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Assisted Living or Nursing Homes

mdnikki
Posts: 34
Joined: Apr 2010

My mom will begin chemo treatments when she is released from her rehabilitation facility. My sister and I are not comforable with her living alone. She is on oxygen and is only partially mobile using a wheelchair and for small amounts of time a walker.

We will be transporting her to treatment but are unable to be with her 24/7

My question is do assisted living and/or nursing homes take patients currently undergoing chemotherapy. I keep getting different answers each person we speak to.

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

I think it depends on the facility. I know that some do take people on a temporary basis. I think you would just have to call the places in your area and ask. Best of luck in your quest. You might also consider temporary help in her home. Call a local hospital and talk to their social worker. They can probably help with some suggestions. Fay

Barbara53's picture
Barbara53
Posts: 658
Joined: Aug 2009

I'm so sorry that your mother has ended up in such a sad situation. I helped my 79-year-old mother through 6 rounds of chemo for ovarian cancer, and it bought her several months of good time. However, she was quite healthy and vigorous to start with, which is the only way she survived the chemo.

So, I must first ask the purpose of the chemotherapy. Is it intended to be of palliative value, for example to shrink tumors so your mother will be more comfortable? In that case it may be a low-dose cocktail of some kind, which you must must must discuss with your mother's oncologist or his/her nurse. It may not be as traumatic as you think.

It is your mother's decision, but in the event that full-bore go-for-the-cure chemo is the plan, she is going to need much more help than she did before.

An honest discussion of other options is in order, too. One of my mother's friends (age 80) who was diagnosed with lung cancer last year has opted for palliative care only, and she is enjoying her life while it lasts.

A year ago my brothers and I joked that mom was going through chemo so she could spend time in a swanky assisted living facility (NOT what she wants), but that may be turning out to be the case. For older people, chemo is very very debilitating.

mdnikki
Posts: 34
Joined: Apr 2010

Well this is all we know as of now. She has an 8cm mass on her lung...It was diagnosed during an ER visit. My mom never goes to the dr...she refuses so who knows how long this has been growing and she is a smoker.

We have yet to have a PET scan but the bone scan was negative. They will not do a PET scan while she was in the hospital or at the rehab (insurance reasons they say). So we are working to get her released tomorrow to get a PET scan done. Her oncologist says the mass is a new large cell neuroendocrine mass. He says they are very treatable and sometimes cureable. However until the PET scan is done he can't tell if it has spread any further.

The mass is affecting her breathing so we are hoping this will shrink it. She isn't in the best of shape to begin with. Is on 24/7 oxygen, unable to get around on her own without a wheelchair and not strong enough to use a walker unassisted.

She wants to do the chemo but I can't tell if she really wants the treatment or she just wants to go home..she knows she can only get the treatment if released.

As of now she is scheduled to be released tomorrow morning, have the PET scan bright and early and begin chemo in the afternoon. We have no idea what to expect. We are having a hospital bed and bedside commode delivered to her apt today.

Plans have changed almost daily and all this is happening so quickly my sister and I are at a loss for what to expect.

thanks so much for your advice.

Barbara53's picture
Barbara53
Posts: 658
Joined: Aug 2009

In the short run, you can probably get home health nursing services for a few weeks. Those ladies are great to have coming and going, and it takes some of the burden off of family while allowing your Mom some independence. Ask the doctor to order home health services upon discharge from the rehab facility. Medicare should cover it.

The PET uses a chemical that binds to cancer cells, causing them to light up on imaging equipment. It will tell the doctors exactly where the cancer activity is so they will know how best to treat it.

Good luck with the days ahead.

soccerfreaks's picture
soccerfreaks
Posts: 2800
Joined: Sep 2006

Pardon my skepticism, but this doesn't sound quite right. Are you sure you have the facts right?

To begin with, I am surprised that an insurer would insist that PET scans can occur only when a patient is no longer in the hospital. As a two-time cancer survivor, once of the lung, in fact, I can assure you that I had many tests performed while in the hospital, including scans. Does mom's hospital not have a PET scanner?

I am also baffled by the notion that chemotherapy would begin before doctors are sure about the extent of the cancer. This one is completely inexplicable. How, for example, did they determine that mom has cancer, and when they did so, why did they then not more or less make the scan(s) the next step?

If there are cancer survivors in this board who have been provided therapy without at least having CT or PET scans or MRIs to evaluate scope, I would sure like to hear from them.

I am often wrong, but that is how I learn.

Take care,

Joe

mdnikki
Posts: 34
Joined: Apr 2010

Well she did have a biopsy of her lung done when she was in the hospital as well as CT scans. She is now in a rehabilitation center and they stated the insurance company will not pay for her to go out of the facility for a PET scan. Even if we did the transport. They also stated she cannot stay in the rehab during chemo since most likely she will not be getting rehab services PT/OT.

The hospital she was in prior to her move to rehab did not have a PET scan machine..she would need to go to Advanced Radiology which is basically across the street.

She was to be dismissed today to go home so she could get the PET scan and start chemo but last night we got a phone call she has developed pnemonia and will not be released.

Barbara53's picture
Barbara53
Posts: 658
Joined: Aug 2009

Oh, dear, that is not good news. Or maybe it is. According to the books written by hospice nurse Maggie Callahan, pneumonia is common in late stage cancer patients, and it's a restful and painless way to go -- basically sleep a lot and breathe less. Whatever the future holds, right now it seems wise to free up time for bedside sitting.

Are you getting any sleep? Don't forget to take care of yourself. Pursue peace.

mdnikki
Posts: 34
Joined: Apr 2010

At this point I am wondering if we need to get her out of rehab and back in the hospital. Rehab only has a dr on site once a week. I just don't know if she needs more monitoring than what she is getting.

She is in good spirits even though she was counting on coming home today. This roller coaster ride is getting to us. Its just my sister and I that are taking care of her.

Also is pneumonia contagious. I usually take my son to visit her..especially this week he has his prom and I would love to bring him in so she could see him..I always think each moment needs to matter.

Tina Blondek's picture
Tina Blondek
Posts: 1566
Joined: Nov 2009

Hi mdnikki, Welcome to our caregivers family. Sorry you have been having such a rough time of it lately, but that is how this journey with cancer goes. Your mom needs both you and your sister now. You must make her and her care a priority. Not sure of pneumonia being contagious...hmmm....I am thinking it might be. Seeing her grandson going to his prom will most definitely be an uplift for her. First things first, she has to recover from the pneumonia first, then get the pet scan to see what is actually up with the tumor and if it has spread. Concentrate on her recovering first. You have to take this journey on hour at a time, and do expect changes, delays, etc. I would definitely get her back into the hospital now! Let us know how you all make out.
Tina

mdnikki
Posts: 34
Joined: Apr 2010

Thanks Tina. We are waiting to hear back from the social worker/rehabilitation facility to talk to them about moving her back to the hospital. I think this will be upsetting for my mom as rehab seemed a step forward and going back to the hospital is just that..a step back.

I just don't think rehab is equipped to handle her complex needs right now but I don't know that we can just pull her from there and take her to the hospital. I just don't know what she needs having the pneumonia on top of the lung cancer. I hate delaying any chemo treatments its already been a month since the diagnosis and we keep having issues arise pushing back the treatment.

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