I have been taking care of things both medical and otherwise for a friend with a glioblastoma- a terminal brain cancer. I thought it was Alzheimer’s for a few months but an MRI showed an aggressive grade 4 tumor that was taken out as much as was safe, on 2/26. She is currently in assisted living and wants to go home, but will need extensive care. I am honestly exhausted and taking a few days off now that she is in AL. Her main proxy is a professor at a medical school but has no idea how to work the system or make plans happen and I am trying not to intervene, but I did get her into AL as the rehab deadline was close. Working on boundaries but at the same time my heart aches for my friend. ps she is in the same AL that my mother was in for 7 years which is surprisingly difficult for me in terms of visiting and seeing the staff
That sounds so hard. What a good friend you are being. Getting her into AL was so nice.
How do you feel about her wanting to go home? It doesn’t sound like it’s a great idea when she doesn’t have much support.
I know people want things to be normal and want them to go back to where they were. But sometimes it’s not possible and I give you all the support you need no matter how this goes.
glioblastoma is a terrible cancer and so hard for everyone. Tragic
She had less than 6 months to live, a month ago and is already getting worse. I would love her to go home but the person with the purse strings doesn’t want to pay for it (I found a home care team) and is in denial, so also has resisted hospice. I connected this person to every resource I could. It is so frustrating that I had to step back and just focus on friendship. I took my friend out to Whole Foods to shop so she could feel like a normal person 
That’s doubly hard when dealing with a person in denial.
I’m glad you were able to make your friend feel normal.
And are able to step away from an imperfect situation, it’s so difficult
My mom has a walk in shower which is quite large, so the transfer chair fits. If his shower is the size of a tub, it would probably be too large.
With such a short life span, it won’t be long before she will need full care - if you are familiar with any hospice in your area that is live in care. When things go downhill, it might go faster than your friend or the ‘decider’ is prepared for. DH’s aunt had glioblastoma, and she was happy to go into a live-in hospice facility – and she was there a very short time; her husband outlived her by a long time and did sell the house and move into AL at some point. My friend’s husband who had cancer, wanted to be at home, but he was too tall/large for her to really manage at home when he could no longer ambulate; they had a live-in hospice facility not far from her home.
The progression of her cancer will have the difficult decisions ‘happen’.
It seems you will know what options will be evident when her cancer will take her out of AL. Good that she knows all the resources you have shared with her.
What has happened to her home since she moved into AL? Who is taking care of all of that? Is there a plan on when AL is no longer feasible?
I am a trained hospice volunteer and have an end of life doula certificate from UVM. I am extremely frustrated. I accomplish what I can, but have no control in this situation. The cousin is the #1 proxy and P of A and insists my friend is going to live longer. I sent her a list of what I see as priorities including enrolling in hospice and enlisting home care, both of which I have found for her but which she has not yet contacted. I am well aware of the course of glioblastoma and the predicted life expectancy of less than 6 months seems on target since my friend is worse every day.
There are no residential hospices here. Hospice involves an aide 5 days a week, a nurse twice a week (more if needed), a social worker, a chaplain and a volunteer. Closer to the end people enter the hospice house. I did find one hospice house that is more residential, $500/day which is well worth it, but the cousin does not want to spend the money because she thinks my friend is going to live longer.
I made progress educating this cousin that Mass Health and other benefits will kick in, and hospice is free. There is a large amount of money available anyway. The house is worth a lot too. I also educated the cousin that people can actually be on hospice a long time, it is not a death sentence, and people can even stay on meds not related to the hospice diagnosis (she was worried that withdrawing bp meds would mean high blood pressure affecting kidneys, a very long term concern!)
Ten days ago, in frustration, on my own w/out the cousin, I got hospice ordered for my friend, talked with the rehab case manager (who was working with me because she too was frustrated), talked with hospice intake, stopped at the assisted living to talk with admissions there and got requirements, and secured a team for 24/7 care when needed. The cousin did follow up on assisted living but got PT and OT scheduled instead of hospice. Her only contact with the 24/7 team was to say she could not pay for it!
This cousin teaches at a medical school but seems incompetent, unable to get anything done, resistant, in denial, maddening. Clearly I will have to continue trying but taking a few days off to avoid having afib! I will visit my friend as a friend and still hope to have an effect.
That sounds so difficult. Here you are trying your best to navigate through this horrible diagnosis and trying to help. And all you are getting are roadblocks.
You are correct and so caring. So frustrating to try your best and have someone in denial. This person should know what glioblastoma means as far as prognosis and life expectancy. Even though hospice is covered by Medicare.
I suspect that afterwards, this cousin is going to say, I had no idea? I thought I had more time?
From dealing with my mom, the hardest thing is getting to the point that she needed hospice and wasn’t going to get treatment anymore. From my perspective.
Forget the tennis balls. Buy some wheels for the back legs. They can automatically brake. You can get them from Amazon.
Life saver for my mom. PT set it up for her before she left rehab.
Sometimes. My Mom wasn’t able to manage brakes or manage the speed of a rollator, so she has a tennis ball walker. Certainly true that wheels tend to help if appropriate
I’m so very sorry! It sounds like you’ve advocated as much as you can and now it’s up to the cousin.
I hope you will be able to visit and be present for your friend regardless of what the cousin decides. In the end, those decisions are out of your control.
Sending very big hugs. You are an amazing friend!
PS. As a former hospice employee and long time volunteer, I feel your pain when other people are making decisions that make no sense! Unfortunately we can only educate and then let it go.
Going to tai chi!!!
NOT a rollater. It’s just a regular standard walker but instead of tennis balls you can attach wheels which self brake.
We are going up today for a visit and I’m going to look at the shower. My husband talked to his dad yesterday and suggested a shower chair but his dad said with the new grab bar he doesn’t need it. He does need it! I’m going to show my mother-in-law a picture from CVS of a bench. I think they should be about to fit the whole bench in their shower. I’m going to suggest we order it and they can have it on hand when they are ready.
@greenbutton you have also given me some good feedback. I think we need to be proactive but they aren’t my parents.
I dont know what type of shower bench you’re looking at but I’m thinking of it’s from CVS maybe it screams “medical equipment” shower bench. Would they be more open to a “pretty” teak or otherwise shower bench? You can get many shapes and sizes.
We had both a good and productive visit with them yesterday. The big hit was we brought my FIL a coffee shake. He was so happy and finished it in record time.
We looked at the shower and it’s quite large and already has a large tile bench. We saw the grab bar they installed and suggested they add another which they are agreeable to. I think the tile bench might not be the safest option. They don’t think they need a seat. While we were there my sister in law called and she said she has a seat and will bring it down today. The agreement was they will put the seat in the garage and have it available if he wants it. We are hoping he will just let her put it in today. They have two shower heads so we also suggested they get a hand held for one of the shower heads.
We also discovered an aluminum walker hanging in the garage. We pulled it out and my husband fitted it for height. They agreed to have it in the car. My husband put it in so they are ready. It ends up that when my FIL was at his balance PT last week she showed him how to use that style walker and how to go down stairs with it, how to get it in the car. Of course he hadn’t told anyone. He said she didn’t like him using just one hiking pole. Now he will have a walker for both home and going out.
I see lots of changes happening in the near future.
Mil still in a lot of denial. We have camping reservations next month and she told me to not cancel them. There is no way FIL can drive a huge truck with a large toy hauler. Now she thinks that is remotely possible is beyond my comprehension.
Next up will be the conversation about no longer driving. That’s going to be a hard one.
I had a discussion with a friend yesterday. I wasn’t sure where to put this.
She’s 79 and he’s 81. Second marriage, he has 2 kids, she never had children. Neither child is local.
She announced that they have decided to age in place. They are doing things to their house to facilitate that, such as putting in a shower instead of a shower/tub. A few other things.
They went to an elder attorney and have a lady bird deed on the house.
She was telling us that she doesn’t have to do anything more. The kids are going to get the house, they are responsible for cleaning it out. She thinks that one of them might even move into the house.
It took everything I could not to scream. Not really but the discussions my husband and I have had is that we need to be flexible, we need to be open and that we can’t fall into the trap of deciding that doing a little is sufficient.
I wonder how this comes about. Is it the lack of not wanting to make a decision? Is it that one person (the husband in this case) doesn’t want to move? The spouse doesn’t want to rock the boat. Is it denial that things will change? Do you feel young right up until you aren’t?
I really want to make things as easy as can be for my children. That means being open to the idea that I probably won’t be able to age in place forever. That I will have to make decisions that I may not like.
Things may change after one dies and the other decides they don’t want to be in that house by themself. My mother wanted to die in her house, even though it was too much for them and they increasingly needed to hire more help. After she died, my father sold the house and moved first to AL and then to a nursing home. He has outlived her by many, many, years now.
I take it as the husband wanting to provide a home for the wife without denying eventual assets to the kids. (A sweet idea. But it can get complicated. My father has a will that leaves all to wife/grandkids, fine by me. But the simple Life Estate clause to his wife, with no other words or restrictions, is potentially a future timebomb of family strife.)
Agree 100%. I’m already planning to move out of my house and into an apartment within the next few years (I’ll be 69 soon and I’m active). Already told my kids that I fully accept the fact that I may very well eventually need AL and or nursing home.
Of course my kids will inherit, but I don’t want them to have to clean out a ton of junk, even if I were staying in the house.