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Topic: How to help my neighbor with vision problems

Forum: Caring for Someone with Breast cancer —

A place to share your struggles and concerns about supporting and caring for a person you love diagnosed with breast cancer with others who understand.

Posted on: Jan 25, 2016 08:38PM

Mominator wrote:

My neighbor fought breast cancer three years ago. She had a 5.7 cm tumor lumpectomy, 12 positive nodes, chemo, and radiation. Then was NED. This past August she had lost a lot of weight, due to her "new medicine" which was for her bones. She just spent two weeks in the hospital because of seizures. She's now having chemo for her brain and spinal column.

She's a very private person. She never really mentioned her stages or even what type of breast cancer she has. This was to protect her children, who never knew she had cancer. She wore a wig all through chemo. Her six children are now ages 8 to 14.

She's home now, and our PTA has organized a Meal Train for the family.

She says everything is dark right now, but her doctors are optimistic. She thinks the darkness is a side effect of the chemo. She can't read the numbers on the microwave, or the numbers or letters on her phone. I want to help her. I've been researching visual aids that might help her. Does anyone have any recommendations for those, or anything else that could help her?

Mominator, BRCA2+, STK-11 VUS. My Mom dx DCIS age 62, ILC stage IIIA age 79; Mom passed 2/28/18. My Grandmother died of ovarian cancer age 48. Friend to Lori M, passed 5/25/16. Surgery 11/10/2015 Prophylactic mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/18/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/29/2017 Reconstruction (left): Silicone implant
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Jan 25, 2016 09:09PM MusicLover wrote:

I have seen those large phones with the very big numbers and there is also a magnifying glass on a stand but that is for more detailed work I think. I wonder if she should carry a flashlight to help illuminate things that she is having difficulty seeing??? I'm sure that other people will have some good ideas for you.

As per PET scan, 3 or 4 nodules in the right breast, 2 of which were actually in the middle of my chest, the other 2 were side by side in the breast. Also DCIS in the left breast. Dx 9/23/2013, IDC, Right, 2cm, Stage IV, Grade 2, 1/0 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 10/9/2013 Femara (letrozole)
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Jan 26, 2016 08:20AM doxie wrote:

Has she seen an ophthalmologist? Preferably one who has experience with cancer patients? Not sure how you could suggest this if not.

In the meantime a hand held magnifying glass might help. Also reading glasses with high magnification.

Dx 8/2011, IDC, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 9/2/2011 Lumpectomy: Right Hormonal Therapy Aromasin (exemestane) Radiation Therapy Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Feb 13, 2016 10:14PM Mominator wrote:

Thank you for your suggestions.

She was hospitalized again. This time when she came home she had no vision at all, completely black. We are rotating caregivers so that she is never alone. My turn was Wednesday, and she slept through my stay. She is using the downstairs guest bedroom/bathroom suite (originally for her MIL), and her husband has a baby monitor set up so he can check on her.

Mominator, BRCA2+, STK-11 VUS. My Mom dx DCIS age 62, ILC stage IIIA age 79; Mom passed 2/28/18. My Grandmother died of ovarian cancer age 48. Friend to Lori M, passed 5/25/16. Surgery 11/10/2015 Prophylactic mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/18/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/29/2017 Reconstruction (left): Silicone implant
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Feb 13, 2016 10:44PM - edited Feb 14, 2016 03:36PM by besa

It has been quite a number of years but a close family member who lost sight liked to use a non-for-profit audio service called InTouch Networks. I think the name has been changed and it is now called Gatewave. http://gatewave.org/ This operates around New York City so I don't know if your neighbor is within their service area. Evidently there are other organizations that offer similar services in other localities. They offer "... verbatim readings from magazines, newspapers and the web, spoken by skilled human voices, never computers. We also find and create special content specifically to help listeners live a full life with vision loss."

There are also helpful devices - for example talking watches and books on tape, etc. (see below)

http://shop.lighthouseguild.org/

http://www.clb.org/

It has been a while since I have looked into this so things have probably changed. I don't know which resources currently offer the best options but there is a lot out there.

Dx 2007, IDC, 2cm, Stage IIA, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Feb 13, 2016 10:46PM ShetlandPony wrote:

How wonderful that she and her family have such a caring neighbor. Her family should ask the social worker at the hospital to share local resources for the blind. Or you can do some internet searching. Key words visually impaired, blind, independent living. There are so many clever strategies and devices that can help, you will be amazed. Mobility training, talking clocks and computers, etc. Some of the service organizations might be able to send someone who is visually impaired and has good ways of coping, to talk with and/or teach a newbie. If you want to tell me any particular needs, I will try to make suggestions, and I can consult my friend who is an expert. In the meantime, of course make sure the paths are clear and don't move anything of hers. If she is a reader, get audio books.

New Jersey Foundation for the Blind

http://www.njffb.org/


2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Feb 14, 2016 07:16AM Mominator wrote:

Besa, thank you for the info. I will see if we are in their service area or have local branches.

ShetlandPony, One of her biggest needs is to get the schedules available to Lori. There's the family schedule of her 6 children and all their activities and doctor's appointments and who is driving them. There's also Lori's schedule of her doctor's appointments, chemo treatments, and home nurse, OT, etc. visits.

Another helper and I have discussed with Lori moving the family schedule the Google calendar, with the plan of finding a way for Google app or the computer to read it to Lori. Lori said her medical calendar must be accessible to the staff that come to the house. Maybe we can do Google with her medical calendar, and print it out for the visitors to use.

Thank you,

Mominator

Mominator, BRCA2+, STK-11 VUS. My Mom dx DCIS age 62, ILC stage IIIA age 79; Mom passed 2/28/18. My Grandmother died of ovarian cancer age 48. Friend to Lori M, passed 5/25/16. Surgery 11/10/2015 Prophylactic mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/18/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/29/2017 Reconstruction (left): Silicone implant
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Feb 25, 2016 03:34PM ShetlandPony wrote:

Regarding schedules, my friend says, "I would suggest Apple products. They are the most accessible. I personally prefer the iPhone. I use it every day all the time for scheduling. You can dictate into Siri and she will take the dictation and create the schedule. People could look at the phone as well. There should be training available [at the local center for the blind]."

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Mar 19, 2016 11:51AM - edited Mar 19, 2016 11:54PM by Mominator

Lori was put on hospice yesterday. She's on anti-seizure medication and very drowsy. 😢

She's completely blind, losing weight, and very weak.

Another friend and I visited her today. She's having trouble speaking so she uses signs for what she wants. Sometimes she doesn't know or can't tell us what she wants. Sometimes she's confused. Sometimes she says random things.

It's heartbreaking.

Mominator, BRCA2+, STK-11 VUS. My Mom dx DCIS age 62, ILC stage IIIA age 79; Mom passed 2/28/18. My Grandmother died of ovarian cancer age 48. Friend to Lori M, passed 5/25/16. Surgery 11/10/2015 Prophylactic mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/18/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/29/2017 Reconstruction (left): Silicone implant
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Mar 20, 2016 01:23AM ShetlandPony wrote:

I'm so sorry she is not doing well. Horrid disease.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Mar 22, 2016 02:49PM Mominator wrote:

Correction: Lori is not on hospice.

Lori had a doctor's appointment last week and the treatment has failed. There were no more treatment options left. Hospice came on Friday to speak with the husband, Lori and her siblings. Apparently husband wants a second opinion. He has not signed her on to hospice, but she is not getting any more treatments.

There was a home health care agency that has been dismissed. Another helper/agency has been dismissed. All I know is "there were words."

Friends and neighbors (such as myself) are staying with Lori in the morning so the husband can go to work for a few hours. He's the owner of a small business. Then he comes home around mid-day. Another friend and I were with her this morning. Lori was already up and siting in a chair when he left for work. She slept most of the time, woke a few times, had a few sips of water, and then back to sleep. She was then moved back to bed. She sometimes gets too warm or too cold, and she likes to have her feet out of the covers, but she does not seem to be in any pain.

I'm not sure what is going on. Lori is in no position to make any decisions. Husband says things like "yes, she seems better today" or "she ate more today," but doesn't talk about anything else.

Mominator, BRCA2+, STK-11 VUS. My Mom dx DCIS age 62, ILC stage IIIA age 79; Mom passed 2/28/18. My Grandmother died of ovarian cancer age 48. Friend to Lori M, passed 5/25/16. Surgery 11/10/2015 Prophylactic mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/18/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/29/2017 Reconstruction (left): Silicone implant
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Mar 22, 2016 03:55PM ShetlandPony wrote:

This is a difficult position for you to be in. I think the fact that you are helping gives you some right to speak about what is happening. It sounds like her husband (understandably) does not want to give up, and he feels like calling in hospice would be giving up. But he may be denying his wife and family much help and comfort. I hope someone can tell him that sometimes people get better and go off hospice. Maybe that would help him consider it. If you want more input from people with experience in such situations, you might start a thread with a title that reflects the current situation. You all are true friends and neighbors.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Mar 25, 2016 08:05AM Mominator wrote:

Thanks Shetland for those suggestions.

I was with Lori Wednesday morning. She was sitting in a chair when I arrived, having just finished morning routine: bathroom, breakfast (don't know how much), medicine, and changed into day clothes. Husband talked to her a little bit and then asked if she wanted to take a nap. He got her into bed and scooted her up towards the pillow. That's when she gasped in pain.

Husband took me aside before he left and said "if anything happens, call me, not 911 or anyone else. We want her to stay home. Of course, we're praying for a miracle." I asked, "so is she getting services from hospice now?" He answered, "well, I haven't finished filling out the paperwork yet."

She settled in bed. I read to her all the beautiful cards and artwork done by her kids posted on the wall. I gave her her wooden cross and she slept the rest of the morning. Every so often she would stir because she was too hot or too cold or to roll over or needed a pillow adjusted.

I'm scheduled to be with Lori on Tuesday. I'll ask again, gently, about hospice then and mention your suggestions. At this rate, she may pass before he finishes (or starts) filling out the paperwork.


Mominator, BRCA2+, STK-11 VUS. My Mom dx DCIS age 62, ILC stage IIIA age 79; Mom passed 2/28/18. My Grandmother died of ovarian cancer age 48. Friend to Lori M, passed 5/25/16. Surgery 11/10/2015 Prophylactic mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/18/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/29/2017 Reconstruction (left): Silicone implant
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Apr 4, 2016 10:36AM Mominator wrote:

Hubby didn't have me stay with Lori last Tuesday as it was spring break and the children (ages 9 to 15) were home with her.

I will be there tomorrow. I hope to talk with her if she's awake, she if there's anything she wants or needs.

Mominator, BRCA2+, STK-11 VUS. My Mom dx DCIS age 62, ILC stage IIIA age 79; Mom passed 2/28/18. My Grandmother died of ovarian cancer age 48. Friend to Lori M, passed 5/25/16. Surgery 11/10/2015 Prophylactic mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/18/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/29/2017 Reconstruction (left): Silicone implant
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Apr 5, 2016 08:43PM Mominator wrote:

Lori's Husband officially filled out the paperwork yesterday to start hospice. Husband told me an aide was coming, and he wanted the aide to give Lori a shower.

Today was a big day.

The hospice nurse came for the first time during my time with Lori. Nurse checked vitals and pain level. Lori was not able to communicate much to the nurse. Nurse gave me some phone numbers and instructions. I made copious notes for Husband.

Health aide came as nurse was leaving. Also her first time with Lori. I told her Husband's instructions. She asked Lori if she wanted a shower. No, she wanted to stay in her chair (recliner). Aide told me we must follow Lori's wishes. We gave her a sponge bath in her recliner, using towels to keep Lori warm. We got her into fresh clothes and also used the commode. Lori was exhausted by the time we finished the sponge bath. Aide gave me more instructions including a shopping list, a list of supplies to request from the nurse, and advice on what services are available. Again, I made copious notes for Husband.

Also the high school guidance called to check in on the family. I know her because my daughter has the same guidance counselor. Our girls are BFF, although they hardly see each other now because they don't have any classes together. At least they have the bus ride home together.

Well, ShetlandPony, Husband arrived home after the aide left. I gave him all the notes. He seemed in the mood to talk a bit, and I took your advice. I explained all the services that were available through hospice, including social worker and chaplain. I told him my experiences with hospice, and when we told the children that our beloved Nana was dying. I asked what his children knew, as I only have said to my children that Lori "was very sick," since our daughters are so close. He asked that we leave it at that. He did say he was very interested in working with the social worker and chaplain.

I told him that as one of my final gifts to Lori, I would play flute at her funeral, if he wished.

The hospital bed and other equipment were being moved in as I was leaving.

I am so relieved now that these services are coming into place.

I'm on again tomorrow.

Mominator, BRCA2+, STK-11 VUS. My Mom dx DCIS age 62, ILC stage IIIA age 79; Mom passed 2/28/18. My Grandmother died of ovarian cancer age 48. Friend to Lori M, passed 5/25/16. Surgery 11/10/2015 Prophylactic mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/18/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 6/29/2017 Reconstruction (left): Silicone implant

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