Best Housing Options Moving Forward After Diagnosis

Pietas61

Hello, I am new and this is my first post. My wife, the love of my life, was diagnosed with early onset 2 days ago in Quito Ecuador. We are retired, me 62/she 56 bilingual hispanic, from Alaska to the coast of Ecuador. We lived the dream for almost 2 years on the beach which is really awesome. I plan on moving back to USA within the next 4-5 months to try Lecanemab for her. (it is 60k a year here in Ecuador. Ins. covers in USA). I will not be returning to our cold dark home State of AK accept to visit children as long as other options exist. This is all new to me. The best housing options for her long term care are a bit daunting. I am open to WA (Seattle are as my son and 2 grandchildren live in Buckley), UT, NV (Las Vegas or Henderson), TX (San Antonio to San Marcos), AZ (Phoenix area) FL not sure, but want some warm weather & sunshine. My question is for those of you who have been there or are there. What housing options should I look at? What housing options would be a bad choice? I am looking at smaller foot print housing. 2 bed 1-2 bath. Should I get a single story townhouse or condominium which I prefer and hire part time help later or will I regret that when this disease really progresses? Is a CCRC contract type of independent living situation a smart option? My wife is the type of person who really loves her home space above all else in her life. She is sweet, kind, humble and most all who meet her like her so having support & social activities for her with others in this situation in the interim would be important to me. I want to make the choice of what is best for her not me. God doesn't give us more than we can handle. I can do this.

Quilting brings calm

You are young, and won’t need continuing care yourself for quite some time ( presumably). I would suggest that you BUY a one story condo in an over 55 community.

I would suggest that you research institutional ( facility ) Medicaid eligibility rules in each of the states you mention - and be sure to research community spouse rules. You don’t mention your finances, and I’m not suggesting you would need Medicaid now. However later it might be very important to be in a state that allows the community spouse( you) to retain as many assets as possible for yourself if you need to place your wife in a Medicaid facility. Such as your house, a car, retirement funds and income.

others will comment today or tomorrow. People who are currently dealing with home health or assisted living for their spouse.

welcome to the forum. It is not too early for you to be here, even if you think many people here are farther along the journey. Review several pages of threads in all three forums ( general caregiver, spouse, parent) for ideas and support.

M1

Make the housing choice and location choice based on what would be best for you. That may seem counterintuitive, but in all honesty it's not going to matter to her in the long run. The advantage of a ccrc might be that she can eventually go to AL or MC while you stain independent living.

Rocky2

Welcome to the forum, but sorry for the reason. In my experience you will find a lot of understanding, support and good advise form the members here.

My DW and I are in our mid 60s. She was diagnosed with EOAD in 2019, is now in early stage 6 and in memory care. I too would encourage you to find a location that considers both of your needs as well as provides for affordable and good care for your DW.

I know you have a lot on your plate right now. Be sure to see an CELA and get you legal documents such as Wills or Trusts, Financial and Medical POAs, etc. in place if you have not already done so. Also work with your medical network to get Medical POA and HIPA documents on record so you can assist with medical decisions going forward. Early planning and action can avoid much difficulty in the future.

Again, welcome to the community.

Tom

Larrytherunner

Pietas, we have a lot in in common. I am also a retired American living overseas. I retired 14 years ago from the Dept of Veterans Affairs and immediately moved to Ghana, where I met my lovely wife and now have two daughters, age 12 and 7, and a step daughter. I live on top of a hill overlooking the Atlantic Ocean and I love it here. Also my social security and retirement go a lot further here. I would never be able to afford this kind of life in the states.

I am sorry to say that lecanemab is not as good a drug as it is being promoted. I found an article in Axios that revealed that the results on the lecanemab (Leqembi) trial published in the New England Journal of Medicine left out some important information. The published results showed a 27 percent reduction in decline in early Alzheimers. However information published separately in a supplementary appendix in the journal that few people read showed that the reduction for men was 43 percent and the reduction for women was 12 percent. A 12 per cent reduction in decline is so small as to be impossible to observe. This information should have been in the main published report rather than hidden away.

Women make up almost two-thirds of people diagnosed with Alzheimer's so I can see why Eisai/Biogen doesn't want it known that the drug has not proved effective for women. I suspect that most physicians in the lecanemab program get their information and training from the drug maker and don't even know how ineffective it is.

The FDA has failed to convey this information to physicians and the public, and I believe there are some FDA officials who are collaborating with Biogen for their own financial benefit.

https://www.axios.com/2023/07/11/leqembi-azheimers-drug-women-men-efficacy

The good news is that the FDA Emory University clinical trial using the anti-inflammatory asthma drug montelukast to treat early stage Alzheimers was completed last year and they have turned in the results to the FDA this month. The FDA is currently doing a quality control review on the trial so I am hoping that the results will be made public within the next few months.

I started taking montelukast about seven years ago, taking 10 mg twice a day and later three times a day for the past seven years. The extreme mental fatigue that I was experiencing completely went away within one week after I started taking the drug twice a day. My mother was diagnosed with Alzheimers many years earlier and I was concerned that I was going down that path. Montelukast taken multiple times a day is effective at reducing chronic inflammation, which increases as people grow older in later life and I believe it will be proved effective in the future to treat many age related diseases.

Here is my website. You can leave a message there and I will promptly respond.

www.montelukast-repurposed.org

You are quite lucky to live outside the states. I am able to buy montelukast here in Ghana without a prescription, and it may be the same at your place or else the doctors may be more cooperative. I have received so many messages on my website about their doctors refusing to prescribe it and I don't have a good answer for them.

M1

I agree with Larry not to put too much faith in the lecunumab The results of a phase 3study of another similar drug were also recently published in the New England Journal and while it showed reduction in amyloid, it had no effect on cognitive function. The jury is still way, way out on these medications.

Judy.T.

Welcome to the forum, sorry you had to join. I would highly suggest a one story. We have a two story home with both bathrooms on the second floor, how ridiculous! My DH is in stage 6. We are at a loss at what to do with no bedroom nor bathroom on the first floor. I would suggest when looking at the new place, think of the future. Even floors so she doesn't trip on the rug threshold, no little steps. Right now my DH is having trouble with glass. He keeps walking into the storm door, so sliding glass doors might become tough.

Pietas61

https://alzconnected.org/discussion/comment/189968#Comment_189968

Thank You for that information. The only reason I am in a rush to go back to USA is for a drug I know nothing about. I know just enough about the FDA and how the corruption and money works to understand your comments. I'm a retired GM,PM, Estimator. The devil is ALWAYS in the details as numbers do not lie. So if 12% is true it is not worth the risk for the side effects. I could hire a person in this country to be with my wife 24hrs a day /7 days a week to care for her plus have a in home non live in maid for us and it not be a financial issue. I would have to stretch the budget & do without to get close to top tier living in USA. And contend with Hurricanes if we went to FL to get this lifestyle. She has been walking an hour a day on the beach across the street from us in the sunshine for exercise. The diet here is fresh farm to table everything daily.

It is the same here. 95% of the drugs can be purchased at any pharmacy without a prescription. She was given a prescription for 10MG of Donecil split in half daily. You have given me a couple of more research projects.

Iris L.

Good caregiving is the primary treatment for the dementias. Medications help with symptoms. A comfortable caring home situation is very valuable! There have been several overseas members who posted for support and guidance. If you decide to remain where you are, it's doable.

Iris

JDancer

I agree with Iris. Moving can be difficult for PWD. if you have support in your current location, I wouldn't move.

M1

If the major reason for moving is the lequembi access i wouldn't do it. Not by a long shot.

midge333

I agree with M1 - disrupting your life for a drug with questionable efficacy and significant side effects is not worth it.

Larrytherunner

Hi Pietas. I am glad you can get most of the medications without a prescription, same as here. From my 7 years experience taking montelukast, 10 mg once a day is not effective. It is only when I started taking 10 mg twice a day that my extreme mental fatigue disappeared. About 5 years ago, I was able to get the much cheaper generic brand and I started taking 10 mg three times a day. Twice a day for me, morning and evening, is the minimum effective dosage because if I ever forget one tablet, I would feel it the next day. With three tablets per day, morning, noon and evening, if I forget one, I am still ok.

I agree with you that natural food is much more available than in the states. Also people know how to cook and have the time here.

When I was in my early 50's, I started getting stomach pains all the time. I went to the doctor and was diagnosed with Irritable Bowel Syndrome (IBS). I took different medications and stopped eating certain foods, but nothing worked. At my federal government job, I did not apply for higher paying supervisory jobs because I didn't want to work around a lot people while I was in pain. I kept to my small corner office by myself writing up reports. I could have had a bigger retirement now if I had moved up.

When I retired and moved to Ghana, within two weeks, to my surprise, my stomach pains went away. I was now eating cooked food with natural ingredients. I discovered that the highly processed food that I was eating in the states, with all of the added chemicals and sugar, was giving me the stomach pains. I am lucky that my wife knows how to cook natural food from scratch. We buy a lot of fruits, which they sell on the streets and open markets. We buy whole, not cut up, to make sure they are properly washed with clean water.

I think living overseas is great when you find the right place. I am thankful the US dollar is still strong.

Pietas61

Thank you all for the feedback. I think my best move may be moving back to the USA if I put my wife's best interests first. My wife's only daughter said she can transfer to any of the States I am looking at. I think these last few years my wife has should be spent with her daughter and granddaughter as they have a close relationship. Her daughter wants to relocate to wherever we are at. I could stay here and easily afford 24/7 quality care for my wife but she would be missing out on her last coherent years with her daughter and granddaughter. We spend our days walking the beach and Malecon across the street from our condominium and I am thankful to have lived the dream for the past year and a half. How blessed we have been/are. I am considering San Antonio TX as a possible final resting place for this journey. My eyes are open now since the diagnosis as I see her slip away. The past 2 years now make sense. Someday she will leave me. But not today.