A Brain Tumor & Dementia!

TN Lee

My first post & it will be a lengthy back story. Sorry but I am about to stroke out. My wonderful step father of 52 years passed in March of 2023 & then my Dad passed November 2023. In Jan. 2023 found out my Mother had a very large meningioma brain tumor. Only found because she would have what I call absence seizures. She would just go blank for 60-90 seconds & when she "came back" & she would not know where she was or what happened. I have noticed her mental decline for a decade…but, she can't be diagnosed with dementia because of the tumor even though it is not against the memory part of the brain. The tumor has caused Parkinsons "Syndrome" where she shakes like a leaf. At any rate she seemed ok to live alone & was for a while as she had a friend stay with her for several months while her house was being built (Godsent) as I worked out of town 3-4 days a week. After her friend moved out she still wanted to stay in her home & she thought she could until she fell & cracked her head open & I said no more & moved her in with my husband & I. I promised her I would not put her in a home (even though she put my grandmother who also had dementia in a home) & I fully intended to keep that promise until 4 am this morning. I got up to go to her house & finish some things before it's put on the market. When I went out my bedroom door all lights were on in the house & she had gone through every single closet, every drawer & anything I didn't have locked up. She had thrown everything on the floor in every room. Somehow she managed to move a 90 lb persian rug from one side of a spare room to the other. She is 5'6" 124 lbs!! She just wanted to get into that closet. Needless to say I was not happy & neither was my husband who is very good with her. She was very angry but would not say why. I am just exhausted trying to keep up with her, her house & Dr appts. while my house falls by the wayside. I retired to care for her 8 months before I planned to & she retired at 50 to travel the world & is now 86. My husband is worried that she will give me a stroke. She does not understand anymore that people need to respect boundries & the fact that others need to sleep. I am so tired that I heard none of this going on & my husband refused to wake me because he knows. There is a reason I lock my bedroom door at night & when I'm gone. This was not the first episode & won't be the last but it was the worst! So my question is———

AM I WRONG TO BREAK MY PROMISE?

SusanB-dil

NO. you are not wrong.

Welcome to 'here', but sorry for the reason. That is a lot to deal with. Is she on any meds for agitation? That could help dial all this back considerably, and without making her 'zombied'.

Also do keep in mind - it is not you who would be putting her in a facility. It is this awful disease!

((hugs))

April23

I honestly believe that our LO’s would never ask to live with us if they were in their right minds. They don’t understand their condition or the care that is required. My LO currently is my dad (who is in an RCF) but I have already told my mom (who is healthy currently) that 24/7 care is not a service I will provide. Our health, marriages, children, jobs, etc. are important also and we are still going to need them all when our LO’s pass away.

What if that 90 lb rug had fallen on her? What if she had fallen, cut herself, etc.? She will not respect your boundaries or your need for rest because she no longer has that capacity.

You have done your best but you are not obligated to do what is essentially impossible as the disease progresses regardless of any promise made.

H1235

Welcome. No! There is often an assumption that living with family is always what is best for our loved ones with dementia. This was probably how you felt when you made that promise. The home setting has too many distractions for her and probably not enough oversight for her(no judgement, you can’t watch her 24/7). A facility would also offer her the opportunity to make friends her age. This is all on top of the stress it’s causing you. What do you think she would think about all of this if her pre dementia self could look at what is happening. I suspect she would tell you it’s time for a facility. She would understand. I will second that medication may help some, but it can take time to find the right medication and dose. If you have not looked into facilities you should know that some may have a waiting list to get in. If you are even thinking about it, it might be good to get on a list soon.

Quilting brings calm

No you are not wrong. A facility has a staff of people 24/7. People who work their shift, go home, rest, enjoy their off hours and come back the best day refreshed. A staff who make sure she’s not deconstructing her room, etc.

You have to put the oxygen mask on yourself first. What would happen to her if you do have a stroke or other illness? How’s your husband going to do trying to take care of two people. This disease is going to take her no matter what what you do. Don’t let it take your health, your marriage, your sanity, your own ‘golden years’ too.

You will still be her daughter. You will still be her advocate at the facility. Still handling her finances and her outside needs - clothing, other supplies, possible doctor visits, etc.

TN Lee

https://alzconnected.org/discussion/comment/269407#Comment_269407

Thank You!

TN Lee

Thank You!

TN Lee

Thank You!

TN Lee

No drugs for agitation but a host of others for seizures, memory & the shaking. I will be speaking to her neuro about that though. Thanks!

harshedbuzz

@TN Lee

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

You have already gotten some excellent advice. Unless your mom has the assets or a robust LTC policy to fund a team of 24/7 caregivers in her home, it was inappropriate to attempt to extract such a promise. Alas, she made a wish when she needed a plan.

The thing is, in the later stages of dementia when a PWD needs 24/7 supervision and assistance with ADLs- they need a care team. A well-chosen facility can provide that, or you can turn your own home into a single-bed-nursing home. Either way, the lifestyle she is trying to preserve is unobtainable. One advantage to a MCF is that it would allow you to be the DD rather than an exasperated caregiver.

You might be able to make care in your home possible by hiring caregivers with the money from the sale of her home. Medication might be helpful in dialing back the emotions that drive the behaviors. We found a geriatric psychiatrist (the specialist for psychoactive meds) to be most qualified to manage this for dad; his neurologist wasn't as proactive. Your situation may be different because of the tumor, but it is a question to ask.

I don't know how long ago your grandmother was in a care facility; things may be different now. Many MCF are quite nice with dementia-informed design and programming to help the residents be safe and feel comfortable. Such places can offer socialization and activities to entertain. One caveat is that a MCF may require a PWD to be ambulatory and self-feeding on admission. A fall, stroke or progression of her tumor could take the MC option off the table leaving only a SNF which would likely be more expensive and offer less in the way of activities.

TL;DR. It's not about breaking a promise, it's about how to keep your mom safe in a way that's best for everyone.

HB

samremyva

Wow! I am feeling this to the bone. I have 2 parents that I am caring for, and my mom, who was driving and playing cards with her friends in August, has now progressed to nearly being someone who can't stay alone for even an hour. I had to stay with my parents the first week in September due to my dad hurting his back and having to sleep in his recliner. It's motorized and if he's sleepy, or is confused at all, he can't operate it, so I slept on the couch. About the time when I thought I could go back home, she had a terrible 8 week long bout of sciatica. I had to help with every aspect of her existence and then she had to have a mastectomy and by the time she recovered from the surgery, it was Christmas and her mental decline was catastrophic.. So I have been here since September 1. Sold their car.. I do all the cooking, and I have to sleep here every night due to my dad needing help during the night toileting. Mom is now combative, screams at the slightest thought that she is being contradicted, is always right and her memory is "fine" and I can't be trusted... She has tried to microwave metal a couple of times, and before I moved in she had already burned up 3 tea kettles in a year. (We chalked up the first couple to her being distracted.. now we know it was the beginning).

The part that I really connected to in your post was when you said your grandmother was in a facility and your mom was traveling.. My mom was the same. She was working at first, but then retired and they traveled. Well, my husband retired last year and we haven't been anywhere in more that 2 years because my dad fell and had to have surgery 3 days before our last scheduled vaca.. The condo sat empty for the entire week as I couldn't even give it away.. And we're afraid by the time we can enjoy our retirement, we/I won't be healthy enough to go anywhere.. It's definitely a pickle. I say no.. you need to look for a place for her and don't feel guilty. We have a plan to do that within the next 6-8 months because this schedule isn't sustainable for me.. I am exhausted.. I know you are, too.

H1235

https://alzconnected.org/discussion/comment/269629#Comment_269629

Some facilities can have a waiting list to get in. Just in case you haven’t discovered this already.

terei

Take the advise you would give a friend. Don’t worry about any ‘promises’ extracted from you. More than 30% of caregivers die before their LO..probably a lot to do with the effects of stress. Find a good facility and make a plan to get her moved where she can have a team that is giving her attention 24/7 before you DO have a stroke.

You may be surprised to find that your mom does just fine with more socialization and activities that you cant provide. Try to get a facility that has a visiting geriatric doctor, etc so you are not running around to doctor appointments constantly. Do NOT involve her in the planning or timing of the move. Make a plan and implement it. You will find many postings describing how the LO can be delivered to the MC to have ‘lunch’ and then escorted by staff. At that point, if she asks, ‘the doctor says you have to stay until you are better’. Good luck

kblau

I’ll just echo ‘it’s no longer safe for your mother to NOT be in a home.’