Mom - sudden and scary
Firstly, my heart goes out to all of you. Your stories are both inspiring and heartbreaking.
One month ago, I got a call from my mom's caregiver that she had fallen and was being rushed to the hospital. Mom still lived alone, but I had set up a program so a caregiver came to visit once a week. I rushed to her apartment and met up with the ambulance and then went on to the hospital. During the initial emergency room exam, it was determined that she had a broken tibia and fibula in her right leg (two days later, they figured out that her left femur was also broken). When they undressed mom, I was shocked. She had a big ulcerated wound on her left breast. She had been telling her caregiver that we were treating it at the dermatologist, and frankly was just lying about it. Me? Well, she had completely hidden the wound from me. The emergency room doctor gently informed me that Mom's entire left breast was essentially a cancerous tumor. Wow, was all that I could think.
Mom spent the next week in the hospital, with me by her side. She celebrated her 79th birthday there. They operated on her legs and put in metal plates. From there, I had to transfer her to a nursing home for rehab of her legs, and treatment of her wounds. I knew that meant that she wasn't coming home. Since then, I have focussed on getting her adjusted to such drastic change in lifestyle and also taking care of so many many many arrangements and details. One of the hardest things has been closing down her apartment and giving her clothes to charity.
Anyway, I know that I am rambling, but it helps. So she is now in the nursing home. Her legs are recovering, but she will never walk again. Meanwhile, she has developed a serious infection in her breast (Cellulitis) that has caused her to be transported to the emergency room once so far. The infection gives her a fever and increases her nausea. I have discussed everything with the nursing home and Mom's doctors, and we have all agreed that all that we can do at this point is to try to make her as comfortable as possible. We are not treating the cancer directly, as it is too advanced.
Mom is still lucid, although she has some dementia. She seems to be in denial about the agressiveness of her cancer and that fact that she is facing death. I am being gentle with her and asking her if she has questions for me, but I am at a loss as to what I should do. She is getting excellent care at the nursing home, and they have discussed hospice options with me. For now, it seems to be day to day as to how she is feeling, how severe the infection is, and whether or not she will eat anything.
Thanks for listening.
Comments
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I am so very sorry that you and your mom are going through this. You sound like a wonderful daughter who is doing the very best you can do. Denial is not a bad way to deal with what one is enduring and it sounds as if your mom has chosen that route. I think you probably have no choice but to continue to offer (gently, as you said) to listen if she chooses to open up. Please feel free to come here often. IMO you are doing everything right.
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Thank-you for the support. I just visited her for lunch and her white blood cell count is back up to 15,000, which is worse, but not as bad as it was when it was 30,000. As I have told my husband, normal has shifted. It seems that things are just now on a scale of bad or worse. and I will take bad over worse any day.
Luckily, I found her a great nursing home that is only 5 minutes from my office, so I can visit at lunch and after work. It is also only about 25 minutes from my home. She's settled in, but the loss of independence, the noise, and the need to conform to someone else's schedule is a difficult adjustment for her. I put the Animal Planet on her T.V., and we watched some show about rescuing exotic animals. It was a nice moment. I'm just trying to do the best that I can for her.
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Fangirl, so sorry to hear your sad situation. My mother is also in early dementia and seems quite lucid. Unfortunately she believed she was taking her insulin and other meds yet they were still in the fridge untouched. We ended up putting her in an aged care facility where she has her own room and it's interesting to note that she, along with the other dementia patients, all believe they are perfectly able to live independently, that they just have a little memory problem. It's not denial, their memory is that they live fine on their own and they forget more recent events. It's likely your mother really believed she was seeing a dermatologist.
Mum's reasoning is hilarious. She has a perfectly logical sounding (to her only) explanation for everything. People who don't know her history are easily fooled. I found that the best way to deal with her is to chat about anything happy and positive, make up some story about why she is there and why she has to comply with routines and when she's unhappy, acknowledge her feelings then gently and gradually distract, distract, distract. When one explanation doesn't work I think of a different one next time the subject comes up till one works. She is so much happier now. These strategies may not work if your mother is in very early dementia.
Mum is clearly not well physically though not with anything that has been diagnosed. She gets breathless and dizzy easily. So for me the name of the game is to make her happy at all costs. If you can buy or hire your mother some DVD's she likes as much as the Animal Planet ones, that would help. When my eldest sister tells her she has Alzheimer's she's always shocked and upset and then forgets but remains sad. I really don't see that it's helpful to be honest at this stage.
We also had a hard time dispersing her belongings and some siblings think we should not be doing it even though we have power of attorney so it looks like her belongings will remain in storage for now.
I hope your mother's mood lifts and she can be kept as comfortable as possible. So many in the nursing home have no or infrequent visitors. You're such a wonderful daughter.
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Sheila, I am very sorry to hear about your Mom. Your experience helps me to feel a little less alone in this.
I think that the short term memory loss is probably her mind's own protective mechanism. When the nurses have to move her (i.e. clean her, do any medical procedures, or get her up into a chair) she absolutely panics. It is so hard to see her so scared and quite childlike. She clutches my hand and moans about how terrible everything is. If I visit later that same day or evening, she may be completely fine and have forgotten the whole experience.
The one thing that I am trying to remind my mom about is that she will "catch more flies with honey". She sometimes accuses the staff of being mean to her and is rather cross and mean with them. I certainly and keeping my eyes and ears open regarding any potential abuse, but I haven't seen anything. The mean-ness she is referring to is just them having to roll her to her side to bathe her, or helping her up for some physical therapy.
I love her so much, and this is so hard.
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Cyber hugs to you....this is such a hard part of the journey. Your mom is so lucky to have a wonderful and loving daughter there for her during this time.
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At a certain age it is all about losing your dignity. It is embarrasing to have someone bathe and feed you. It feels like you are close to death and there is nothing you can do about it. Eventhough my father went to live with my sister when he became incapacitated he still was not comfortable having someone take care of him, when he just months before was taking care of himself. You are a good daughter to be there for your mom.
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Fangirl, being paranoid is typical of those with dementia. Mum thinks everyone is stealing from her room. One day she said someone had been in her room and stolen her (used) toothbrush. It's hard to keep a straight face sometimes. She is sometimes rude to staff and other times a sweet old lady. The staff there expect this as they work with dementia patients every day, but in general hospitals they don't all get it which can lead to rudeness.
She told my other siblings that my sister and I plotted to get her into the home and have stolen her possessions. This is the way she explains away how she got there. The other siblings have all been very critical of us and think we have done the wrong thing. I think she has fooled them by seeming so normal the few times they have visited, though she did make two amusing mistakes that surely would have set them straight about her capabilities.
My mother has resisted showering for the four months she's been there. I think she has showered two or three times when we said we'd take her to a big family event as long as she was showered and washed her hair. All the other residents go to breakfast in their dressing gowns and are taken by staff to be showered so staff can check for medical problems. I can understand the humiliation people feel but you have opened my eyes to the dangers of not having her body checked. Actually her teeth were falling out and she needed lots of dental work. She also panicked and screamed throughout the dental work. We took her out of hospital where she was being assessed to see the dentist as they weren't getting a dentist in.
I found a support group for carers of dementia sufferers to be enormously helpful as they where able to normalise so many things. Also the staff constantly reassure us that mum is very like the others, only a lot more stubborn. It's the details that help me, when I hear that others in the home do the same thing, then I feel it's "normal".
To have a parent with dementia, injuries and so ill, all at the same time must be so hard as there's so much to wrap your head around. We need to come to terms with the new normal and mourn our former mothers who no longer exist except in our memories.
Oh yes, that reminds me, if you try taking a different photo album in each time you go and talk about the good old times she will be transported back to happier times and it will help her feel she has a life. If she compares then to now, just reassure her she'll be back to her old self as soon as she get's better. You don't need to tell her she will never get that well again. It's all about illusion.
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Sheila, your words really echo with me. In particular, the part about, " when I hear that others in the home do the same thing, then I feel it's 'normal'." I keep asking the nursing home staff the same thing. I say, "Please tell me that she isn't the only one who acts like this."
Yesterday was a big day. We transported Mom (via ambulance) to the hospital for a procedure. They inserted a "picc" line so that they won't have to keep starting new IV's in her hands. This way she can get her intravenous meds much easier. (mostly fluids and antibiotics) Luckily, she didn't have to spend the night at the hospital, but got to return to the nursing home in the evening. It was scary for her, but she was pretty brave. The procedure itself, was quick and pretty painless.
Me? I spent the day in uncomfortable hospital recliners answering the same questions over and over again for Mom. Of course, I don't get upset with her, but inside, I am very frustrated at having respond to the illogical nature of so many of her thoughts and questions.
I am sorry to hear about the conflicts that you are experiencing in your family. Luckily, I haven't had to deal with any intra-family drama, as my mom doesn't seem to think that I have taken advantage of her in any way, and my sister is completely supportive of my decisions. My sister doesn't really know how bad off mom is (both mentally and physically), but she is coming to visit in about a week and will get to have some quality time with mom and develop a better understanding of the situation. In the next few days, I have to gather the strength to call my uncle, Mom's brother, and fill him in on everything. I may need to open a fresh bottle of wine beforehand!
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I so relate to what you say, that you aren't upset with her, but frustrated with answering the same questions over and over. Yesterday I was tearing my hair out as mum constantly got annoyed about minor things and told me how to drive, how to shop, constantly questioning everything I said or did. Trying to remain calm and reassuring can be so stressful and I have to stop myself from "catching" her mood. Wow, there was an item on the news last night about Micky Rooney being the victim of elder abuse from his own family and it's easy to see how people could so easily lose patience.
I want to start a separate thread for those who are dealing with elderly parents, there seems to be no forum that is suitable as people in all stages, during and after treatment have the same problems. Whenever I mention my mother, several others will say they are dealing with the same thing. There is an unaddressed need. I need to find the time as I'm involved in other things at the moment and I don't want to start a thread and not be around to join in the discussion. Maybe in about a month I will start.
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Fangirl,
You are a great daughter. I am a stage IV BC sister, but also took care of my mom with stage IV BC and cellulitis. Her infection was on her legs after years of circulation problems, then on her back when the metal that had held her spine together pushed its way out. Mom just got behind on the infections and once I pushed my way in as caregiver, it was too late. It was so hard, but the one week she was on hospice was so helpful for them to take care of her in our home. It sounds like you have found a great situation and are doing a great job getting all the details figured out. I have a little experience with dementia with other relatives and it is so hard. You are so strong and your mom is so blessed to have you. Hang in there and keep coming here to get the advice and comfort of these great women and men here.
Many hugs to you,
Jennifer
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Mom passed away on Thursday, March 17th. She is at peace now. I'm hurting so much.
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OMG!!! Fangirl. My deepest sympathy to you and your family. Gentle hugs.
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So sorry to hear that. My heart goes out to you, I just can't imagine how that must feel. It's all been so sudden. May all the happy memories shine much brighter in your memory than these last two months.
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I am so sorry for your loss.
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This was all so sudden, I'm so sorry... it's been a difficult road for you. Grieving is hard and long work; please take good and gentle care of yourself.
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Thanks for the support. My emotions are on a rollercoaster. I'm fine one minute and then the grief hits me again. My husband, Sister, and myself were by her side to say goodbye and let her know it was okay to rest now.
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So Sorry for your loss fangirl
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oh fangirl, deepest condolences, you and your family are in my thoughts and prayers. so so very hard
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Thoughts of strength and comfort to you fangirl......
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Fangirl,
Sorry to hear about your mom, I am sure it is very difficult time for you. My mom has been in failing health for about a year and I know it will be very hard on me when that time comes. Sending you lots of love & prayers. NJ
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fangirl,
I know exactly the pain you are feeling and will say that really there is nothing I can say to bring you comfort, but will say that I have good days more often than sad ones now. My dad, 63, in pretty good health, so we all thought, had a a small stroke that led to a diagnosis of mets pancreatic cancer and died within a week on in hospital hospice. My mom, who had benn on hospice for mets bc for almost a year died three days after his burial! This took place in June 2010. I have started mindfulness meditation recently and have found it helps my grief. Allow yourself time to be mad, sad, puzzled, empty, lost...all of it! I have learned that the large void that I know feel is a great testomonial of how they loved me. Some people go through life never experiencing that kind of unconditional love. Sounds like you did. Cherish those things. My heart breaks for you! ((HUGS))
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