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Hello, my dad is 90 and has terminal cancer. He is coming to live with my husband and I in a month. He will be getting some cancer treatments (infusion therapy) here - I have to set that up to be transferred from one care team to a local one tomorrow.
But other than checking in with doctors and the county aging office, I'm kind of brand-new and don't know what else I should be doing. "Grandpa-proofing" the house, I guess?
I have so many worries, in so many areas. I'm trying to stay compartmentalized and not get overwhelmed.
My husband and I work from home and are able to be here for him, but I don't expect that we will be doing anything resembling skilled nursing - he's not at that point right now, but obviously will be sometime down the road.
So it's in-home care, then visiting help, then a facility and/or hospice? Is that the process? How do I start to work through all this?
Thanks so much; sorry to be so clueless.

Welcome to the forum! I'm sorry your dad has terminal cancer, that's a tough pill to swallow, really. I don't blame you for having worries and being nervous, since you don't know what to expect.

What are dad's issues that he'll need help with, exactly? Is he able to get around without a walker, so no mobility issues? Can he shower alone? Does he wear Depends or have incontinence issues? Is there any dementia he suffers from? There are a ton of questions, do you have any answers?

Also, I wonder what sort of side effects he can expect from the cancer treatments? And how his health will decline as the cancer progresses? Those are the questions you need to get answered from his Oncologist so you can prepare accordingly. You don't know what lies ahead, or what needs he has now, or will have in the future.........so how can you prepare?

If dad has funds, you can hire in home help. Medicare will pay for some services, you can check with his secondary insurance to see exactly what is covered. I suggest you do that, too. Medicare covers hospice care 100% and you can get that in home when he's deemed to have 6 months or less to live. Hospice will provide a hospital bed, supplies (like incontinence briefs, chucks, wheelchair, meds, cushions, etc) to him all free of charge and billed to Medicare directly. I'm not sure exactly what facility hospice Medicare covers; some I know ARE covered, but for how long a period of time, I don't know. Another good question to ask when you call dad's secondary Medicare insurance provider.

When and if dad's care becomes too much for you to handle at home, you can place him in Skilled Nursing, and then hospice services can come there to see him. It all depends on how he progresses and what level of care he requires down the road.

Don't ever be sorry or apologize for coming here to the forum to ask questions; that's what we DO! We all come together to help one another through these trials and tribulations of life and share our experience, hope and strength together. I'm sure some others will come along with much better advice than I've given you. My parents were both in Assisted Living and then Memory Care for mom for almost 3 years. Dad did have cancer, but a brain tumor ultimately took his life. I had hospice services come into the AL to care for him during the last few weeks of his life, once the brain tumor had progressed to the point where he only had a few months left to live. Hospice was great; the CNA came in to bathe him, and the RN kept him comfortable with meds; she brought him a hospital bed and lots of other things to keep him comfortable. Same with mom; she was in Memory Care AL when she began the dying process in February, and again, hospice kept her very comfortable for the last week of her life.

I wish you good luck and Godspeed as you go through this difficult process with dad. I also wish him the least pain & suffering imaginable and that the last days/weeks/months of his life are as rich and enjoyable as possible.
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Reply to lealonnie1
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Sharovd Sep 12, 2022
Lealonnie, what a nice and informative response. Thank you for helping us.
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If he is terminal, contact hospice. They are wonderful!
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Reply to KathleenQ
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Be sure you will be able to work from home. There are multiple people here who thought they could get their work done at home, but instead were interrupted 20x a day by their parent.

A lot of people think working from home isn’t really work, and don’t understand when you tell them you can’t help right this second.
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Reply to LoopyLoo
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Or ask the doc to prescribe a occupational therapist to visit the home to make recommendations.
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Between Lealonnie and againx100 you've received very valuable insights.

I only add that at 90, it is very possible your Dad may also begin to decline cognitively, as well as physically -- and sometimes it can happen very rapidly. it can even begin to happen before his cancer gets much worse. He may also become depressed (from his diagnosis, his failing health, the move-in/change in his lifestyle, etc). There is no pill that helps with memory loss or cognitive impairment, but there are medications for depression, mood, agitation, anxiety. Don't hesitate to talk to your Dad about being open to this option *for everyone's sake*. You might want to watch some Teepa Snow videos on YouTube. She's an expert and focuses on positive caregiving and education. Learning about aging and decline and how and why it impacts our LOs will help you recognize the early signs of dementia (like, your LO is not just being stubborn... irrational "stubborness" is often an early sign).

Kudos to you for being so proactive and being humble enought to know that you don't know stuff. I wish you much wisdom, and peace in your heart on this journey!
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Reply to Geaton777
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Google "cancer family caregiver support group"
If you can squeeze in time, you may benefit from attending a support group. Some meet via Zoom.

You'll get information that will included vetted helpers, better resources and those that are not so helpful for your exact needs.

Your dad is very fortunate to have your help.

Wishing you, your husband and dad all the best.
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Reply to MicheleDL
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Thanks for the support!
He has sarcoma of the soft tissue on the skull, which is invading inside, as I understand it. He is receiving Keytruda infusions; has had 3 treatments, with no side effects so far, though we were warned about expecting them.
The infusions, in fact, have lessened the mass. He's amazingly positive and says he expects to live forever (or at least another 5 years). The prognosis was 3 months to 3 years, but I think I need to get more details once I'm more involved in all of this. Until this point I haven't been, as he's been living with his partner across the country.
He will live in a kid's bedroom (she's at college). We are going to redo the bathroom on that floor, which currently is tiny and has a tub that's hard to access for even 20-year-olds. A shower will take its place and there will be updating and grab bars and all that. (These things were necessary already, so we aren't doing anything we weren't planning to do, other than the grab bars). Until that's ready, he'll use our shower, which is a big walk-in.
He seems to be OK. He was a bit weak before these infusions started - did much napping and had stopped doing daily walks with their little dog. But he's resumed the walks. Says he feels great.
While he's mobile, he's fallen a couple times in the last 6 months, from misjudging steps or whatever, so he's certainly not 100%.
I just won't know a lot until I observe him 24-7.
I would love to get someone in, kind of like a safety check that you'd do if you had a new baby. Or someone to give us guidance on what's available around us, or services or whatever. But I don't think there's anything like that where we live. I don't think there's much at all, actually. I called the Area Agency on Aging and they said well, call us back when he's here because we don't work with people who aren't residents. Typical bureaucracy; makes you want to bang your head against a wall.
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Reply to NewinPA
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lealonnie1 Sep 12, 2022
Ok, so call the Area Agency on Aging back when dad is local. Also, you can call on the services of an Occupational Therapist to look over the house and see what needs to be done to keep him safe and cut down the falls, etc. They're very good for that type of thing. You can find one in a Physical Therapy company. Here on AgingCare, if you want help in home, go to the right side of the screen under Find Care & Housing, select Home Care, punch in your zip code, and let the advisor guide you. It's free.

You can Google Keytruda and see what the side effects can be, with or w/o chemo used in conjunction with the infusions.

Just take things one day at a time, right? I hope dad has very few or no side effects from his cancer treatments, and that all works out well for both of you.
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Hi, Our cancer clinic has social workers who will help with all sorts of things. I would see if there is one connected to your hospital's programs. In our case, they asked if we needed help with bills, etc. They were quite concerned about the emotional stresses on the family. You might ask about hospice; they might provide some professional help with medication, comfort, guidance about what to expect, if he has been diagnosed as terminal. Again, your cancer doctor's team may know about this. The county or city aging department would. An occupational therapist is a great idea for accommodating to his adjustment. Will he need a moving bed, a path for a wheelchair, help with the commode? The OT will know these things. When my was very weak and ill, they helped him learn to move safely to the bathroom on his own. I would also consider getting someone in at least once a week to be with him. This will be helpful, and probably necessary, at one point. I think sooner rather than later would be helpful to everyone and not seem like an alarm system when it happens later. I guess I'm saying a pound of preventive learning now can be incredibly valuable later. Good luck. You have a perfect attitude, except too much anxiety, for the adjustment.
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Reply to Moxies
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Welcome! I'm glad you found this forum and are looking for help in getting started. Elder care is not always easy, nor is having someone new living in your house.

Lealonnie is being humble - she gives the best advice so listen closely to what she has told you.

Sorry that your dad has terminal cancer. I feel like that can mean so many things. What type of cancer? Does he have a diagnosis of something like X - Y months to live? Or is it a really slow moving type of cancer (like prostate can sometimes be)? These details will help you figure out how you will need to start your caregiving journey.

I am also curious, like lea, about what condition your dad is currently in? At 90, it would not be unusual to have a host of issues. Is he currently living alone?

If he's pretty independent, do your best to strongly encourage him to remain so as long as possible. In hindsight, one (of many) of my biggest mistakes with moving my parents in with us, was not making them be more of an active part of the household. Me and hubby took on way too much and should have expected them to pitch in as they were able to. For example, I should have had them be responsible for cooking once or twice a week instead of us doing all the cooking and cleaning.

If he's not able to do much at this point, I would bring in some aides from the get go so that you don't take on too much and then later have to make big changes when you get burnt out. Even though you work from home, you are working and having caregiving demands throughout the day will be difficult at best. I have some aides for my mom now and it is a lifesaver. It lets me have guiltfree time with my grandkids and hubby. I asked around for local caregivers which I have a few of and have also added a small agency to add some additional days (we're up to 5 days for 5 hours).

Remember to carve out time for you and hubby. Your relationship is important.

What are the living arrangements? Will you all have privacy or will your bedrooms be next to each other and sharing a bathroom? My mom's room is at the other end of the house and we each have our own bathrooms which has helped make this much more tolerable than it would otherwise be for me.

Financially, please have your dad pay his own way. His money is for his care. Unless you're filthy rich, but otherwise you need to protect your nest age for your own retirement and elder years. I would be careful about doing any additions and having dad pay for it, etc. Some others have posted about how sticky that situation can get so think. out the exact details if you're taking that route.

Are his affairs in order? Hopefully he has a will, living will, POA for financial and healthcare. If not, as long as he is competent, get it taken care of ASAP. I also had my mom either put me and my sister as joint on her accounts or mostly had her make us co-beneficiaries.

When is he moving in??

Best of luck and I look forward to hearing more from you!
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Reply to againx100
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You have the general idea of what needs to be done. If you are not skilled at giving infusions, have the care team show you what to do. Your father may be eligible for in-home care on an ongoing basis through Medicare/Medicaid. Also discuss your father's needs with his doctor. Will he have the same doctors, or does he need to get new doctors? Get connected with a local social worker to discuss his (and your) options. There are also programs to pay family caregivers. Much depends on his finances. If his mind is still good, you won't have to do much to make the home safe and accessible for him, other than making sure that there are clear pathways for him to move in and that things are accessible for him. Will he be in a wheel chair? Is he able to stand while in a shower? If not, you can purchase a shower seat. Do you have a walk-in shower for him? If he is still capable of signing legal papers, make sure that all of his paperwork is in order. He needs to set up powers of attorney for medical and financial matters, have a living will with his advance medical directives and have a will, if he has assets. You and your husband also need to be on file with Medicare and Social Security to be able to speak to them on his behalf. This can be done with a phone call with him sitting by your side. Most financial institutions also have their own POA forms. If he is willing, it may be a good time to take over his financial matters. Make sure all statements and bills are sent to your address, or better still, set up online accounts as much as possible. You'll also have to close out any accounts that are associated with his former residence (utility bills, transfer the telephone, etc., property tax bills if he had a house, etc.). Have the Post Office at his old address forward all of his mail to your address. I think you can do this from any Post Office and maybe even online. All the best to you.
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