Alzheimer’s

csfryou · February 1

My beautiful sweet wife (70) has just be diagnosed with Alzheimer’s. My heart is breaking. I feel numb, lost, disoriented, scared, anxious…etc.

My mind races to far ahead and I think of what will be rather then what is for today. It’s early, we just found out last week.
it’s raw.

Any words of wisdom and/or next steps I can take as a caregiver, would be much appreciated.

tonyac2 · February 1

I’m so sorry @csfryou for you and your wife. This diagnosis is heartbreaking and devastating. The fact that there is no cure makes it ever harder to accept. My DH has vascular dementia and it has totally changed him, me and our lives together. You’ve come to a wonderful place full of caring and understanding people that will simply listen, or share advice if asked. I hope others who have more organized thoughts than me will share some helpful info. It might feel like you’re trying to drink from a fire hose, but we’re all in different stages of caring for a LO with this dreaded disease and with different experiences. Oh how I wish I would have found this group years ago, it would have saved me from many mistakes I’ve made. Please keep coming back, we’re here for you.

jgreen · February 1

Dear @csfryou Welcome

As with @tonyac2 I am so sad for you and your DW. So very glad you found us.

You will find a lot of support, caring, experiences, advice, and most of all love here. I hope you will check in with us as often as you can.

Two pieces of advice I can offer are (1) research as much as you can and (2) if you haven’t already, seek advice from an Elder Care Attorney.

(1) There are some good websites about Alzheimer’s and Dementia - Tam Cummings, Teepa Snow, and Natalie Edmunds to name a few. There is also a good book “The 36-Hour Day” (8th edition) that was recommended to me and others.

(2) The attorney can help with durable powers of attorney (DPOA), Healthcare Surragate, and other legal matters to help both of you get set up financially and protect your assets. I went to attorney first and talked openly about our situation, then took my DH to sign all the paperwork. I framed the visit as ‘we are getting older and we need to get our affairs in order’. DH went along peacefully. Our son is my power of attorney if anything should happen to me first.

I know others will follow with more great tips for you. May God watch over you and your DW as you learn to navigate this heartbreaking journey. Hugs 💝

annie51 · February 1

I’m so sorry to hear about your wife. It is a devastating diagnosis and all your feelings are perfectly normal and very common. I can echo @tonyac2 about the incredible value of this group. You can vent your feelings without judgment, have your feelings validated by those who feel the same, and get wonderful advice from those who have been in your shoes. For now, just breathe. The first thing I did was read the book “36 Hour Day”. The other thing to do early on is see a certified elder law attorney and get your plan in order - especially a durable power of attorney. The next thing to do is try to stop thinking about what’s coming, and enjoy the time you have now while your wife is still in the early stages. Do some traveling, spend quality time with family, enjoy the things you like to do together, whatever makes you both happy. As things progress you will adapt, and this group can help you do that. Dementia caregivers are a special breed - your love and the support around you will get you through.

BPS · February 1

Talk about it only as much as she wants. Some people want to be involved in preparing while they are in early stage and can and some don't. We talked about it once after her diagnoses and after that I never said Alzheimer's to her again. We just continually adjusted as she progressed.

Abby627 · February 1

I have found that I can navigate this horrible disease because I have grown with it. We’re in year 5 now. When my DH was first diagnosed, I was panic stricken. Like everybody else, I was horrified, scared, desperate, hopeless…… But then I realized that every stage doesn’t hit at once. We have time to adjust. It has been a very gradual progression and I’ve become accustomed to each new stage. It sure isn’t easy, but I find it better if I just grow with the disease. Even though all the excitement, intimacy and passion is long gone, the love is every bit as strong. Now it is my obligation, and also my honor, to be the one caring for him. It’s part of the path God has put us on and I’m facing it with courage and grace. Maybe as this progresses, I won’t always feel this way, but I sure do now. I’m determined and love guides me. My heart goes out to you (and everybody else on this site). Please check back often to see what help others in this situation can provide you to help you get through. ❤️

jscott · February 1

I know and can relate to exactly what you are going through. My DW (71) was diagnosed nearly 5 years ago. My reaction was fear and sadness. It still grips me from time to time. I only wish I could just embrace each day without fearing the future. My sweetheart's progression has been very slow and we are still doing well, able to travel, enjoy our family and eachother. I am trying to stay focused on today but honestly, the fear of the future never leaves me. I can only encourage you to learn as much as you can, love her and take advantage of all the good that is there. There is no way of knowing how this will progress and hopefully it will be slowly for you as it has been for us. We never discuss it as my DW has anosognosia and is completely unaware of any issues. I am learning to adapt and cover as well. I let family know early on but only let other's know as needed. Prayer is my escape along with getting out once a week with some guy buddies. Other than that, I love her and want to make sure she is as happy and content as I can possibly make her. I realize that I need to adapt and be much more flexible and patient. It isn't her fault! But, every time something happens that lets me know she has this disease, it cuts me like a knife. I can never show her though. She is the great love of my life and serving her is a privilege. I pray I can continue to care for her as long as it takes. Our lives have changed but not our love.

Timmyd · February 1

https://alzconnected.org/discussion/75252/alzheimer-s

Your reaction seems quite normal. It took us weeks to recover from the shock of the official diagnosis, but the emotional impact did subside. We eventually got back to the routine of living.

There is a lot of good advice on this thread. I will add this. If you found you have been impatient, annoyed, or upset with your wife in the months or years leading up to the diagnosis, use this time as an opportunity to reset. For us, there was a lot less conflict, and more patience following the diagnosis.

H1235 · February 1

Welcome. You have received great advice. As far a the lawyer, don’t put it off! As jgreen explained she can no longer be your person if you needed to be hospitalized or started showing symptoms yourself. I didn’t see a living will mentioned above. I will attach a few resources that might be helpful. I agree that learning all you can about dementia will help you to better understand how to care for her, interact with her and be more understanding of what she is going through.

DBAT.pdf

Anosognosia and Dementia - AgingCare.com.pdf

understanding-the-dementia-experience.pdf

https://www.darpelelderlaw.com/therapeutic-fibs-and-dementia-a-compassionate-approach-rooted-in-love

blacksparky · February 1

So sorry for your terrible news you and your DW received. You have been given great advice from all the posts before me. On top of the advice given, I have a couple of suggestions that I have done. Take each day as a blessing and enjoy the time together. As the disease progresses, there will be different things to be blessed for. Also while your journey is at the beginning, take as many trips and do as many things that you might still have on your bucket list, while your DW and you can enjoy together. My DW was diagnosed 3 years ago with EOAD at the age of 53. She has now progressed to the point that we can’t do much anymore but I still make each day the best for her. This is a great forum of people that have really helped me.

jfkoc · February 1

It is a rough diagnosis and the journey has more than its share of bumps and road blocks.

My very best advice is one word LEARN. My second piece of advice is to stay here with us. We understand and we care about both you and your wife. We are here to listen, to pass on information and to share all we know.

You may not always like what is posted but do consider before dismissing.

Hug sent…..Judith

White Crane · February 1

Hello and welcome to the forum. You have received some good advice already so I won't add too much more. If you have trouble finding a certified elder law attorney, look up nelf,org. There you will be able to find a list of all the "CELAS" in your state. Something that has helped me over the years is to remember to not to try to reason, argue, or correct my DH. It only leads to frustration. If you find you need help, contact your Area Agency on Aging. They offer several services and can be very helpful. Also, I know it is early in your DW's disease but start looking into what Memory Care facilities are in your area. It's hard to think about right now I know but it helps to know what is available. Lastly, as others have said, come here often and ask all the questions you like. We all understand. Hugs.

Brenda

SDianeL · February 2

welcome. Sorry about your wife’s diagnosis. We understand how you feel. You have received good advice already. Ditto on reading the book “The 36 Hour Day” which helped me after my husband’s diagnosis. The best advice I received here from this group was: 1) never argue with someone with dementia. Get in their world. And 2) you can’t reason with someone whose reasoner is broken. I repeated that to myself several times a day as he progressed. Come here often for info, support or to vent. You are not alone. 💜

debriesea · February 2

So much good advice has been given here. This is not an easy path we are on. One issue I had during the first part of my DH diagnoses was “ambiguous grief”. My emotions were all over the place, tearing up or full on crying at random times. There came a moment in a teary day that a favorite song came on and I went from teary to weeping to full on gut crying and I let it all go. Afterwards, I realized I was grieving the slow loss of my DH. Somehow, the realization made it easier to cope with the grief and the tears gradually became less and less. I’m now at the “acceptance grief” stage that someone on this site phrased.
Getting through the beginning stage is very tough. Try to simplify your life now as best you can. My kids saw me falling apart and helped make a plan get rid of the extra stress. What a blessing that was.
Besides this site, which is the BEST, try to find extra help, hopefully through family and/or friends. By reaching out, I’m amazed at how much support I’m receiving.
Praying for you as you embark on this “new adventure” that nobody wants to take.

Michele P · February 2

I am so sorry you are here. You have been given excellent advice. A few suggestions: as suggested, see an elder law attorney immediately to get your legal affairs in order while you wife can still sign legal documents. Get HIPPA forms signed so you have full access to medical information. Call social security and become her designated payee. If there is an Oasis Senior Services in your area, reach out to them. They will help with in home care options and help with a memory care facility. Get on a waitlist for a memory care facility now. This is part of your plan b in the event you can no longer care for your wife. Put TILE gps trackers on keys, phone, wallet, purse. They track the item and person. Your wife can no longer drive. If she gets into an accident, you can get sued for everything you own. Most insurance companies don’t cover accidents once you are diagnosed with Alzheimer’s. Get log in information and passwords for all accounts, computer, phone. Call your local Council for the Aging and ask what is available including daycare options. The 36 Hour Day is your first book to read. It will help you prepare for what is coming next. Start to “childproof” your home. Don’t argue with her. Her reasoning is broken. Take blame for everything and apologize for what you did not do. Travel and enjoy every minute with her. Make a lifetime of memories now. If there is a Mayo Clinic near you, get a referral for The Habit Program. Get her started on the Brain HQ online games. It will help build neurons in the part of her brain without disease. Look into Dr. Dean Ornish’s Lifestyle Program and the Pointer Study. Do whatever you can to slow the progression. Come back here for support and help.

howhale · February 3

So sorry that you are joining this club but it can be a lifesaver for you and enable you to provide the very best care for your dear wife. Lots of great advice in what has been shared so far and you need to get things in order quickly All I will offer is use this site a lot. At the very first sign of a change in your wife, come here and post. These folks will give you the very best advice from real life caregiver experience. I found those rare minutes when my dear wife was still asleep or sitting quietly as the time to hop on here and ask my question, or search what has been posted to get ideas and help. You will need every resource available as you navigate this path with your loved one and this site can help you see ahead through the darkness and find the boulders before you run into one. Be a frequent participant here and you will be glad. No frequent flyer points earned but life saving help for you and your loved one.

Phil1953 · March 7

My DW is at mid to late stage dementia and I’m a basket case. The ambiguous loss of her has me in tears constantly. I have a caregiver in 5 days a week now for 2 hours a day, plus family and friends. I am exhausted and so sad.

Dusty217 · March 7

Welcome, I am new to the site as well. MY DH has also just been diagnosed. He is 67. I completed the wills, POA, Health care POA, Living will and End of Life decisions. I did this all with my Attorney's office I have used for many things. My next step is setting up a Medicaid Trust. This will protect my house and other assets. The total cost is around $5000 but it means I can leave things for my kids should DH need long term care. He was involved in all this. The trust must be in place for 5 years to protect assets so that is why we are doing this now. I am also reading the book 36 hour day. Please keep coming back, I've picked up many tips already and have felt very welcome.

Karen711 · March 7

csfryou- welcome to this space!
I’m sorry to hear about your wife’s diagnosis. You’ve received great advice above, and a heartfelt welcome from the good people of this group who have been going thorough the very thing you are now embarking on. You will find a lot of wisdom, support, and love here. We are all at various stages in supporting our loved ones through this journey and understand what you’re going through! Keep us posted!

💜

Jeff H · March 8

https://alzconnected.org/discussion/comment/267613#Comment_267613

So, your trust has to be in place for 5-years before it's valid for asset protections? I have all of the POA's, and Will documents updated. My main fear is that my DW will need long term care before 5-years.

howhale · March 8

Don't know where you are located, but in Georgia I was advised that there is a relief for the spouse for the five year look back period. Again, not sure where all it applies but you may want to ask that question specifically for any provisions of relief for the spouse in any area being addressed. I was at the point of likely needing to make some drastic changes as my wife advanced and in the process of getting all ready, the attorney advised me of this relief for the spouse.

Dusty217 · March 9

https://alzconnected.org/discussion/comment/267644#Comment_267644

The 5-year period counts for assets other than your home. But Medicaid would come after the home once you pass. That's most States

Michele P · March 10

https://alzconnected.org/discussion/comment/267644#Comment_267644

I would ask an attorney this question. The laws are different in each state as far as what assets a facility can go after for payment. We were told the assets were protected as soon as the trust was funded.

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