Helpful Suggestions Eight Years In: Part 2

Bill_2001

Continued from Part 1.

Manage Daily Life.

11.      De-clutter and simplify your home – the sooner the better. If you start this process now, it will be easier to continue as your spouse’s condition worsens. Less clutter equals fewer items misplaced or misused. De-cluttering is very therapeutic – let go of things that will never come back into your life. Do you really need matching skis or golf clubs anymore? On the next gray and rainy day, go into the basement, set up a chair for your spouse, and start dejunking. My wife spent many days during 2021 and 2022 keeping me company while I boxed up many things for Goodwill. As I found harmless items, I handed them to her to enjoy for a while.

12.      Hide an extra set of house keys where you can get to them if your spouse locks you out of the house by mistake. I locked myself out once – with my spouse inside. I was very glad I had taken this step, and I was able to get back inside with no problem.

13.      Disable the oven, stovetop, and microwave, or take advantage of any child-lock technology on your appliances. Take the knobs off of the stovetop.

14.      Use high-quality adult incontinence products. Do not cheap out here! The better products will make your job a bit easier, and may even give back some of your freedom to take your spouse out for a while. Keep spare incontinence products in a bag in the trunk of your vehicle, along with a change of clothing. Also, take your spouse to the restroom every 2 to 4 hours, as this may mitigate accidents. Speak kindly and with a soft voice during toileting and diaper changing, to keep your spouse calm and cooperative.

15.      Take your spouse outside, for a walk, or for a drive. It is good for both of you to get outside and see some daylight. The drudgery of caregiving usually keeps us indoors far more than we normally would be otherwise. Go for that ride – for an Alzheimer’s patient, a car ride is never a waste of gasoline.

16.      Create a simple system to manage your spouse’s medications, and keep it out of reach. You are in charge of it now. Get three-month supplies if you can, or arrange for delivery. Also, consult with your spouse’s doctor about these medications during each visit. You may find some of them are no longer needed, or there may be better alternatives. Keep costs down (or free) by insisting upon generic medications. When helping your spouse take pills, place them in your spouse’s hand, then place your own hand under theirs. Gently move their hand toward their mouth, and they will usually proceed to take the medicine. This method has worked for me.

17.      Do what you can with hygiene, namely showers and dental care. I shower her and help her brush her teeth once per day. If she is not having it, I will try again in 10 minutes. This is surprisingly effective! If the second attempt fails, I just let it go for the day. The only exception is after a bowel accident – a shower is necessary then. I will try as needed until successful. I am gentle and speak calmly to her, no matter how frustrating it is. She usually responds to love, a soft voice, and a gentle nudge into the shower.

18.      Cooking can be therapeutic, or a chore. If your spouse was the cook (as my wife was), you may find yourself lost in the kitchen. Try simple recipes, and make enough to last two or three days. There is no shame in asking Marie Callender to help now and again.

19.      Take mini-breaks. I enjoy the hour that I get up in the morning before I wake my wife. Same in the evening – I get her to bed one hour before I turn in. During the day, my goal for her is “clean, safe, and fed.” Once I have her showered, dressed, medicine dispensed, and fed, I turn on the TV for her and I have some time for myself. I also use an adult day care three days a week, during which I go to work and have a (mostly) normal day.

20.  If you are still working, take advantage of work-from-home opportunities and adult day care services. These are both paramount for the working caregiver. Let your boss know what is going on, they may be able to make concessions for you during this time. Also, have an exit strategy in case the job or adult day care situation fails. Speak with your financial advisor, and plan to weather a storm.

Adjust Your Expectations.

21.  You will most likely need to reduce or eliminate traveling. This is a stressful activity for anyone, but for someone with dementia, it may be unmanageable. It will also not be a walk in the park for you either. I know this is not welcome news for those that planned to travel during retirement. Curse dementia for arriving just in time to derail those plans! My wife and I traveled until 2019 – four years after this ordeal began. The last trip was miserable. I have since turned to YouTube travel channels. Traveling with my dear wife is just too difficult and risky. Imagine getting separated from your spouse in their condition. It was sad to give up traveling, but it has also eliminated a major source of stress.

22.  Have reasonable expectations from the medical community. Dementia has no cure, and gets progressively worse. Your spouse’s doctor will have helpful ideas, and the ability to write prescriptions that may help with symptoms. But do not put much stock in tests, scans, etc. They cannot really see much, and even a diagnosis is illusive. After several years, you will discover that you know much more about your spouse’s dementia progression than the doctor does. Write down new symptoms and dates to share with the doctor. This may help, but you may find your spouse’s doctor simply confirming what you are already dealing with.

23.  Have you seen the advertisements suggesting that you can “get paid to take care of a family member?” Do not get your hopes up. Keep in mind that your loved one must usually already be on Medicaid (Medicare is not sufficient), and that the care cannot come from a spouse. Surprise!

24.  Reach out and keep family and friends informed. They may not be as helpful as you had hoped, but they do care about you! They may have busy lives of their own and their own crosses to bear. Keep a list of contacts posted by the telephone. This will serve as a daily reminder to call people, and will help emergency personnel contact your family and friends if needed. Also, keep your cell phone charged and with you at all times.

25.  You may not be able to do as much on your own now. Be sure all of your backup plans are in place, as you are basically single again. Your spouse can no longer help you change a tire, fix a faucet, or change the smoke detector batteries. Keep your AAA membership in force, have telephone numbers for plumbers/electricians/HVAC technicians handy, and pick up spare batteries and other things your spouse used to deal with. Hire help sooner now. Don’t climb a ladder anymore, as no one will help you if you fall. Do not try to move that heavy sofa on your own. You have to REALLY THINK THINGS THROUGH now. If you are considering doing anything that is even remotely risky, think it through, and call a friend for help.

Final Thoughts.

You may notice that I have developed a can-do, take-charge attitude. After eight-plus years, I have learned that I am mostly on my own, and that relying on the state or the medical community has been littered with disappointments. I have finally arrived at a place where I can accept the role of various agencies and professionals. I may utilize their services, while not expecting miracles. Help is available, but do yourself a solid and rely on your own resourcefulness as much as you can.

With Love,

Bill_2001

Jgirl57

As always, thank you Bill_2001. You are a great friend to all of us here .

Kibbee

Much good advice. Thank you.

wheeljo

Thanks you so much for your insight, and honesty! I am just getting to really see the picture and our future.... Judging by your descriptions of the different phases, I would say my wife is in phase three+ Items are constantly being misplaced, cant remember things we discussed a couple minutes before. Cognitive abilities are almost non-existant.

ImMaggieMae

So much good advice, Bill. There are many days when you’ve given me the courage to push forward when things felt impossible. It’s good to know that you are finding your way through situations that we all find ourselves in sooner or later. Your wife is lucky to have you.

CindyBum

Thank you!

Mint

Thank you, Bill

Joe C.

All great recommendations and well said Bill. Thank you.

JeriLynn66

Bill, I’m sending your insightful thoughts to my adult children as a future how-to reference. Thank you so much!

fmb

Bill, Thank you for these two insightful posts. They should be required reading for anyone on this journey.

Babz0226

Number 14- what diapers do you recommend, I find that so confusing to pick the right brand -that would be helpful to know.

Thanks

darcytg

Thank you, Bill.

Your grace and kindness are a beacon.

Beachfan

Bill,

Having navigated the journey through to stage 8, your “guidelines” are spot on and very helpful. May I add the following:

(1) Have a fail proof plan B at the ready in the event the caregiver goes down. After my second COVID vaccine, I passed out at my granddaughter’s bus stop, landing in a holly bush, followed by an ambulance ride and a 6 hour stay in the ER. (I had left DH safely sitting on the sofa while I “ran” outside.) Thankfully two of my kids and 7 grandkids live within walking distance of my home. The troops rallied and saved the day, but I shudder to think what might have happened if I didn’t have their support.

(2) As stage 8 looms, make some practical preparations, as uncomfortable as that may seem. On the day that Hospice arrived and I was advised to gather the family, I did so, thinking for sure that DH would rally and we would have “time”. I called the funeral director, a friend, to put him on notice as DH was in a facility 40 miles from home. As it turned out, the FD had to travel late at night to the MCF, and only after the Hospice nurse had been summoned to “pronounce ”. (Apparently end of life protocol varies depending on the location of death.)

Nothing associated with Alzheimer’s is easy or pleasant, but I found that knowledge and preparation saved a lot of heartache along the way. Thanks again for your insightful post.

Bill_2001

Thank you all for the positive feedback.

In response to the inquiry about number 14 (diapers), you will do fine with quality name brands. Overnight rated diapers are best. Daytime diapers are fine if they are rated for heavy use. Avoid generic store brands, but these are better than nothing if you are out and need to pick up something quickly.

Here are some that I have had really good experiences with.

--Around the House--

Always Discreet Adult Incontinence & Postpartum Incontinence Underwear for Women, Small/Medium, Maximum Protection, 32 Count

--Daytime Outing--

TENA Incontinence Underwear for Women, Super Plus Absorbency, Small/Medium, 72 Count

--Overnight--

TENA ProSkin Overnight™ Super Protective Incontinence Underwear, Heavy Absorbency, Unisex, Medium, (56 Total - 4 Packs)

Attends Premier Protective Underwear with Dry Lock Containment Core for Adult Incontinence Care Unisex, Medium, 18 Count

Babz0226

Thank you for all have done for everyone, when I first started reading I printed out The Calvary Is Not Coming so helpful and I read it from time to time. I assume I can use these brands for my DH (77 yrs old) I love everything you write and respond to, I hope you realize how helpful you are to people.

Denise1847

Thank you Bill. Your courage is amazing.

Carmen M

Thank you for all the helpful information. Always beneficial for a reality check as painful as it might be.

midge333

Thank you!

Hollyfedak

Where can I find your reference”The Calvery is not coming”?

JeriLynn66

he Cavalry Is Not Coming

Bill_2001 Member Posts: 67

Member

September 2022 edited April 5

Reposting for the new platform.

I have not posted here for quite a while, and I want to let you know that I am still here. I hope you all are doing well, and I also have a thought process to share with you.

October 1, 2022 will mark seven years since my wife’s dementia became obvious, and that I knew for certain that this journey would begin. I had sensed something was “a bit off” before then, but that date stands out as the moment that I knew with certainty. I use the date Oct. 1, 2015 as the beginning of this journey.

I write this today with a light heart, and a feeling of optimism that I have not felt for years. Nothing has changed – my wife is still in the throes of dementia, and I am certainly still an exhausted, burned-out caregiver and fulltime employee. I have not placed my wife in a facility – she is still at home with me, or at the adult day care while I work. As I said, nothing has really changed, save for the continuous downhill progression of this god-awful disease.

Rather than post another hopeless, angry rant filled with strife, I want to share with you how one of my greatest fears has come to pass, and how it is actually a relief. My fear has always been the following:

The Cavalry Is Not Coming.

I have spent many a day frozen in fear of being alone: Afraid of being left emotionally alone, physically alone, and spiritually alone. Alone in feeling my way around in the dark, trying to navigate dementia caregiving as best as I can. Many of us on this board post “virtual cries for help,” and I have done that many, many times. I have gone into this ordeal kicking and screaming, which is a perfectly human and natural reaction to a trauma of this magnitude.

Some measure of peace and calm is found in simply discovering that the Cavalry Is Not Coming.

Family and friends mean well, the medical community cannot do much for a terminal illness, and non-profit organizations do what they can to educate us and mitigate the damage. There is not much anyone can do to help us. We are on our own.

In nearly seven years, I can only site one time that I had true, respite level help without a pricey invoice arriving afterword. Once, in seven years.

In times past, I would have been bitter and angry about this, but I have finally arrived at an important conclusion. I am on my own, and no one is really going to help me. I am no longer bitter about this, as I have finally realized that other people have their own crosses to bear. Odd as it sounds, there is a peace to be had in such a revelation.

In the movie Castaway, Tom Hanks’ character was marooned on an island. At first, he tried to find help: Screaming to see if anyone else was there, spelling HELP on the beach. All to no avail. At some point, he accepted that fact that he would have to fend for himself and got busy with the tasks of survival. He even learned to thrive.

Since I posted last, I have taken on the point of view that “The Cavalry Is Not Coming” to epic levels. My wife’s well-being today, as well as my future life, is completely in my hands now. I am now the King of the Castle, Lord of the Manor, Large and In Charge. Yes, I still have meals to cook, dishes to wash, showers to give, medications to manage, diapers to change, and a fulltime job to boot. Life is busy, difficult, and exhausting. But I have some measure of control, and I can call allthe shots. That ugly picture on the wall? Gone. Pizza night again? You bet. Two hundred cookbooks on the shelf? We only need twenty. This house needs to accommodate my needs so that I can best take care of my dear wife in these final times. That means removing tripping hazards, redecorating in a light and happy way, and decluttering to the max.

There is a feeling of relief when you just let go and realize that no one is going to help you. The kids (if you have them) are busy building a life of their own, and friends and family have their own problems to manage. I have lowered my expectations to nearly zero, and it has been very liberating. If you have reached this stage (or passed it), you understand. If you are still frozen, kicking and screaming for help, hang in there. Look around you and remember, The Cavalry Is Not Coming.

That said, continue to utilize services that are available. Keep up those doctor appointments, call the Alzheimer’s hotline (800-272-3900) when you are overwhelmed, grab takeout, call friends and family to talk, or even ask a small favor. Use devices and technology to help you – cameras, cabinet locks, grab bars, the “good” diapers, etc. Make everything as safe and foolproof as possible. Be sure your loved one cannot lock themselves in the bathroom, or that you cannot get locked out of the house. Secure anything hazardous. You are the Safety Inspector now. But do not expect anyone to be there to help you change your loved one’s diaper, make dinner, or wash dishes. Get that mindset that you are on your own and take control of it all. Your loved one can no longer help and can no longer make decisions.

After reading this, take a deep breath, and say “I am on my own, and I am doing the best that I can.” I really hope this makes you feel better. This is a horrible situation to be in, and sometimes realizing that you are on your own is just what you need to hear.

This also means that the decision to place your dear loved one in memory care is yours and yours alone. No one can tell you where you are on this journey, and no one can tell you how exhausted you are. You are on your own, no one is going to help you, The Cavalry Is Not Coming.

Nobody's going to help you

You've just got to stand up alone

And dig in your heels

And see how it feels

To raise a little Hell of your own

---Trooper, Raise a Little Hell (1978)

You're only human

You're gonna have to deal with heartache

Just like a boxer in a title fight

You got to walk in that ring all alone

---Billy Joel, You’re Only Human (1985)

With Love,

Bill_2001

549jb

Fabulous post……

WE ARE on our OWN with this….

ACCEPT that THE CAVALRY IS NOT COMING!!