be able to take care of it appropriately, at least for the time being.  I am a registered nurse, but have never had to deal with ostomies in my practice. My spouse is a paramedic, so I think we can handle my dad, and get him out of the dysfunctional environment he is currently in. anyone else dealing with this with dementia patients? Thank you.

Hello klnc.

Thank you for sharing your story with us and I hope that a few will have come a cross similar situations and put their minds to empathising and making some useful suggestions.

You do not say how bad your father's dementia is. However, at his age it is only likely to get worse over time.  

Firstly, I feel I must congratulate you on you decision to try to manage your father in your own home. You deserve the Congressional Medal of Honour  (or whatever is the most prodigious   Gong your country has to offer. 

Managing dementia effectively is not something that everyone is capable of undertaking and quite often residential care just makes their situation and condition worse. 

My own take on this is that I deal with dementia patients on a daily basis and the problems you point out are only too familiar.  Your greatest asset and skill  will undoubtedly be 'endless patience' (possibly coupled with a heart of gold). 

I often joke that dealing with dementia is an 'effing' mammoth task , in that what's needed is is an approach involving Friendliness, Firmness, Fairness and Full-on commitment.

The fact that your father has a stoma could be an asset, as many of my clients are incontinent and a stoma can sometimes be  more 'manageable' than faecal incontinence. As you have hinted: being a nurse and having a paramedic as a spouse gives you a head start on many relatives who have never had to deal with with dementia before. Having the relevant supplies and equipment will help a lot;, also, it helps if you have some understanding/ experienced  friends and/or professionals to step in and help occasionally - (they can be worth their weight in gold).

Just as you have made contact with this site because of the stoma issues, it might pay to make similar contact with people, like yourself, who are dealing with dementia on a daily basis.

My mother had dementia for years and we managed her at home. The small community where she lived was extremely helpful when she did extraordinary and sometimes socially unacceptable things. So, whilst there might be a tendency to want to keep quiet about what you have to deal with, there can be great advantages in sharing your experiences with others. You might be surprised how common the problems are. My sister is presently going through a similar transformation of personality with her dementia and her husband calls on me to keep her company on the occasions when he needs to be elsewhere.  

Back to managing the stoma:  Your attitude and behaviour in the presence of your father will be crucial in getting him to cooperate as much as he is able. 

In addition the the four 'F's mentioned above I would encourage you to consider my own 'Aims' For Today', which are quite useful guides when the going gets tough.  

 AIMS FOR TODAY
1.    To BE – THERE
2.    To be CONSISTENT
3.    To be HONEST, GENUINE & SINCERE
4.    To be NON-JUDGEMENTAL
5.    To LISTEN: Empathetically
6.    To keep things CONFIDENTIAL
7.    To ENABLE & EMPOWER (DIY process)
8.    To show POSITIVE REGARD (unconditional)
9.    To show RESPECT for INDIVIDUALITY
                                        FEELING & NEEDS
10.  To FOCUS CARING (according to my principles)

I have found it interesting and instructive over the years to recall that these 'AIMS' were developed from some early studies of people and their pets. When we take on the role of keeping a 'pet', Many of the tasks are not a million miles away from caring for someone with dementia, in  that their ability to reason, recall and restricted care for themselves are diminished to such an extent that those tasks become the responsibility of the 'care-taker'.  

Of course, I am well-versed in the art of dealing with my own 'shit', so cleaning up after other people comes as second nature.  It doesn't matter that they no longer know who we are, what matters is that they recognise and respond to genuine kindness, understanding and a willingness to be patient with them.  (just as a pet would do each time you come back from being away !)  The rewards of being a 'carer' in difficult circumstances are not easy to summarise in just a few words, but those who have chosen to undertake this role will know that they are unique in the showing the rest of the human race how 'kind' people wish the world to be.

In conclusion, I have recently completed my latest book on 'kindness' and on Pages 186-7 I paid rhyming tribute to the incontinence nurses who help me through a difficult time of my own ( before my stoma).  I hope you like rhyme, but if not, I'm sure you will understand the sentiments expressed:   

Best wishes

Bill

 

KIND PEOPLE –(Inco’ nurses)
 

I have been searching in my mind,

for people whom I thought were kind,

when I recalled those inco’ nurses

who understood expletive curses.

 

Those curses, when intolerance

was caused by my incontinence,

which often made me so frustrated

I’d rant about this thing I hated. 

 

Most people won’t experience, 

the filth and inconvenience

and faecal disobedience 

accompanying incontinence.

 

But here and now, I should confess,

that cleaning up the awful mess,

is a small part of the problem 

that leads to cursing and venom.

 

The biggest problems come when I

wish to give up or simply cry.

It’s times like this, we need someone

to talk things through when we’re undone.

 

I should not have been surprised

that nurses who have specialised

in such an area as this 

could help me with my catharsis.

 

They listened to my tale of woes

and helped me fight my inner foes,

without a hint of judgement and

persuaded me they understand.

 

I’m sure they do this everyday,

but manage it in such a way

that I can feel my situation

was worthy of evaluation. 

 

                                                            (àcontinued)

 

KIND PEOPLE –(Inco’ nurses) -> continued.
 

I can’t imagine there’s much worse

than this, the role of inco’ nurse,

dealing with piss and shit each day,

knowing it won’t go away.

 

They must have enormous patience,

dealing with frustrated patients,

who don’t wish to seem too mean

but sometimes need to vent their spleen.

 

People like me, who have their say

and then, can simply walk away,

feeling relieved that someone heard

these stories that seem so absurd.

 

It’s now I can reflect somewhat

about the great support I got,

and feel  that this is now the time

I thanked these nurses in my rhyme.

 

But, if I had my time again

and set aside the angst and pain,

I’d not have waited for my pen,

but would have thanked them there and then. 

 

The kindness that these nurses show, 

helped me to grow and thus to know

more about my situation

and about my limitations.

 

And I am truly thankful for

their wealth of wisdom and much more

than just a simple listening ear

about the angst, the pain and fear.

 

I wish to thank these nurses too,

for their kindly point of view, 

which means a lot when you’re in pain

and someone else helps take the strain. 

 

 

 

                                                  Be Withers 2021

                             (in: Be Withers Be KInd. 2022)

 

  

   

You guys will do great! And lots of help here on this site. Plus at uoaa.org, the Phoenix  and find you local WOC nurse. 

I will be praying for you

cplumber