Preparing for the inevitable future.

blake.swensen

My darling bride just turned 60 and has had a diagnosis for two years. Looking back she probably had symptoms in the past up to 5 years ago. We're still doing very well at home, and were able to do a lot of things, but I need to start preparing for the eventual time when she needs more help.

My question is about what I should be doing now to prepare for her In-Home Care or her care in a facility. We don't have a lot of money, and I know I couldn't pay for it out of pocket. So what things should I be doing right now to prepare for this inevitability.

persevere

You’re going to get a whole lot of good advice Blake. Everyone here has done it all. Here’s a few thoughts. Get your legal stuff in order like trusts and wills and get durable power of attorney over your wife. Do this soon. Get the book the 36 hour day so you know what you’re facing. Be aware of home care options like care.com or agencies like home instead. Tuck away in your head that you will want to bring hospice in as soon as you feel it necessary. They are a great resource and it’s not just for people who have a short time to live. Also, word of mouth to friends that you are looking for help. People know people. As for facilities, it doesn’t hurt to visit and tour them so you understand what they are. Financially the only assistance you might get is from Medicaid if you qualify. Talk to an elder law attorney about what you can do now to qualify in the future. And if I’m correct, the only thing Medicaid would pay for is a nursing home. Not memory care. Lastly, you have to just take this one day at a time. There’s really nothing you can do at this point to prepare for these things other than be aware.

annie51

I agree that the book 36 Hour Day is a great place to start. Your Area Agency on Aging may be able to help with resources for you. I wish I had contacted them sooner. Also begin to look at Adult Day Care programs in your area. It’s another option to in-home care before your wife may need more personal care.

Definitely talk to an Elder Law attorney to get your documents in order but also to find out about Medicaid. Depending on your state, sometimes there are things you can do to help you qualify even if you think you may not. It’s always worth a try. Some programs, specifically the Medicaid Waiver Program or HCBS (Home and Community Based Sevices) help pay for so many hours a week of at home care, day care programs or a portion of a memory care facility.

It’s true what @persevere said about word of mouth. So many people are going through this with a spouse, partner, parent and they will have local knowledge to share.

It’s good to prepare for the future and I applaud you for it. I kept a notebook with any little tip or website, logged the calls I made, etc. But also remember to focus on enjoying your time with your bride as much as you can now. Travel if you can if that’s what you like. Spend quality time with her as much as possible, doing the things you enjoy before those things go away. I made some wonderful memories with my DH in the two years after his diagnosis.
And keep coming back here for advice or just to vent. This is a WONDERFUL group and I would not have made it through my journey without them.

blacksparky

I agree with@persevere with all the things that need to be done. Take it one step at a time and try not to get overwhelmed. My DW was diagnosed a little over 3 years with EOAD at 53 but showing signs probably 4-6 years before diagnosed. She was probably stage 4 at diagnoses but over the past year or so she is now at stage 6. I thought I could keep her at home forever but I now realize that she can get better care from a facility than what I can give her. I haven’t got a solid 6-8 hour sleep in almost a year now. I’m tired all the time and struggle to watch her and also cook, clean, wash clothes, maintain house, help her shower, dress and toileting. I am actively searching facilities that I can afford along with her Medi-Cal helping. If you can try to get her on Medicaid in your state. Reach out anytime on this site. There are very well informed people who have been in your shoes. I’m not sure I could have made it this far without this site.

jgreen

Dear @blake.swensen

Welcome and glad you found us. You’ve received terrific advice from @persevere @annie51 and @blacksparky

The one thing I would like to add to the discussion is to talk with Elder Care attorney about social security disability if your DW qualifies. This is a truly expensive disease and any additional income will come in handy for you.

Keep us posted. We care. 💝

persevere

https://alzconnected.org/discussion/comment/275286#Comment_275286

Blacksparky, have you tried bringing any help to your home and/or hospice? Also, if she’s not sleeping at night consider asking your dr for temazepam for her.

blake.swensen

Thanks for all the kind advice. We have done all of the paperwork and have a DPOW and she had GREAT long term disability insurance from her former workplace that augments her SSD until she's 65 when her pension starts. So,.we have done all that. What I was trying to understand with my question is about planning for the next stage(s). Is in home care better, for example, than a home. What are you spending for either, and did put money away or use some other program to provide care? Does anyone have any Oregon specific tips or directions?

annie51

@blake.swensen

It’s difficult to say which is better, but in my I opinion, most caregivers will try in-home care first, or some adult daycare hours, or both. All of these provide help for you when you need some time for yourself to get things done or to just give you a break. To me that’s the best first step. Placement in a care home or a memory care facility usually is in the later stages, and at the point where caregiving becomes too overwhelming, or there are severe safety concerns, wandering risks, etc. In home care is certainly cheaper and you can start with a few hours a week, then move up as needed.

This link may provide some information specific to your state as to resources to help with costs.

https://www.oregon.gov/odhs/providers-partners/community-services-supports/Pages/adrc.aspx

I hope this helps.

Timmyd

https://alzconnected.org/discussion/comment/275495#Comment_275495

For in home care, I believe the two big options are either private pay, or using an agency. There is a lot written on pros and cons of each. My belief is that if you can find the right private pay caregiver, you will get a better experience for less cost. However, depending upon your specific circumstances (location, hours and such) it can be hard to find the right private pay care giver. I have been lucky and found a good private pay caregiver who I use for about 20 hours a week. It costs me about $25/hour, almost all of which goes to the care giver. A little bit goes toward payroll taxes and the payroll service company.

My goal has always been to care for DW in our home as long as possible. I expect as this progresses, I may have to bring in more skilled help for more hours. I also expect that for the last year(s), the cost of in home care can meet or exceed that of SNF. Also, I am not committed to any specific plan at this point. I have goals for how I would like this to play out, but I understand things may progress such that my goals are unrealistic and I will need to change my expectations.

annie51

https://alzconnected.org/discussion/comment/275503#Comment_275503

@Timmyd is right that a private pay is cheaper and probably better if you can find someone. I ended up using an agency, and while I was happy with the people they sent, it was costing $45 an hour and the caregiver was only getting $25 I think, which I thought was not fair. This was partly because I was only asking for 4 hours a week at that time - it would be cheaper per hour if I had committed to more. I was in the process of trying to find alternatives when things turned and I had to consider MC.

H1235

You might want to contact your local commission on aging. They can tell you what services are available in your area. I will just tack on with the others that have suggested you see an elder law attorney. They can help with information about Medicaid, if you would qualify, what it would cover and if there is anything you can to now to protect your money.keep in mind that facilities can have a waiting list to get in. Once you have talked with a lawyer and have a better idea of what you and afford or what will be covered, you might want to take a look at what is available. If you wait til a serious fall and a hospital stay you will probably be a bit frazzled. Having some ideas before may save you some headache. At some point it may be worth while to get her on a waiting list.