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Dementia, and Cancer, and Hospice! Oh My!
The last 10 days have been a nightmare. Dad (85 years old, with moderate dementia) fell and split his head open. He was rushed to the ER. We were there for 8 hours or so. That's when we got the horrible news that Dad has brain cancer. I had so many decisions to make so quickly. I decided no brain surgery, no radiation, and no chemo. I took Dad home, and hired 24-hour home health workers. I made the decision to focus only on comfort care and pain management. The next day, we started hospice. Yesterday and today, the pain was so intense we started him on morphine.
Ten days ago, Dad was walking unaided. Now, he uses a walker and still needs a person to help. He can only walk a few steps with the walker. He has no sense of balance. The doctor says he will not recover his balance.
Ten days ago, Dad was living fairly independently in a retirement community, with me going by for 3-4 hours a day. Now, he needs 24-hour nurses there, and still needs me for most of the day.
Ten days ago, Dad was on no pain medication. Now he's taking morphine frequently.
Ten days ago, Dad could get in and out of a chair unaided. Now he needs a lift chair and an aid to help him.
I've tried to stay strong -- for him. In reality, I'm exhausted and overwhelmed. I've had to miss a lot of work, and my job is in jeopardy. I'm single, so I rely on my job -- it's the only income I have.
When Dad was hospitalized, I called my brother to tell him what happened. He lives 12 hours away. When we started hospice, I called him again. He said over and over how glad he was that Dad had me, and that he agreed with all my decisions.
I called him Friday night, and he didn't take my call. He never called me back. I saw him online, and said "Hello," but he never responded. I saw him online several more times, but he never messaged me. I didn't think much about it.
Today, while I was at Dad's, I picked up Dad's phone and called my brother. I wanted to tell him we had started Dad on morphine. He answered immediately. I asked him about his family -- just some quick small talk. I didn't mention the earlier phone call or online message. He said I know you called Friday, but I was at a party and it wasn't convenient to take your call. I said That's no problem. He said, I know you messaged me, but I've been very busy. (He takes a vacation almost every month.) Again, I said No problem. He then said his life is very busy right now, and he just can't deal "with this" right now. He said he knew Dad was in good hands with me, to do whatever I think is best, and that he'd call me "sometime." Then he hung up.
I know I won't hear from him again until I have to call him to tell him that Dad passed. He did this 10 years ago when I did hospice with my mother, who had cancer. I took a 3 month leave of absence from work and moved down to my mom's house -- did 24 hour care myself, because I promised her she could die at home. Mom was calling for him, but he wouldn't come to visit. He said he couldn't handle seeing her "like that." He did show up for the funeral.
I know I shouldn't have expected his help, but somehow I still did. Now, I'm feeling very alone and overwhelmed. I have absolutely no one to turn to. I spend almost every waking hour with Dad, but when I come home to sleep, I get woken up by calls from the caregivers, and call-backs from the emergency hospice nurse. I know with time we will get his pain under control, but until then, I'm a walking zombie.
I considered putting Dad in skilled nursing, but they said with his dementia and uncontrolled pain, he'd still need 24 hour personal aides in addition to the skilled nursing. He's not eligible for medicaid yet.
I feel like I'm running out of options, I'm definitely running out of money. Mostly, I'm running out of energy.
Thanks for listening to me vent. I'm feeling a bit hopeless right now.
I’m sorry you didn’t get the help and emotional support when you needed it
Look into SNFs that have a memory care unit. And the “right place” for your dad may not be local for you; I moved mom in SNF MC that’s 45 mins away, I was not happy with the places nearby
I am sorry for you and for your father. I know several friends who's LO had brain cancer with tumors and they did not last long-even with treatments. So hopefully your father's pain can be addressed quickly.
My mother has no co-morbidities and so her decline has been painfully slow and very taxing as well. My father had a stroke and we lost him quickly. In hindsight I see it as a blessing, although at the time it was painful. My siblings were there for me, as they are now, although they do no hands on care. That falls on me and my husband.
I've said to others that I can be there for them and I extend the same to you. Make me a connection and we can email (even call) and I can support you where your brother won't or can't. Take care Rain Storm!
Take your brother’s words and do exactly that. He’ll call you “sometime”? Super. Don’t call him again, even when your father dies. He can find out on the “sometime” call.
Your father has brain cancer. It won’t be long. Don’t waste another minute on your brother and don’t notify him.
Rain Storm what you have been through in the last 10 days is simply awful. I would image your in shock - such a change in so little time. With the shock you add in your brother's disregard to the situation and that hurts so much. Your disappointed in him. I certainly don't mean to sound rude or cold, but when we put expectations on other people and they don't live up the the expectation, we are upset. It seems as if this is what has happened with your brother. (And that is a life lesson that is very hard to overcome. I'm desperately trying to accept a family rejection myself - and I just can't understand it.)
As cold as it sounds your brother now knows everything because you've included him - communicated with him about the situation. Personally that is where your 'obligation' ends. He can call to check. Distance shouldn't matter at this point - get on a plane, or drive - he is choosing to not involve himself and its upsetting you. Dad needs you now, not your brother. It doesn't mean he doesn't love his dad, it means he doesn't want to 'deal' with it.
Your energy needs to be for you and your dad. Being even more upset with your brother will be an energy suck that you don't have. Again I'm sorry to sound cruel, just honest. This is something that has taken me a long time to figure out. This message board is to help you through this ugly disease. To have online friends whom we can relate with because they understand the situation your going though. Come often, vent, do whatever it is you need to do to survive. We are here for you.
Thanks everyone for all the support. I greatly appreciate it.
I'm not going to give my brother another thought. I will call him (or have someone else call him) when Dad passes. Since Dad made plans for the end-of-life when he was diagnosed with dementia, I won't need to consult my brother on anything. Dad wants no funeral, no memorial service, and wants to be cremated and have his ashes scattered by the cremation company, so he is no burden on us. As the executor of my Dad's will, I can take care of the details (financial and otherwise) by myself.
Thanks again everyone for being here for me. It is appreciated more than you'll ever know.
think of this when you hope your brother changes : )
I’m glad your dad made his wishes known, it makes everything so much easier to do.
I’m sorry that your brother doesn’t have what it takes. A lot of people don’t. M
Please have a talk with the head hospice nurse. Usually when a person starts on morphine, their time here is not long. Your Dad is blessed to have you.
I hope everything works out with your job.
I am so sorry about your Dad. I'm not sure where you live but in our city, we have an amazing Hospice House. They know how to deal with all of these issues and are paid by Medicare. I know 24 hour care is crazy expensive and then to have to manage it is even harder.
I hope you get some resolution for his pain soon and that your boss gets a heart! To burden you with stress about keeping your job at a time like this is ridiculous.
Best to you!
Thanks John'sBabyGirl. Unfortunately, the only local hospice house is only for short stays (5 days or less) to get pain management under control. The trip there and back in an ambulance would be incredibly painful and traumatic for him.
As to worrying about my job, I don't have to worry anymore. They let me go today.
Nine years of perfect attendance and the highest evals didn't matter. I only missed two days of work while Dad was in the hospital, and I arranged for a replacement for both days. They decline to give me a reason why.
So I put a few personal affects into a box and left. Then I went and sat with Dad for 7 hours.. Things have declined rapidly. He is now bedridden, delusional, on morphine and oxygen. He has no idea who I am.
Two weeks ago, he was walking, talking, going out-to-eat with me and on no pain meds. He knew who I was. He had no delusions or hallucinations. Now he's bedridden, can't feed himself, is incontinent, is delusional and is on so much pain medication that he can't see straight. He is still in agonizing pain.
What a difference 14 days can make.
I'm a bit numb right now. What a day.
While it’s tempting to let this go for a bit, you need to apply for unemployment immediately. Most states let you do it online.
If they won’t give a reason and you weren’t under some kind of progressive disciplinary plan, you will get the benefit. Let them fight it if they want.
You certainly have a load of stuff on your plate right now. And I could understand how you would say that "I'll deal with unemployment in a couple days." Let me tell you that can easily turn into a couple of weeks. Especially with how dad is doing right now.
I agree with dayn2nite2 totally. Get the application in and the ball rolling with unemployment right away. It will feel like a pain to do and that you can put it off for a little while ("because I'm not starving or out of money just yet.") but it will save you lots of headaches later if you do in now.
Good luck with dad and best wishes to you, Greg
You take over for the caregivers and pay yourself.
I'm so so sorry about your Dad. I know you think he doesn't hear you or know you but talk to him. Let him know its okay to go. I pray you find Peace in this process and that your Dad finds relief from his pain.
I've just joined the forum because I have some concerns about my own father, who has recently starting showing signs of dementia. But when I read your post, I wanted to reply because you said you were let go, which is unconscionable. It also may be illegal and I wanted to mention that you may be protected by the Family Medical Leave Act (FMLA), which it many cases, covers employees for up to 12 weeks of unpaid leave to care for a sick family member, including a parent. During that period of time, your employer must maintain your group health insurance and your job (or I think a job with similar standing and salary, I'm not sure about that last one). In any event, the FMLA applies to companies employing 50 or more employees and applies to an employee who has been with a company for more than 12 months and has worked at least 1,250 hours during that 12 month period.
I'm so sorry for what you are going through right now, especially not having your brother's support. I can't even imagine how overwhelmed you are. But if your employer qualifies for FMLA, (more than 50 employees), try contacting their Human Resources department and ask them whether giving you your 12 week FMLA leave wouldn't be the better course and remind them they have to give you your job back at the end. If they refuse, contact a lawyer who specializes in FMLA law. Most of them work on contingency I think.
I will keep you in my prayers and hope you are able to get your dad settled.
Thank you for the information. My company is small and is a religious institution. They are not legally required to offer FMLA or COBRA. All employees are "at will" and can be discharged or non-renewed without explanation. That being said however, they choose to offer their version of FMLA to their office employees. It is a generous 8 weeks of PAID leave. I however, am not an office employee. I am a teacher, and we are contracted employees, with very few rights. It is very confusing. I am waiting on a clarification from the human resources department about whether or not I would be eligible for it. They are located in another part of the state, so it isn't like I can just run down there and ask.
However, in the midst of all this craziness with my Dad, I took eight hours to sit at the computer and document everything that has happened recently, have begun the process of going up the chain-of-command with documentation, and what I am requesting. I'm not sure if I'll get results or not. But I'm not going to just lay there and take it. If going through the proper chain-of-command doesn't work, I certainly will contact a lawyer.
There also as another twist to it. I am a person with a disability. This is obvious because I use a rolling walker to ambulate. Nine years ago when I applied for this job, I was very upfront about that, and what accommodations I would need. I was enthusiastically hired. The school willingly provided every accommodation I needed. I have an Americans with Disabilities Accommodation Form in my personnel file. This has been reviewed by my current boss, so he knows it is there and what it says.
Since I was hired, I have been through 5 different bosses (in 9 years.) Four of them thought I was the best thing since sliced bread. This current boss doesn't like me. (I believe I know why, and it has nothing to do with my job performance.) He has been finding fault with everything I do ever since he started here. He has been actively trying to get me to leave for the past two years. However, I have been very careful not to give him grounds to do this. He is very frustrated by this.
However, in a final attempt to get me to leave, he decided that for next year, I must be moved to another classroom. I am to be moved from my completely handicapped accessible classroom that I've had for 9 years to another classroom located in an outbuilding. It is isolated. I have to cross a grassy field -- not easy to do with a walker. It does not have a handicapped accessible restroom nor is there one within a reasonable walking distance. I guess I'm expected to go all day without using the restroom. The ramp is not properly constructed and has not been properly maintained. It has large gaps. It does not meet ADA requirements. I went over there to try to use the ramp, and found I could not get up the ramp at all. My wheels get stuck in the gaps. The fire exit does not have a ramp at all! It lacks every accommodation listed in my ADA file. I expressed my concern to my boss. I was told my concerns where "not important." I was also told I was not allowed to tell anyone (not other teachers or parents) about this move until it was officially announced in August. I know this is because the other teachers and my classroom parents will be outraged and complain. I know also at that point, he will claim it is too late to make any changes to the situation before the school year begins. I really do feel this "change" was made to drive me out. But he has violated my ADA rights in so many ways.
So, I have also documented all of this, and sent it to the appropriate officials.
This is all a lot to handle while Dad is in hospice. But I will persevere.
Thanks for the support.
Your plate isn't overflowing it morphed into a buffet table.
You shouldn't be running out of your money, you say you sold your dad's house- that money should be used first. And since you are providing care get with an elder care lawyer to see about how to handle the whole thing- POAs ,can you be paid as a caregivr , can he be in a medicare bed since not just dementia but an illness etc.
For you, you need a bulldog employer lawyer- I'm not a lawyer but I find it questionable they can call a teacher an ind contractor -- they get the kids, set the hours, the course plans, etc.
And get one that handles ADA complaints too. Removing accommodations when it would be easy to leave them in place. Grrrr.
Don't let your financial future be negatively impacted by giving your Dad care and don't spend your money instead of your Dad's for his care , ESPECIALLY if what you save is split with the brother. Insult to injury.
You have done so much, your father is blessed to have you.