What’s going on with mom? Help!
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Dear Twolf,
I agree that its time for a change at your house. For your Mom’s health and safety and for your own mental and physical health. I have been raising my girls and caring for my dad who recently passed and who had Alzheimer’s for the past 3 years. Fortunately, DaD had purchased long term care insurance which helped him get short term help in his home and then we moved him to my town to assisted living. Because assisted living is not nursing care (though they do manage medications and have dementia care). When DD had a medical problem, I’d take him initially to the dr and then they would order home health nurse visits for follow up. Eventually I got DD on hospice and he qualified mainly for the dramatic weight loss/lack of appetite. This is called “failure to thrive”. It turned out to be a huge relief to have all medical care triaged at home rather than the revolving door of ER and Dr visits. He stayed in his assisted living apartment and they brought him everything he needed, including a bed, walker, wheelchair, meds, medical supplies depends and wipes. All, even the meds a d delends were covered by Medicare, which surprised me (Dad had Kaiser but everything changes once on hospice and its a huge relief not to run to pharmacy etc).. Looking back, I wish I had sought that sooner as it really did improve his quality of life. What they DON’T provide is supervision…they just come for bathing or medical eval and tx and then leave. This is where I believe your Mom would benefit from bei g in a nursing home or hospice facility near your home. I was able to spend lots of time with my Dad simply loving him and reassuring him (as well as decision making and managing his care). I think it was good for my girls also and they were able to visit him but go on about their childhood without being completely traumatized by the situation. They visited short visits and were there for blessings near the end. There were many times I hired private caregivers (there are lots of people looking for work) in addition to the ones provided by the assisted living because Dad needed extra supervision at night as he was pulling out his catheters repeatedly so was a risk to himself. I also bought a bed alarm for night. He was ambulatory till the last week so he really needs lots of eyes on him. Trust me, you can not do it alone and may have a nervous breakdown trying. Marions is right: your Dr is a good place to start gor a referral to a social worker. In Califirnia, the Dr has to agree that a persons life expectancy is 6 months or less to qualify for hospice. Hospice reassured me that it died t mean your loved one has to stay on it, or that they won’t have good medical care. They may graduate from hospice and later use it again if needed.. Hope this helps!I am so sorry to hear about your Mom. I agree with Gavin, that it has gotten to the point (the way you are describing it here) that you need to reach out to get some help. I would suggest asking your oncology to refer you to a social worker. For me there was one at the cancer center, but your doc may be private and have someone he refers to.
The social worker should be able to coordinate services for you and your Mom which may or may not include Hospice. The burden of discovering services in your area should not be yours alone, a good social worker or care coordinator should have the names of places to contact and can even contact them with you there to guide you through the process.
I have a father-in-law with dementia and he is in a nursing home. There is no way we would be able to take care of him at home and keep him safe. I feel your pain.
You are not alone Terri, there are so many out there that can help. You know you have our support here online, but please reach out to get the help you need from those who know what’s available that would fit your needs locally.
Take care and keep us updated.
Hugs,
-Randi-Forgot to say as well, yes I am caring for my mum, she has copd and has had 3 heart attacks as well.
Stay strong Terri.
Hi Terri,
Thanks for that. One of the possible side effects from Gemcitabine is a rash and itching so it could well be the case that this is happening to your mum right now. This is definitely something that you should discuss with the onc this week as there are various creams and stuff that can be giving for this and it is something to keep on top of.
There are many discussions here on the site about rash/skin problems with chemo and here is a link for you should you wish to read some of them –
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=2035871173
The staring blankly that you talk of, well that could be chemo related as well but with the dementia as well it would be hard to tell. But that is something again that you should talk with the onc about as they will be better placed to help with that.
This did not happen with my dad as he did not have chemo. He was admitted into hospice care after suffering from nausea and vomiting for quite some time and they took him into hospice care to try and get to grips with that.
Glad to hear that your mum is showing no signs of jaundice as that could indicate other issues that would need to be investigated asap. Once again I would urge you to speak with the onc about everything when you meet this week as they will be able to help best. And please remember that we are here and let us know what the onc says as well.
My best to you and your mum,
Gavin
Hi Gavin! So nice to hear from you! My mom is on GEM for chemo and she seems itchy where the rash is as well as her leg which does not have a rash. Yes my mom does have a metal stent and I have not noticed any signs of her being jaundice. As for what’s going in her head I wish I knew! She seems to be fading away slowly ! Is that what is was like with your dad? And now your caring for your mom? You are a great son helping both your parents and all of us here! God bless you Gavin
Hi Terri,
I’m real sorry to hear what your mum is going through right now, and having been the carer for my dad during his fight with CC and being the carer for my mum right now, I so know that you have so much to deal with yourself right now. I had a quick look over your earlier posts to have a read about your mum. No wonder you feel so mentally drained at the moment, I can relate to that.
I seriously think that you are at a point where you need help to care for your mum right now. Caring for someone with CC is hard enough for anyone and with your mums dementia and you having 2 children as well, I really think that you need help. You mentioned before in a post about your sisters, have you had any contact with them and could you not tell them the situation with your mum? I really think that it is time that they stepped up and helped you out. It is not fair that everything is down to you alone, not fair at all IMO.
I know that you mentioned hospice before as well. I think that hospice care for your mum will be a great help to you as well. They will be able to take care of mums medical needs and do things that you might not be able to do, and they will help take the pressure off of you as well. My dad went into hospice care and the care that he had was excellent, plus it was very reassuring for us knowing that medically he was in good hands.
I have no personal experience with chemo as my dad never had it, but the rash on your mums chest could well be a reaction to the chemo that your mum is on right now. What chemo is she on? The not eating is something that should be addressed as well by the onc along with your mums weight loss. 50lb is an awful lot of weight for her to lose, and I am assuming that she has lost this weight quite quickly?
Also, you say that your mum is a little itchy as well. Is this around the area where the rash is or is it all over her body? Does your mum have any jaundice right now, yellowing of her eyes or skin? Your mum has a metal stent as well does she not?
I am very glad that you have reached out to us here as we can so relate to what you are going through at the moment. I am sorry for all of the questions that I have asked as well. Please Terri, keep coming back to us here and we will help you as best as we can. I am very glad that you are taking your mum to see the onc tomorrow as hopefully he/she will have some answers to some of the things that your mum is experiencing at the moment. Please let us know how the meeting with the onc goes as well. And please know as well that we are all here for you and we care.
My best wishes to you and your mum,
Gavin
My mom is 81 she was diagnosed w bile duct cancer in jan. she started chemo last week. She also has dimentia . This week I noticed a rash on her chest , thought it was shingles but blisters never surfaced, she has been a little itchy, which I have used calydryl for. This morning I heard my dog crying only to find mom with a loaded clothes basket in my driveway she told me she was going home. I got her to come back inside . I’m so mentally drained. I work full time have 2 small children and I’m trying so hard to keep her safe and happy. She barely eats has lost 50lbs , stares blankly , I don’t know hat she is thinking about . I don’t even know what I’m getting at with this post, just reaching out to anyone who has had similar experience. I’m taking her to onc tomorrow morning maybe he can tell me if something more is going on. I don’t know any of you but I read a lot of posts here. I feel like we r a part of a family , I’m so glad I found this site! Blessings to all of us!
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