rosehi
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I am new to this forum and my experience with this disease is very limited since when my dad was diagnosed, our only option was to arrange in-home hospice care and so that is what I can speak about. Since that was originally recommended for your mom, would her doctor do so now?
In our case (I live in Hawaii), with the particular hospice we chose (there are four different hospices here), a nurse case manager comes once a week and a social worker comes once a month. Equipment for the home is also delivered if needed (a bedside commode might be helpful for your mom). Trained volunteers can also come once a week (run errands, etc.) and there is spiritual guidance if desired. Nurse’s aides will also come to the home several times a week to help with care if the nurse case manager authorizes it and respite care (five days per month) at a stand-alone hospice home is also an option.
The hospice people were terrific and they were there for my brother and sister-in-law when things got overwhelming (there’s 24-hour availability by telephone and a hospice nurse will come out to your home in the wee hours of the morning if need be!) So, if that is an option for your mom, please ask her to consider it.
I knew my brother would not be happy about strangers coming in to his home to help with dad’s care but they were all professional and tactful and I am sure that he has no regrets about the experience.
I do want to add that when my father-in-law was diagnosed with jaw cancer, it was not a surprise. He was in his mid-50’s, had smoked since he was 12 years old and was also a pretty heavy drinker. Even after going through a disfiguring operation to try to remove the cancerous tissue, he began smoking again. The only reason he finally stopped smoking was my mother-in-law’s brother talked to him and told him that this was really upsetting his sister. So perhaps if your mom has brothers or sisters or a close friend her age who can talk to her about this?
I hope this helps – take care of yourself and your family – encourage your mom to reach out for some help –
Hi Lainy –
I had been reading your posts about your visits from Teddy and was thinking about sharing what happened after my mom passed away.
I was extremely tired when I got home the night after mom died and I feel into a deep sleep. At 4 a.m., I heard her call my name but it was how she did it when she was upset with me. So, I crawled out of bed and at 4:30 a.m., I was trundling down the deserted aisles of the nearby 24-hour Safeway (the first and only time in my life). I guess she did it to make sure I had food in the house although certainly she also knew that I was not the cook she was!
Well, after that, there was absolutely nothing and I felt a little hurt that the one time I heard from her, she had sounded so sharp.
About six years afer mom passed, my long-term relationship with a boyfriend ended and it was a very tough time for me. I took to going to Punchbowl to see mom every weekend and after I left her flowers, I would go up to the look-out. From that look-out, on one side, you can see the whole city below and the other side, you can see the whole of the cemetary. I would look at the columbarium where mom rests and I would so wish that she were here so I could talk to her.
One sunny summer day, I was walking down the broad bricked pathway from the look-out to my car when I saw a bright twinkling (immediately fairy light came to mind although this was in bright sunshine) which danced in the air. I kept watching it as I walked down the path and this light kept twirling in the air and drifting slowly down the path. I finally neared, reached out and caught it in my hand. It was a square of textured, clear plastic wrap (like what might be placed on the top layer in a box of candy.) I looked at it and said “hi, mom.”
I folded it carefully and it has ridden with me since in my car console.I got some strange looks when I describing hearing mom call me so I didn’t tell anybody about what happened at Punchbowl. After reading about your visits with Teddy, I know mom came to see me because she knew I needed her.
I take my dog walking every morning and as I mentioned, it’s been cold and rainy. On Saturday, when I looked up, there was a big, triangle-shaped patch of clear sky with the gray rain clouds streaming past and this morning, there was a big square of clear sky with the gray clouds surrounding it. I think mom and dad are looking down to check that we’re OK.
So, Lainy — I’m with you 100%
We’ve been having quite a bit of rainy weather these past few weeks and every morning, I would watch from the sliding door in dad’s bedroom as the clouds gathered in the valley and then it would shower several times. On Friday, it was a little cloudy in the early morning but when I arrived to see dad, the sun was out and shining brightly. After the nurse’s aide came and we were talking in dad’s bedroom, the aide was startled to see a wild pig in the garden (they often wander down from the mountain but my brother said they usually don’t
come out until the afternoons). My brother ran outside to shoo the pig away but a minute later, the aide saw the same pig and two more running through the garden. My brother went out and chased them away. But I think they came to say “good-bye” to dad.That afternoon, the clouds briefly gathered and there was a very light shower and a beautiful rainbow appeared. Hawaiians believe showers are blessings and I think that was for dad. Then the sun came out again.
It was still sunny and bright when dad left. The two days since have been cold and rainy again.
Pam and Lainy –
Thanks – it was a sleepless night – finally, at 4 a.m., I looked up at the ceiling of my bedroom and realized that I am surrounded by his love — he built this house and he’s still all around me
Marion —
I remember the resident coming into my mom’s hospital room to pronounce her and finding us all crying. He turned to the nurse and I heard him say “didn’t the family know she was going?” before the nurse literally pulled him out of the room. I always wondered if he decided to remain in medicine.
My mind knows that dad is going — my heart no.
Thanks Marion –
I was thinking about another post from the son whose father had just been diagnosed. One of his comments was his worry whether he could also have the disease.
At first this bothered me but after mulling this over, I think dad’s diagnosis and decline over the past few weeks just brings up my brother’s fears about his own mortality. (He has a chronic disease and over the past few years, it’s been getting worse.)
Well, hoping that today is better — Mahalo
Thanks Lainy – I just had to leave when my brother finally admitted he hadn’t been following the nurse’s recommendations. I was able to talk to both the nurse and social worker privately and asked each of them to stress the importance of following the medication recommendations. I don’t think my brother realized the seriousness of a pressure sore until he saw the nurse’s and my faces when we saw it!
We have a hospital bed and an air mattress. Thanks for the advice about the lamb skin — I have one so will wash it and take it over and see if my dad will be OK with it. I took over a foam “donut” today and they were going to try using that. He’s been pulling the sheet protectors from under him as well as throwing the pillows, sheets, etc. off the bed so we’ll have to see if either works for him.
Thanks for listening — it just got to be too much today!Dear Sistercorb –
I read your posts — I’m so glad you were able to celebrate Father’s Day with your dad!
When we got the diagnosis five weeks ago, they said my dad had “weeks” — I didn’t think he would be here on Father’s Day and he was!
Hi, Gavin –
It’s hard to tell about his pain as he can’t tell us much – the skin of his feet and backs of his hands seems very sensitive as he’ll flinch if you even touch them and he’s been resisting wearing the diapers — so I was wondering if he’s experiencing the burning sensation in the skin that I read about in a couple of posts —
We’re using the long-acting morphine but will be talking to the nurse tomorrow — it’s hard to tell if the morphine is helping and the nurse mentioned she could discuss use of Methadone with the hospice doctor.
The lactulose seems to be working well but we’ll have to monitor it carefully as his stools are getting very soft and we’re worried he’ll start having diarrhea.
As the nurse said, we won’t know until we try and every person’s reaction to medication is different. So, onward…
Lainy – They prescribed Lorazepam for anxiety and we gave it to my dad once – didn’t seem to have any significant effect although the nurse said for most of her patients, the Lorazepam has been the best for sedation — however, the haloperidol seems to do that for him so we’ll be continuing that — the nurse said the morphine and haloperidol together work well.
It’s just hard — today was the worst I’ve ever seen him and all of a sudden, it becomes so real!
Marion –
Thanks for your response — we met with the nurse case manager this morning and she suspects my dad’s complaints of pain might be due to delirium from the build-up of the toxins in his body.
He was just started on a cholesterol-binder and lactulose (for the constipation caused by the morphine) so he was finally able to move his bowels. Unfortunately, that hasn’t worked as we had hoped as this morning, he’s much weaker and for the first time, was not able to feed himself.
The nurse recommended we continue with the long-acting morphine and haloperidol. She’ll check with us on Friday to see how everything is going and if need be, discuss with the hospice doctor if we should try methadone instead.
So, I guess all you can do is get through the day and see what the next brings.
Lainy –
Just to let you know that hospice ordered Cholestyramine and Lactulose for my father – according to the drug sheet, the cholestyramine is supposed to bind onto cholesterol and the most common reaction is supposed to be constipation so the lactulose will counter that and also the side-effects of the morphine — after taking one dose of both, he finally had a bowel movement (after two days without any) — I was hopeful that he would feel better but instead, he didn’t want to eat this morning and was all curled up in bed.
I guess all we can do is deal with whatever each day presents – and each day has been so different!
Yes, the nurse case manager has also been stressing watching him because of the danger of him falling. Yesterday, he got out of bed and somehow lay down on the floor! It took hours before he agreed to us helping him up and even with his actively trying, it took the three of us to get him on to the bed. It was harrowing.
Mahalo for all your kind thoughts!
