It has been a year since my husband and I were released from Alzheimer’s. (All you caregivers know that when your loved one finally succumbs to this dreaded disease, you are released as well.) I hold up the figurative mirror now and take a long look back over all those years of his illness. The trail has been long and hard, sometimes beautiful, sometimes painful. What have I learned?

Each person’s experience is different. You have found some aspects of my experience that match yours, some that are completely different, and some that you will never encounter. Remember that if you have seen one case of Alzheimer’s, you have seen one case of Alzheimer’s. But (to paraphrase Michael J. Fox talking about his Parkinson’s Disease) the people living with this disease are the experts. We are each the experts on our perspective of how this disease has affected us and our family and friends. Don’t allow others to invalidate your knowledge because their journey has been different.

I am sure that the stress of my husband’s disease has shortened my life, in spite of my efforts to escape that possibility. There have been times when I could feel it, as if an elephant were sitting on me, trying to squash the breath out of me. There were times when I felt that I could not leave the house, or call anyone, or deal with any small job that needed doing. It required forcing myself in order to continue functioning in a normal manner. Sometimes, all that was necessary to move me was a phone call or a letter or an email from a friend.

I recently took a long trip with my sister. I relaxed more than I ever have in my life. That realization brought the dual realization that I was still quite stressed. So, upon returning, I began to simplify. I turned the yard care over to someone else. I have begun tossing out things that have required upkeep and space and extra energy over the years. As a dedicated packrat, that project is the most difficult and will require a lot of forceful lectures from me to me, but I have high hopes.

Many people have asked me what now, or seemed certain that I would soon move to be close to children and grandchildren. First, following your children can be very iffy, since their jobs and dreams often require them to move. Second, moving near them would mean starting over. After 48 years in this city, I have sent down long, strong roots. Most of my friends are here. My activities are centered here. My comfort level with all the daily necessities of life is here. Moving would be a major upheaval, and somewhat insultingly implies that I have had no life other than as it related to my husband. That being said, there remains the possibility that I would eventually decide to downsize, or to move closer to those children and grandchildren. Circumstances allow me to stay in place for now, and just consider all the possibilities at leisure before reaching any decision.

My definition of myself for many years has been “caregiver”. Sure, I have done other things, but everything I have done has centered on, and been guided by, the responsibilities of providing for my husband’s care. Now I am facing an empty wall. I know there are doors there, but I have not yet located them. In order to find out what the future holds for me, I have to first feel my way along that wall in search of those doors. They will not appear by themselves. It will take some effort and exploring. While I await finding the next big thing, I plan to continue the activities I enjoy, embrace new ones as opportunities arise, and spend lots of time with friends and family. There is a whole big world out there, and I intend to make the most of it for as long as I am able.

We are not asked what journey we would like to take in this world, or what paths we would like to travel. We make choices every day, and have a certain amount of autonomy. But in the end, it can all change or disappear in an instant. Our only choices are to do as much as we can every day, quit procrastinating, grab all the joy we can, live as if there will be no tomorrow, but hope that we are wrong and that there are a multitude of tomorrows, so we get to read one more story, experience one more trail, laugh one more time with our loved ones.

As you travel this path, I wish that all of you may find others who understand and with whom you can negotiate the labyrinth of this disease. I hope you can find something outside the disease that you care about and which will give you a focus away from Alzheimer’s, to allow you the respite to briefly step away. And never forget that this, while long, is only another chapter in the journey called Life, and that there will be further chapters for you beyond this one. Find a goal. Find something to laugh about each day. Find some way to keep living your life as you watch your loved one’s life fade.  Find more chocolate than s***!

Love, laugh, live. Take care of you, the caregiver. Carpe diem!

 

The end. He passed quietly and peacefully, with no pain. Often, they develop pneumonia, but he simply reached the point where he could no longer remember how to chew or swallow. Sometimes, the end stage of this disease causes the muscles to grow rigid, and that can be quite painful. I am grateful that this did not happen. I was not there when he died. I wish I had been, but realistically, after that many years, the chances of my being there at the exact time of death were pretty minimal. Looking back, I wish I had spent more time just hugging him even though he had no idea what was happening, and would move away after a bit. I did thank him for going while I was in town, instead of when I was away at a grandchild’s birthday or dance recital.

The words “widow” and “my husband has died” sound almost nonsensical. It has not set in. I feel as if I am in a bubble or in a light fog. I can see and hear everything, but not quite as clearly as normal. The grief of losing in limbo is different from the grief of finality. No matter how much you are prepared for the inevitable, you are not quite prepared for the reality. All through this disease, I have wrapped my sadness in a jacket of pragmatism. I have taken a practical approach, knowing that there are no cures, knowing it would end like this. In a sense, that was a protective shell which kept me from thinking about it as much. Like the proverbial turtle, I have pulled back into that shell of pragmatism in order to survive. Educating myself, talking with others, sharing this blog with you, my readers, have all given me strength.

It is good that our children came out after he was placed in hospice, so they could have one final visit after he perked up and when he looked better. It is good that they helped me take care of some of the business of finishing while they were here. People ask in amazement, “You are doing the arrangements alone?” Not really. Because of the time my children and I spent two months prior, I knew what to do and whom to see. I have made many phone calls to my children when there was a choice to discuss. The professionals have been very helpful in setting up appointment times and handling necessary business. They have made phone calls (in my presence) to notify the appropriate parties of necessary changes for Social Security, Medicare, house, car, insurance, pensions, etc. People have called me to offer help with memorial service, music, etc. I have been so busy for the last three days that there has been little time to pull into myself. Phone calls, visits and emails have all kept me focused on the present.

I had already made plans to be with family for a couple of weeks, so will keep those plans. That will be the time for me to stop and let it sink in, and for gorging on lots of hugs.

Since he was cremated, we have the luxury of choosing a convenient date for all, and plenty of time to plan the service that we want. I don’t know how anyone does all this in only three or four days after a sudden death. There is much to do, and we are not at our best.

*****

Nearly two months have passed. The memorial service is next week, so I am still crazy busy. I have taped lists to the kitchen counter, and do some of the jobs every day. Sometimes I am fine, then suddenly a wave of reality slams into me, and I shed a tear for what used to be. But not for long, because the list awaits.

After my father died, my mother said, that chapter is closed now. You don’t look back, you just look forward. She didn’t mean that you don’t remember; she meant that you find a new path instead of miring yourself in sorrow or regret. So, we take a deep breath, look up and out, and move on.

Three months ago, I received a call from my husband’s care center saying they thought he had had a stroke and were calling the EMTs. By the time I arrived, there were two emergency vehicles and half a dozen EMTs there, and it was obvious he had not had a stroke. His disease already qualifies him as brain-damaged, he has a Do Not Resuscitate order in place, there was no emergency, and it was a huge waste of resources. The center director said if he was under hospice, then hospice would answer any calls like that and take responsibility, so emergency personnel would not have to be called. By the time I reached my husband’s doctor for a discussion about putting him on this care (it requires a doctor‘s assessment and orders), I had already asked for recommendations on good hospice companies (they are not all created equal) and talked with 3 hospice company spokesmen. One had evaluated my husband at level 7-D.

To illuminate: Most dementia organizations divide Alzheimer’s Disease into 7 stages of gradually decreasing cognizance and abilities. Some further subdivide that final stage into 6 sub-stages:
7A. Speech is limited to 6 or fewer words.
7B. Speech drops to only 1 intelligible word.
7C. Speech is lost entirely.
7D. The person cannot sit up independently.
7E. Grim facial movements replace smiles.
7F. The person can no longer hold his/her head up. Body movements become rigid and painful.
(One could add a 7G, since the final stage is death, often from pneumonia.)

In conferring with his doctor, though, there had been no weight loss indicative of a downward spiral and no further changes since his last check-up 3-½ months prior to that. A doctor has to say in good conscience that his patient has only six months to live, and he could not give him such a low estimate. So no hospice.

Six weeks later, that changed. For two days, my husband lost his ability to stand or swallow. I called his doctor, he agreed that this was a dramatic change and it was time, he made the appropriate call, and a hospice representative was there in under two hours.

A word about hospice and what they do:
Visit the patient either at a care center, if they are already in care, or at home.
Provide basic medical care with a focus on pain and comfort management.
Give access to hospice team 24/7 (no more 4:00 a.m. calls to me saying he needs emergency treatment).
Pay for medical equipment and supplies, as needed, including, but not limited to, incontinence supplies, walkers and wheelchairs.
Provide counseling for patient and family on psychological, emotional and spiritual matters.
Offer guidance with issues of death, closure, and grief management.
Offer respite for caregivers.
Provide volunteer support such as meals and running errands, if the patient is in his own home.
Offer post-death counseling and support.
Hospice is paid for by Medicare, but costs Medicare (i.e. the taxpayers) less than repeated emergency visits.

He has been with hospice for about 7 weeks now. They check him regularly, and assist with bathing and shaving. He is again able to eat, some days better than others. He has been back in a wheel chair most of the last 3 weeks. The wheelchair was recommended and ordered by hospice.

When my husband’s regular hospice caregiver went on vacation, there was a breakdown in the communication of what services he had been providing. As a result, my husband was not being shaved or shampooed because the hospice substitute thought the CNAs were doing that, and the CNAs thought hospice was still doing it. (He did receive a bath during that period). After 6 days, and my venting frustration and concern, the CNAs stepped in. It took 3 phone calls over the next 4 days to get hospice to find the problem and return to their previous care level. All is well now, but there have been times when I have been so weary with having to bull-dog my husband’s care, that I could just bawl. It should not be this difficult to receive consistent, competent care. And, of course, if I were not there several times a week, I would be unaware of any problem.

So, we are back at Point A: you are still your loved one’s advocate, but never forget that you are your own advocate, as well. A dear friend just told me to remember that having an argument and losing my temper at them is hard on me. She gave me a good reminder that the smaller things are just not worth a rise in blood pressure and another year off my life. Take a deep breath and keep your battles in perspective. By now, you know what activities or people relieve your stress. You know what activities or people bring you a sense of calm or happiness. You know what activities or people take your mind completely away from this day’s challenges. Utilize them. Fight for yourself as much as you fight for your loved one. Never give up on either one. Carpe diem!

Since I put my husband in full-time care, there have been two instances when I needed care myself. This has been an odd experience. I have become so used to taking care of him, and sharing coping mechanisms with others, that I felt really awkward asking for and receiving care for myself. Part of me kept saying, “Wait! You are strong enough to handle other things. You don’t need help. You can do this on your own.”

But sometimes, we really can’t handle it all by ourselves. I have great family and friends, who made it seem as if they were doing me a favor when they helped with transportation , meals, visits, flowers and reading materials. They were all very gracious, so I gratefully accepted. And that’s what life is all about, isn’t it? Helping others when we can, and allowing them to return the favor, then paying it forward as much as possible. No guilt, no embarrassment, just living that Golden Rule by doing what we can when we can. And saying, “Thank you” for the privilege.

In July of 1990, our daughter married and our son joined the Army. For a few days, I felt the weight of the world lifted off my shoulders, since they were on their own paths now, and if anything happened to us, they would be able to continue on their own. Then Saddam invaded Kuwait, and our daughter needed serious surgery. I quickly learned that you never escape from that weight and worry, even if the only thing you can do is be supportive from afar.

Silly me, I thought that when I placed my husband in full-time care the end of October, that I would be relieved of the stress and worry of the past few years. How quickly we forget!

No place is perfect, and definitions of perfect vary. I had placed my husband in three different temporary care facilities over the last two years. I have no way of knowing what transpired between drop-off and pick-up one or two or four weeks later. He looked fine when I left, and was the same when I returned to spring him. I do know that while residents of memory care facilities are in a lock-down facility, there appear to be no such restrictions for socks and towels. With hidden Houdini-like talent, those items found ways of disappearing from the most Alcatrazian of facilities.

The full-time Memory Care center I chose for my husband was one in which he had stayed before, was conveniently located, and yes, cost less than most of the others because it is a flat-fee facility, not a rising care-level-fee facility. But I was impressed with the staff, and with the light and layout of the building.

One day I arrived at lunch and saw my husband hunched over as if he were dozing. When I reached him, I realized he was trying to lap Jello and soup out of their bowls. The CNA (Certified Nurse Assistant) had not given him any utensils, “because he doesn’t use them anyway.” They were helping other residents eat, but chose to let my husband lap his meal like a dog. I was furious, cleaned him up, got a spoon and showed him how to use it, and he fed himself the rest of his meal. Sometimes his shirt would be buttoned one button off. His pants were often wet when I was there. He would be minus his belt or his glasses. Each time I noticed something, I spoke to a CNA, and/or the director, who was appalled and promised changes.

During his first 3 weeks there, I noticed that sometimes he hadn’t been shaved. After talking to management, I learned that they only shower 3 times a week, and shaving is done then. OK, I can deal with that, especially since I found that this is the norm at other facilities also. The problem was that he wasn’t being shaved every time, and he wasn’t even being showered the 3 times a week. The worst was 6 days without a shower. The director was not there when I discovered that, but I arranged interviews with two other facilities as soon as I got home. When I returned , there was a new director. I gave that director an ultimatum that I would leave by Christmas if changes weren’t made. There were further, minor incidents, but he was responsive, care improved, and I chose not to move my husband.

That facility is now under new management, and will soon institute their fourth director since October. Only two of the original CNAs are still there, but they have been wonderful. Any facility, no matter how big or small, no matter how new or old, is only as good as its worst CNA, and as its director’s response to you. You have to advocate for your loved one, dropping in at any hour of the day (or night), sitting through meals and activities, and observing. More and more of these facilities are being built, drawing from a dwindling pool of low-paid and highly stressed workers, who risk back injuries every time they have to lift a resident. You have to be there to make sure all is well, to thank the ones who are doing a good job, and to educate staff on what you expect. Then you can relax a bit, and enjoy the chocolate you have earned.

In discussing this with friends who have used other facilities, I do not think my experience is unique.  Our advocacy is needed, no matter how highly the facility is recommended.  The weight has not been lifted from our shoulders, just shifted to someone who helps share the burden.  So visit, complain, praise, get to know the staff, and find something to laugh about every day.

 

This is the first chance I have had to write since I placed my husband in full-time memory care the end of October. Which is the answer to the title. I have been so busy that there has been little time to think and very little time to contemplate being alone. Do I miss him? There were moments during the first month when I looked up and was surprised that my husband was not sitting in his usual spot. But they passed quickly, after the initial jolt, because there was always something else that needed doing. By the time I got to bed each night, I was so tired that I dropped off before I could read more than a few pages of my bedside book. I had expected to feel like a pebble rattling around in an empty box. The only times I have felt like that were after returning from a full-house Thanksgiving in Texas to my empty house, and after my houseful of family left after Christmas. I miss the person I married, but I don’t miss having to deal with what he has become.

So what has helped? The first thing I did was paint the walls and have carpet replaced in the room he had been in. This was necessary because of his condition the last three years, but also very therapeutic, as a simple way of turning it into something new. I also had a deadline, so had to work long hours to finish on schedule.

By the time that was finished, the holidays were close enough that I remained super busy decorating, traveling, cooking, preparing for company, then de-decorating afterwards.

That was followed by knee surgery. This is NOT a recommendation for alone-hood survival, though it has certainly put my mind elsewhere, with exercises, pain management, and the new snail’s-pace me as I regain mobility and strength. By the time I am back to normal, it will have been more than three months since I placed my husband, and the most critical adjustment period will have passed.

There have been many visits to the facility where he now resides, and continued advocacy for him, which will be the subject of a later essay.

I was lucky in that the time of year kept me more occupied than normal. In lieu of the busyness of holidays, other suggestions would include: Getting out to do something you could not do while being a full-time caregiver, whether that is taking a walk, going out to lunch or dinner, traveling to see family or friends, or simply using that uninterrupted time to work on a project at home. Catching up on written correspondence or calling friends. Sleeping in. Staying up late to finish a chapter in a good book or to binge-watch a TV series. Enjoying the freedom to browse as long as you want in a store. Taking a drive for no other reason than the pure pleasure of seeing a change of scenery.

Do something all by yourself, without having to respond to the same question every thirty seconds, without having to pack emergency supplies, without having to keep someone else engaged, taking time to breathe calmly, with only your inner voice for company, and listen to what that voice tells you. You alone know what you felt deprived of while your loved one was under your care. Feed that empty mouth now, and start getting back out there, as a viable person with a different description than “Caregiver”. Find yourself again.

When asked what would make me put my husband into full time memory care, my response was always: 1) if he began wandering away from the house and I was worried about his getting lost, or 2) if he turned violent. He goes into full time care tomorrow (October 21), and neither of these things has happened. So what has changed?

1. He has fallen three times in the past 5-½ weeks. He was stunned initially, then finally figured out how to get himself up. He is too big for me to lift. Once, I had to put a chair in front of him so he could use that to pull himself up. Two times he banged himself up a little, though not enough to warrant anything beyond home first aid. My fear is that he will fall while I am out, or fall when I am sleeping and I don’t hear him. I think his falls are caused by the natural regression of his brain’s abilities, and by his gradually weakening state. It’s not that I could not get help if he fell. The key issue is his 24-7 safety.

2. I am drained. No, he doesn’t need constant care, but caring for him is always on my mind. It sounds trivial to say you have been done in by laundry, but I have been done in by laundry. When you have to soak, wash and dry not just the sheets, but also the blankets, comforter and pillow two times in two days, it is a bit overwhelming. He can no longer wash himself adequately. Nor can he brush his teeth. He has forgotten how to use his razor. He feeds himself, but forgets to swallow, so his mouth is beyond stuffed before he remembers to chew and swallow.

3. I am experiencing physical symptoms of stress. If I don’t do something, there will be two of us who need care. I know this needs to be done now, not later, for his safety and my sanity.  That being said, it is still not easy. I have known for eleven years that this day would come. But theory and practice are different beasts. My stomach is in turmoil, I have trouble concentrating because there are so many details to take care of. I walk through the house and realize how different it will be here when he is gone. I feel like a pebble rattling around in a box. I have no idea what the future will bring.

Luckily, my family are very supportive. Many friends have called or emailed to send air hugs.  So the decision is made, and though it is not for the reasons I had anticipated, it is time to turn the majority of his care over to someone else, for both our sakes. Meanwhile, the trees are golden, the sky is blue, and I am lucky we have made it this far.

I eat my peas with honey,
I’ve done it all my life.
It makes the peas taste funny,
But it keeps them on my knife.

How many of you remember this ditty from childhood? I learned it from a book of silly poems and jokes, and remembered it because it was so inanely comical. Turns out, the poet must have known my husband.

As his disease progresses, he regresses. The last few weeks, he has been eating everything with his fingers, though occasionally he reverts back to using a fork or spoon. But lately, he has begun emulating that long ago “I”. Last night he carefully slid his knife under pieces of meat, or carrots, or potatoes, or all three at once, using his fingers to reposition, if necessary, so they would remain in place on their short journey into his mouth. The gravy from the pot roast played the part of the poet’s honey. The intriguing part of the exercise was in watching him line up salad apple chunks, diced celery, and raisins on the knife, then balance them carefully, slowly lifting it off his plate without dropping them. He managed to eat the entire meal using only his knife, with occasional realignment aid from his fingers. Over the teeth, around the gums, Look out stomach, here it comes!

While his manners would not pass muster in a 5-star restaurant, in our kitchen, the guests are carefully chosen and the critics are kind, so I guess his choice of utensil doesn’t matter, as long as the desired result is achieved. And as long as we look for humor and joy, instead of allowing frustration and anger to take over.

I wonder if peas with honey do taste funny…

My husband has found a friend. He stands in front of the mirror, babbling and chuckling to his twin. As twins often do, they have their own language. They entertain each other with two non-sensical phrases repeated over and over, and the syllables ba-de-ba-de-ba-de-ba-de. Who knows, they might be laughing about the current state of politics, or even discussing the latest idiosyncrasies of the rest of humanity. They each seem to enjoy the conversation, and they are entertained. They chatter often, at any hour of the day or night. Sometimes they lie in bed and jabber, just like little boys after lights out.

He (and his twin) laugh a lot, at anything, whether it is funny or not. This is a common side effect of neurological brain diseases such as Alzheimer‘s, and is called pseudobulbar affect (yes, spelled with an “a”), or PBA. Think of it as emotional incontinence. It is an involuntary reaction to inner or outer stimuli. As the Alzheimer’s brain deteriorates, it loses the ability to discern between appropriate and inappropriate behavior. Much like a tic, or repetitive hand movements, the action is beyond the control of the patient. There are medications that one could take to stop or slow it if it becomes a problem for your loved one. Or you can laugh along with him, and reap the health benefits of laughter.

Did you know that there is a global movement called Laughter Yoga? It was founded in Mumbai, India, in 1995, and contends that deep breathing exercises combined with group laughter are very beneficial in reducing stress and lowering blood pressure. Even if you don’t find the current session funny, pretending to laugh or guffaw along with the group is supposedly as good for you as a real, spontaneous response. Perhaps my husband and his twin are on to something.

People ask me how my husband feels, or how he did in memory care, or what does he think about during his days. Well, since he is nearly non-communicative, all I can offer is an educated guess. I have to attempt an interpretation based on context, which is possibly inaccurate nearly as often as it is accurate. But we try.  As do all of us who are dealing with this disease. He laughs as often as he responds with his crutch phrases. We have all heard that laughter is the best medicine, and it beats crying, so I guess I’ll try laughing along and see if it helps reduce my stress. It’s worth a try.

I placed my husband in temporary memory care while I escaped for a month, to multiple destinations. He did not appear to recognize me when I returned to spring him. No surprise–he hasn’t said my name in several years, and I have wondered many times if he has any idea who I am. He does accept that I am his “person”. He did return home and to his old routine without any disorientation.

Did I worry about him while I was gone? No. I knew he would be cared for and would be safe. Did I think about him? Of course. I did make one mistake. I called a couple of times to see how he was doing. Each time, they appeared to be having difficulty with some aspect of his care. We discussed alternative diets to help decrease his pocketing (storing food in his cheeks without swallowing it–a common problem with this disease). Another time, they seemed dismayed that he was wetting the bed at night. I asked if he could be wearing an undershirt to bed and tucking it into his diaper, which turns it into a wick for the moisture. Yes, he was. It also took two weeks for them to find the gloves and wipes which I had placed in his designated drawers, due to different staff than the one who helped me move him in. Sigh. So while I didn’t worry, I shouldn’t have called, because I did fret unnecessarily about how his paid caregivers were managing.

What is it with care centers and glasses? Last time, I had to check several residents before finding my husband’s glasses on one of them. (All the glasses I looked at had dirty lenses, by the way). I have since labeled his with name and phone number, with a very visible, but unobtrusive, tag on the side frame piece, between eye and ear. In spite of that, I found him wearing someone else’s glasses this time. His were in his case in a drawer by his bed, filthy. The worker’s comment? “Oh, aren’t those his? I wish everyone would label their things like you do.” Seriously? What good did it do, other than retrieving them easily before going home? This has been a major issue at two out of the two centers where I have placed him. I have to assume it is also an issue at most of the others. Particularly with something as important as eye wear, wouldn’t you expect that experienced care workers would make sure those are labeled upon arrival? How many residents of how many facilities cannot see faces, TV screens, or the floor because they have the wrong glasses on? How many have fallen due to that reason? And why, for goodness sake, does no one think to clean the damn things? May I suggest that instead of sitting and reading trivia questions to a circle of residents who cannot even understand the words, much less the answers, that you perform this simple service of making sure they can see properly. And if someone is looking for a volunteer project, cleaning glasses is more beneficial than bringing yet another bottle of lotion.

When I picked him up, he was wearing someone else’s unlabeled undershirt, while his labeled ones sat in his drawer. We were short towels and washcloths (also labeled). In the last care center, there were towels and undershirts that we never found. This time, it was towels, washcloths and socks. I am grateful that those were simple, inexpensive items, but am mystified that even with every item labeled, some were still lost. Neither of these facilities were more than half full, which should have simplified laundry day. Perhaps here is a burgeoning new engineering field– devising a better way of keeping track of residents’ possessions.

Would I leave him again? Definitely. In the grand scheme of things, these were minor issues. He was fed well, kept clean, and offered activities to keep him busy. I am very grateful to the centers who offer this service, and to all the cheerful staff who did a great job. We at-home caregivers have to have breaks, and temporary care is a good alternative to full-time care. Advice to those of you considering it? Label, label, label. Talk to as many of his caregivers as you can, physically showing them where his supplies are. Or tape a labeled description of each drawer’s contents on its front. Type out a memo telling of his usual schedule, likes and dislikes, and behavioral quirks, and make copies for the front desk as well as his caregivers. Then go, go, go and take care of you. And next time, I will wait for them to call me. They are paid to figure out solutions to problems, and I will let them call me if they can’t, so I can take a complete vacation.