Husband recently diagnosed with Alzheimer's.
I would love to hear from others who have been a caregiver for your loved one with what I need to do, be aware of, or what was the biggest help for you as you began your journey.
Comments
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This i based on my experience with my wife.
Develop patience.
I realized she is no longer the adult she was. I had to realize that I now was caring for a child. (I joke that I had my first child when I was in my sixties.)
Hygiene is among the first things to go. Rather than insisting she change and, at times, holding her down, I need to wait until she is ready to have her clothes changed.
I have someone that watches her a couple of hours a week for a couple of hours each time. Even though it is a short time, it is still time I have to myself without worrying about my wfie. I do have time to myself when she is asleep but it's not always guaranteed that she will sleep long and I cannot leave the apartment for an extended time while she is asleep.
I needed to understand what she was saying. I learned that she means her stuff sloth when she asks about her baby. Some gibberish she says means she wants something to drink.
If she doesn't take her medicine, grind it up and put it into a drink. My wife love Naked Juice Mango Machine. It's a think juice and is ideal for putting powdered and liquid medicine in. I power about 1 inch into a cup, put the medicine in, and then stir well. I always offer her (She can taste the the medicines in plain water so it doesn't do any good to put the medicine into that.)
It's good to find someone what has also been a caretaker.
I need to remember that logic and consistency are gone. Also, just because I may ask her to do something and she says okay does not mean she does it. I need to repeat myself.
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welcome. You’re at the right place for info and support. I found doctors to not be much help. Sorry about your LO’s diagnosis. First, get your legal affairs in order. Don’t delay. DPOA, Medical POA, HIPPA form for each doctor, wills. I didn’t make a big deal of going to see an attorney, I just told him we were getting older and we both needed to do them. .Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Search online for dementia caregiving videos by Tam Cummings or Teepa Snow. I kept a list of my DH behaviors (I didn’t let him see it). I sent the list to his doctors monthly at first, more often as the disease progressed. Search online for 7 Stages of Dementia chart that lists behaviors in each stage. It helped me understand where he was and what to look for in the next stage. Start thinking about your LOs long term care. Will you care for them at home? If so you will need help. Will you hire help? What about later? Will you look for a memory care facility? If so there may be waiting lists so you would want to get on the list.
2 things I learned on this forum: 1) never argue with someone with dementia, instead get into their reality and 2) you can’t reason with someone whose reasoner is broken. As the disease progresses your LO may have anxiety and agitation. If so, the best type of doctor to manage medications for dementia is a Geriatric Psychiatrist. Ask for a referral to one as it may take awhile to get an appointment. Come here often for info and support. We understand what you’re going through.4 -
@lariedel
Hi and welcome. I am sorry for your reason to be here but pleased you found us.
Once you have a diagnosis and your ducks in a row after visiting an elder law attorney, the 3 things that will see you through are—
Knowledge. Know your enemy and attempt to prepare yourself. The information can be like drinking from a fire hose but remember that each PWD will present in their own unique way. Not every PWD will have all of the symptoms or behaviors you hear about. Books are a good resource. The people here are too.
Patience. A lot will be required of you with very little acknowledgement. It is all about him now. You may find yourself having to do things you find personally abhorrent like lying to keep your LO safe. One of the cruel tricks of the disease for caregivers is that PWD often develop anosognosia which means they can't appreciate how impaired they are. Add in the typical lack of empathy and you won't even get gratitude.
Pragmatism. You're human. Depending on your personal strengths and the kind of care your LO needs, you may find that you will need help on this journey or placement at some point.
HB5 -
Welcome. I think it can be hard to accept that our pwd should not be included in important decision making. People tend to want to include their lo in things much past the time they are able to truly understand and make well thought out decisions. Taking away independence is tough, even heartbreaking, but necessary. You are going to have to make decisions to keep your lo safe that will upset them and make them mad. Don’t let their anger stop you from keeping them safe and you getting the help you need. Dementia is so much more than bad memory. (Anosognosia, lack of empathy, poor judgment, inability to plan, lack of social skills, confusion, inability to learn new things, change in personality, change in food preferences, Confabulation). The anosognosia and the fact that you can’t reason with a pwd can make things very difficult. Sometimes it’s best to fib, do things without telling them (behind their back), or just agree with things that are not true (no point arguing about wheather a long passed musician is still alive, get used to being wrong). It is very difficult to get used to and goes against what seems right. I also agree that a lawyer visit is very important. I’ve attached some resources.
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Getting the legal and financial business in order is a critical early step. Also critical for me was identifying sources of help—doctors, other professionals, clergy, friends—who could offer sensible counsel or who could just listen to me with empathy.
Learning about the disease has been depressing but ultimately empowering. And I have found it absolutely true that every person’s journey is unique. There are some common symptoms that my PWD has never shown and others that are common to one stage that my PWD persists in doing many stages later. I have learned that this disease requires constant adaptation by the caregiver. You make the best decisions you can at each point with the information you have at that time.
Reaching out for information and support is an excellent step. The people here will support you.
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I am sorry you are here with us on this journey. We are here to help you. The advice you have been given so far is excellent. Here are other important suggestions:
Before you do anything else, get an appointment with an Elder Law Attorney to get your legal affairs in order. Once you have a POA and medical directives, give a copy to your loved one’s pcp. Have your loved one sign HIPPA release forms to allow you full access to doctors and medical records.
You will need to take over all finances. Make a list of all accounts along with account numbers, log in and passwords. Do the same for all bank accounts and brokerage accounts. Notify your broker and accountant about the diagnosis and ask if there is anything you need to do now. We were told to take out a 2 million dollar umbrella by our trust attorney.
Driving: Alzheimer’s impacts driving. Most insurance companies won’t cover an accident with the diagnosis. Call and ask if they will cover an accident. There are companies that will certify that you can safely drive. The test is 3 hours. Most people on this site work towards taking over driving because if your loved one gets in an accident, you can get sued for everything you own. Ask your financial advisor which assets are at risk if you are sued.
Tour assisted living/memory care facilities and get on a waitlist in the event you need it in the future. Facilities are at full capacity with two year wait in some areas. Oasis Senior Services is an excellent free company that assists with in home care agencies and assisted living/ memory care facilities.
Contact your local Council for Aging and ask what services are available.
Get a plan b in place. Who would care for your loved one if something happens to you?
Have the tough discussions about what your loved one wants or doesn’t want as far as medical care as the disease progresses. Preplan your funerals.
Once this is done-enjoy every moment together. Travel, do what you love together. Make a lifetime of memories together now.
Find a therapist or support group to help you get the this. I wish you all the best.2 -
We bought TILE gps trackers and attached them to our phones, wallets, keys. Through the Life360 app, you can track these items and the person carrying them. As the disease progresses, speak to your local police or sheriff’s department about Project Lifesaver. They will give you a gps tracking watch that will allow them to track and find your love one if he wanders and gets lost. Start reading The 36 Hour Day. It will prepare you for what is coming and give you advice on how to prepare for and navigate each stage of the disease. Attend all doctor appointments and take notes in a notebook. If necessary, hand the doctor a note with information you don’t want to repeat in front of your loved one. Keep notes on new behaviors. This will help you figure out what stage your loved one is in.
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I've been on this journey for about four years now with my dad, and I remember feeling overwhelmed at the start. It's a steep learning curve, and I wish I'd known a few things back then that aren't usually in those initial resource packets.
One of the biggest things I overlooked was the concept of "therapeutic fibbing" or validation. Early on, I'd try to correct him when he insisted on doing something impossible or talked about someone who wasn't there. It only caused stress and arguments. Now, if he asks where his deceased brother is, I would say something like "He's probably resting right now, we can try calling him later," and then distract him with something else. I just think that most of the time, you have to live their reality and not try to convince them it is wrong.
Another thing was understanding that it is ok to have "disaster days" and to forgive yourself constantly, so it doesn't build up in you. There will be days when you lose your patience, when nothing goes right, and when you just want to disappear. That is NOT a failure. You are someone who is under immense stress. Lower your expectations for yourself and for him on those days, and just focus on survival.
I really struggled with the guilt until someone told me that feeling frustrated doesn't mean youu dont love him.
I also learned that keeping their eyes and ears busy with calm, familiar things helps stop them from getting upset, especially later in the day. We found that a lot of streaming services were too complicated with menus and endless choices, which makes my dad anxious. I ended up getting a TV box (to be specific, JubileeTV), and it was a real unexpected help. It has a simple remote and interface, so his anxiety of dealing with it is gone, but on top of that, it has sensors that track his movement, and I get an alert on my phone when something is off. It helps when I have to leave home. I can keep an eye on him through the camera, set him reminders, call him even if the TV is off, and fix any issues. Use technology in advance so you can leave home when you feel like it or need to, and not worry about him.
Lastly, and this is very important, find your outlet and protect it with your being. For me, it's a quiet hour with a book after he's asleep. You can not pour from an empty cup, and this disease is a marathon. Prioritise your breaks and your health, even if it feels selfish. It will serve you and him well.
Sorry for the long comment, but I wish I knew all of this sooner. It would save me a lot of health and nerves. Yet, we're all learning as we go. I bet you are doing your best.
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Finding out your husband has Alzheimer's is one of those moments where the ground shifts under everything you thought you knew about the future, and the fact that you are already reaching out and asking questions tells me you are the kind of person who is going to show up for him in ways that matter. The honest answer is that no two journeys look exactly the same, but there are things that almost every caregiver wishes they had known earlier, and this community has lived through enough of them to give you real, grounded answers rather than just reassurance. A few things that tend to matter most in the beginning are getting legal documents like power of attorney and advance directives in place while he can still participate in those decisions, connecting with a neurologist or memory care specialist who can help you understand what stage he is at and what to expect, and finding at least one person, whether that is a friend, a therapist, or a support group, who you can be completely honest with about how you are doing. The caregiving itself will teach you most of what you need to know, but protecting yourself early, your sleep, your relationships, your own medical care, is something most caregivers skip and then deeply regret. You are not alone in this, and the people here who have walked this road ahead of you are one of the most valuable resources you now have access to.
I hope these references can help:0 -
Welcome! I am fairly new to the community as a caregiver but came across Zinnia TV and it has helped my LO. There is a free trial and you can see if it is helpful to you and your family:
https://www.zinniatv.com/0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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