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Active member
Feb 27, 2007
Loved one DX
(Sorry this is a little long)
I don't even know what kind of advice I'm asking for, but maybe someone who reads this will see where I can benefit from something they know.

My mom is to the point where in my estimation, any day could be her last. Her breathing is so bad (a month ago her FVC was 24 and her CO2 was 45%); my dad is having a hard time waking her up a lot of the time and she cannot walk unassisted any more. She chokes on her saliva, constantly uses her suction machine - and barely ever uses her bi-pap (a point of contention right from the beginning).

She and my dad have refused all help from home healthcare; my dad does it all - bathes her, gives her her peg feedings, and (I guess) helps her when she goes to the bathroom (I don't know because they certainly don't discuss it with me). It is obvious to me that her hygiene (sp?) is not being taken care of properly, because there is an increasingly evident odor that, I'm ashamed to say, is very hard for me to stomach. My dad is 75, like her, and has gotten to the point where he is so confused about normal things - I'm sure because of his concern and focus on her. My opinion is that she really cannot be left alone for any time now, but my dad will go to the post office, go to the grocery store, etc., without someone there with her. It has gotten to the point where I think it's crazy bordering on dangerous.

Tomorrow, my sister is coming into town and she is going to sit them down and talk to them about Hospice - they will be very reluctant, we know. But, she's got an appointment for a Hospice nurse to actually come over and talk to them tomorrow at 2pm. If they refuse to accept the help of Hospice (which is highly likely), I seriously don't know what I will do. :confused: It is killing me to see my mom being so stubborn and my dad being so drained at having to do it all yet denying he needs any help at all.

Like I said, I don't know what I'm asking for here, but maybe someone can give me some helpful advice. At least I hope so.

Thanks in advance to anyone who can offer a word or two, and God Bless You!

I am sorry to hear about your situation. My heart goes out to your family. It is an awful disease!
Did you try looking into assisted living, Every state has a diffent version do a google search. They can help with bathing and personal hygiene, clean, run errands and alot of other things. It is for people who are unable to do for them selfs, but choose to stay in their house.
Hi Nicki- I see the reason for your concern. If Dad is starting to get a little mixed up he may not be thinking through this situation very well. I wonder if one of two approaches would work here: first maybe you and Sis together could gently and lovingly voice your concerns for this situation overwelming both of them. That might move things forward.

Or you could speak to Mom, woman to woman, maybe by starting with an announcement that you brought along some new shampoo and asking her if she'd like you to wash her hair. That should open the door to all sorts of other issues, like how you would hate to have to wait for a guy to decide you need a shower and how she must long for a nice bath....IDK, there's always a tricky road when we become the caretakers for our parents. Cordially, Cindy
Hi Nikki... I am so sorry to hear what you are going threw. It is very difficult to look after an ill loved one.

My brother and I chose to look after my mother without outside help. She too was reluctant to have help come in. We were lucky that her condition started to get worse in late June and my brother being a school teacher was able to be home with her during the summer months. I looked after all of her personal hygiene. It was not easy but I did what I had to do with the strength that God gave me. Once my brother went back to school in September I was going daily, before and after work. She would be home alone for about 3 hours. We were starting to get nervous on leaving her and I had given my mother the options of either me taking a leave of absence from work or we were going to have to have some help. The problem we had was that my mother spoke English but never learned how to write English. When she was no longer able to verbally communicate she would write to us in Italian. My mom finally agreed to have help but it had to be someone that spoke Italian which is hard to find in Toronto. I had placed a call to CCAC the day before she was admitted to hospital. Unfortunately my mom passed away by the end of the week.

I think there comes a time when there are no other options for them and help is required. You need to do everything you can to make sure your mom is safe and looked after.

Take care and God Bless . Anne
Hi Nikki

My dad also looked after my mum throughout her illness until it was suggested that she went into a Hospice for a couple of weeks for respite care & syptom control.

This may be an approach you could try so that it doesn't seem like you are suggesting your dad can't take care of your mum properly.

My mum went into a hospice on 5th October & we too thought she was nearing the end. within a few days they advised the MND was affecting her lung muscles and said that she only had a limited time left, from a few days to a few weeks, and that they would be privileged to look after her until the end.

She lived for a further 5 weeks and passed peacefully in her sleep on Monday 12th November at the hospice. My dad was able to visit every day, 24 hours if he wanted, help with her care, have input into how her medication was managed, and was relieved he no longer had the pressure of wondering if it was safe to leave her in case something should happen.

hope this is useful.
Rachel, thank you. I am so sorry that you have just lost your mother - I hope that you will know that in helping others like me, you are assuring that you mother did not die in vain and it honors her.
I see you are in England. My mother is English, too. I am happy to report that yesterday she agreed to in-home Hospice. At this point, only having a nurse in twice a week, but at least it's something. I feel more at peace about it.

Thank you everyone else who helped provide me with some options as I seem to have panicked.

I appreciate all your help!

God Bless You,
glad for you

Hi Nikki

So glad your mother has agreed to some help. I hope you find the Hospice nurses as kind and supportive as I found them this side of the pond.

Once she has got used to them she may agree to them visiting more often, at least it's a starting point.

Where in England did your mother come from? My mum originally came from Birmingham but spent the last 38 yrs in North London.

Thanks again Rachel. The assigned nurse came today and she was really nice. I'm glad they'll have that support! They even tentatively agreed to maybe having some home healthcare come in to help with bathing and stuff. So, we'll see how it all goes!

My mom grew up primarily in Bury St. Edmunds, Suffolk. Her sister is there still.

Small world! Bury St Edmunds is only 45 mins drive from me, Suffolk is next to Essex and I live close to the county border.

Good luck with the care, I'm sure it will make all the difference.

Hi Nicki,

I'm so sorry to hear about our situation. Maybe the Hospice nurse and your sister can convince your father that the time has come because your Mother is from what it sounds where her hygiene for a woman is not being met and that she can no longer be left alone. That you love him and so appreciate everything he has done for her up until now, but it is time to let professionals see that her care is safe and clean.

Good luck, maybe if he knows that other people notice the hygiene problem he will accept the help.

Hello Nicki , You and your sister are in a tight spot, I watched my father do the same thing with my mother when she had cancer, we pointed out our fears of our father becoming sick and not being able to look after her or himself and they were able to see the reason of it and brought in a careworker to help.

Best wishes
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