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SCROLL DOWN FOR JOAN'S NEW BLOG - FIGHTING FOR OUR SPOUSES

 

 

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JOAN’S BLOG – THURSDAY, SEPTEMBER 25, 2014 – FIGHTING FOR OUR SPOUSES


Before I begin, please allow me to take a moment to explain something about Alzheimer’s Disease. Those of us dealing with it are aware of this aspect, but I would like to wake up the rest of the world to the hidden, lesser known, dark facet of what the general public views as a “memory disease”, and that is violence. It is not a “memory disease”. It is a BRAIN DISEASE. It destroys every part of the brain, piece by piece. Although each patient is different, and not every patient will experience every symptom, many fall victim to aggression and violence. As their brain deteriorates, they may lose the ability to communicate what is bothering them; their perception of threats may become skewed and exaggerated; their confusion may increase. Imagine perceiving a threat, being unable to communicate your fear, and being confused about what is happening around you. When this occurs with a dementia patient, they often strike out verbally and physically.

Coincidentally, while I have been dealing with this issue with Sid for the last month, I have noticed that the message boards have been filled with members facing the same problem. Because of one crisis after another with Sid, I have been unable to adequately respond to message board posts.

This blog will give you a glimpse of what I have been facing, and how I have dealt with it. Perhaps my experience will help you get through yours.

Each time Sid experiences a downturn or crisis during this last leg of our journey, I think that it could not possibly get any worse, but I am proven wrong time and again. Most recently, our situation, as I mentioned above, has mirrored the current discussion on the message boards relating to handling (mishandling may be a better description) of aggressive issues.

Hospice determined that my husband is in the end stages of Alzheimer’s Disease. He has become extremely restless. Moving back and forth in his wheelchair has not been a problem, as the Alzheimer unit of the nursing home is locked and designed for pacing and wheeling. Constantly trying to get out of his chair has been a problem, as he is unable to walk on his own, and has fallen once. In addition to the restlessness, he has become more physically abusive to the staff and anyone in his path. Almost every night, I was getting a phone call informing me of another incident of hitting, punching, or kicking.

If your spouse is in a facility, you will recognize my frustrating, stressful situation of trying to get all professional parties involved in Sid’s care together in one place to discuss how to handle the medication designed to alleviate his aggressive symptoms. Even if your spouse is at home, it is still just as difficult to get all parties together and on the same page related to care and medication. In my case, there was the Hospice doctor, Hospice nurse, Nursing home Director of Nursing, unit nurse, and outside contracted psychological service’s doctor and psychological nurse practitioner. Nowhere in that list do you see – WIFE. No, all of these different professionals played phone tag with one another, changed his medication, then called me after it was done to tell me about the decisions and changes. I know that each situation is different, but I am sure you recognize some similarities to your own experience.

As you can imagine, this did not go down well with me. I expected to be part of the team; I expected to be consulted BEFORE changes were made. It is my right as Sid’s wife, advocate, and the person who cares most about him in the world, to be part of the decision making.

The first day I went to see Sid after the medication change, I literally almost fainted. He was slumped over in his wheelchair, completely unresponsive, unable to talk, eat, or lift his arms. I fed him by opening his mouth and pushing the food into it. When I finished feeding him, I was shaking, holding his head, and sobbing. How did we ever end up like this? How?

The desk nurse, who can only do what she is ordered to do, was sympathetic, and told me that the director of nursing was ordering Hospice to reduce the medication. It took days of relentless phone calls by me to all parties involved, a scolding by one of the professionals (NOT a Hospice professional) that basically I should stay out of it, and let them do their job, constant insistence on my part that we all meet together, before I finally had a meeting with the main parties involved. I stressed that I wanted to be part of the TEAM; that I wanted to be part of the decision making; and that I wanted to be kept informed on a weekly basis with a direct phone call from at least one of them.

We are now going on the 4th week of medication musical chairs. He is no longer semi-comatose, and is eating on his own. However, his aggression is creeping up. Our goal is to keep the aggression down, without drugging him into a stupor. I have been told that due to advancing dementia, it may not be possible to completely eliminate the aggression.

This situation has not played well with my emotional health. I cannot help looking back at who we were as a couple, who he was as an individual, without dissolving into tears and depression at what we have become.

So I continue on. I make phone calls; I advocate for him; I insist on meetings; I visit him and hold the once warm, strong hand that has calmed, supported, and held me almost my entire life. There does not seem to be anything else I can do at this point.

To those of you who are dealing with the same aggression and medical frustrations, I can only urge you to fight for what you feel is best for both of you.

MESSAGE BOARD: Joan's Blog - Fighting for our Spouses

Feedback to joan@thealzheimerspouse.com

©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken

 

JOAN'S NOTICE: SEPTEMBER 22, 2014 - As I navigate this last leg of our Alzheimer Journey, there is one crisis after another with which I must deal. It is taking all of my time and energy, which is why I have not written any blogs in almost 3 weeks. I was in the process of writing a new one this afternoon when the phone rang - Sid's unit nurse reporting another issue, although thankfully, this one was not serious. In between the phone calls to and from unit nurses, hospice nurses, pshychological personnel, and now, a lightening storm, which necessitates the shut down of my computer, I do promise that a blog is forthcoming. Thank you for your patience and understanding.

 

JOAN’S BLOG – TUESDAY, SEPTEMBER 2, 2014 – A SEISMIC SHIFT

About three weeks ago, an event occurred in my life that was so mind altering, I could actually feel a complete seismic shift in my entire attitude. It completely changed the way I view myself and my new involuntary single life .

Three months before this occurrence, I saw a concert advertised that I desperately wanted to attend. It was in Orlando, which is a two hour ride from where I live. That would mean, besides going to the concert, I would have to get a hotel room, because there was no way I could drive that distance late at night in the pitch black darkness. I can barely drive down the street in the dark. I was so excited about getting the opportunity to see Blake Shelton perform, as I am a huge fan. Unfortunately, none of my friends shared my enthusiasm, and I was met with a chorus of resounding “NO’s” from whomever I asked. I was so disappointed because it was unlikely that his tour would be that close again. I searched and searched the database in my head for someone who would consider going with me, and came up empty.

When I mentioned it to my sister and my son, they both told me to go by myself. What? I have never gone to a concert in my life by myself. One does not go to a concert by one’s self. The daytime drive to Orlando did not bother me, as I have done it many times. Staying in a hotel by myself did not bother me. I have done that many times. But going to a concert alone?  No, that is not something people do. Concert attendance is for couples, friends, and groups, not singles. Sid and I attended countless concerts during our years together. We went to concerts we both wanted to see. I went to concerts I did not want to see to please him, and he went to concerts he did not want to see to please me. We went with each other and we went with friends. We enjoyed most of the concerts, walked out on a few of them, and saw some singers multiple times. But we certainly never went alone. What fun would that be?

As the weeks went by, I felt more and more disappointed. I wanted to see Blake Shelton, and I was very upset that I could not go. Then it happened. The seismic shift in attitude was so intense, I could feel the earth move under my feet.  Suddenly I said to myself – I want to go to this concert. I want to go. ME. What do I mean – I can’t go? Why should it matter to me that other people do not want to go? Why should what I want to do depend upon what someone else does or does not want to do? Why should I be denied the opportunity to see a concert I want to see just because someone else did not want to see it?  It was at that moment that I truly started my new single life. It was okay for me to attend an event because it was what I WANTED TO DO, and since my husband was no longer able to participate in this part of my life, what I wanted to do was really all that mattered.

Instead of being happy that I was moving forward with my life, I was sad and angry that he was being left behind. No matter how I viewed the situation, it was not fair that my beloved husband of 44 years was sinking deeper into Alzheimer’s Disease, and I was moving forward without him.

However, the sadness and anger did not stop me. I bought myself a ticket, booked a hotel room, and went to Orlando. By myself. I enjoyed every minute of the 4 hour show, which included two opening acts and a talented emcee who played his own music in between acts. After two hours of foot stomping, rollicking music, Blake Shelton came on stage and performed by himself for two straight hours. I was in Heaven. Literally, as the only ticket I could get at that late date was a resale so high up in the rafters, I was dizzy.

When it was over, I will admit that I felt lonely leaving the arena by myself. I did not like getting into the car and driving back to the hotel alone. Yes, I absolutely would prefer to go to a concert with my husband. Since that is no longer possible, and will never be again, I would prefer to go with a friend, but I can assure you that being alone will never again stop me from going to a concert I want to attend.

What my solitary concert experience taught me was that I am, although not technically a widow, a single woman who is in charge of her own destiny. I do not need to depend upon others to be happy. I can and will enjoy myself on my own terms. This was not an easy, quick realization. It took years, so if any of you are trying to reinvent your lives as a single, do not expect it to happen overnight. As with everything related to learning to live with Alzheimer’s Disease, it will happen on your own timetable in your own way. I also learned that, for my own mental health, I NEED to find enjoyable activities to take me away from the illness, depression, and near death of the nursing home in which my husband has been sentenced to live by the Alzheimer Devil.

MESSAGE BOARD: Joan' Blog - A Seismic Shift

Feedback to joan@thealzheimerspouse.com
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken

 

JOAN'S LABOR DAY WEEKEND NOTICE - AUGUST 29, 2014

Do caregivers get a rest on Labor Day? Probably not. It is a 24 hour a day, 7 day a week job, unless you are fortunate enough to have paid help or even more fortunate to have unpaid family help. Whatever the case, I hope you do find some time during this weekend to rest. My own plans are rather surprising and different for me. Please be sure to tune in Monday to read the blog about my newest “first”.

 

 

JOAN’S BLOG – WEDNESDAY, AUGUST 20, 2014 – DESPERATELY SEEKING HELP

I am not very good at this. The “this” of which I write is watching my beloved husband of 44 years, who is now under Hospice care, slip deeper and deeper into the abyss of Alzheimer’s Disease.

When I visit with him, although still happy to see me, he now has little affect, is perpetually fatigued, and has difficulty organizing his thoughts enough to be able to answer a question coherently. He is so exhausted that most afternoons he asks to be put into bed, so he can take a nap. When settled into bed, he looks over at me with sad eyes and tells me how much he loves and misses me. With all the strength I have left in me, I hold back the tears and quietly tell him that I love and miss him too. Two days ago, as I was sitting by his bed, I added – But I can’t take care of you anymore. To my amazement, he softly said – I know. The countless pieces of my already shattered heart were pulverized into dust when I heard him speak so lucidly. Somewhere inside his Alzheimer imprisoned brain, my Sid still exists. It was my Sid who spoke those words, not the angry, irrational, confused person Alzheimer’s Disease has left in his place. It cuts deeply into my soul to glimpse a tangible piece of who he used to be. Is it a welcome relief or another jagged knife piercing into a wound that does not heal? Would it be better to never see a piece of the old Sid than to catch a fleeting glance of who he was and will never be again? I have no answers to these questions, only deep emotional pain.

Whether asleep at night or awake during the day, my head is filled with nightmares of the total devastation I will experience when he takes his final breath. I cannot imagine my world without him in it. I cannot imagine my husband being dead.

Conversely, my rational mind wants this pain and suffering to be over for him. No one deserves this staggeringly ghastly disease that destroys both patient and caregiving spouse.

Why is this so difficult, I ask myself. After all, I have been doing this for over 10 years now, haven’t I? I have endured his personality changes, mood swings, temper tantrums, violence, confusion, forgetfulness, misunderstanding, loss of cognitive function, loss of physical abilities. I have read all of the books. I have read all of the “end stage” stories you have shared on the message boards. I know that Alzheimer’s Disease takes no prisoners. It is a long, slow, torturous death, but death is always the outcome. None of my knowledge or experience is helping me now. I am no good at this.

In the midst of trying to cope with the impending death of my husband, I have been trying to take the expert’s advice and build a single life for myself. I have been looking for activity based groups to join, events to attend, people to meet. I have been repeatedly asked by well meaning friends if I have made a decision on moving “after” and where that will be.

It has all been too much for me, sending me into a deeper well of depression than I have been. In desperation, I reached out to the Hospice Social Worker, telling her that I cannot do this; I don’t know how to do it; I don’t know what kind of help I need, but I need help. She told me that Hospice offers a support group (I’ve had my fill of support groups – I knew that was not what I needed). They also offer one on one grief counseling. That was it! That is what I needed. I did not “click” with the psychologist I saw two years ago, and I found her to be minimal to no help at all. But I was willing to give the Hospice counselor a try.

My first meeting with her was on Monday of this week. I found her to be warm, nurturing, knowledgeable, understanding, and extremely helpful. In a little over an hour, she had me feeling better than I have felt in years.

Did she give me a magic bullet that I can share with you to help ease the pain of those of you who are at this stage with me? No, she did not. We talked about feelings of guilt, conflict in wanting him to stay and wanting this to be over, love, loyalty, my right to a life, trying to do too much at once during a time of “limbo”. In the end, I was given a coping prescription until I meet with her again in two weeks. She encouraged me to stop dwelling on what is to come; to stop making myself sick about the inevitable, and just live one day at a time. She strongly suggested that I do not make Sid the entire focus of every day. She said that I should make sure he is well cared for, visit a few times a week, but do not obsess over his fate. Get up in the morning, and think -What am I going to do TODAY – for ME? She gave me a list of 3 groups she thought had activities that would interest me, and urged me to try each at least once.

I am making an extreme effort to follow her advice, particularly the part about not obsessing and dwelling on what is to come. Relieving myself of that burden has already helped me feel better.

If any of you share my stage of the journey and/or my feelings of conflict and depression, I hope this blog has been of some help to you. If you do have Hospice social workers available, I urge you to utilize their services. These people “know their stuff”.

MESSAGE BOARDS: Joan's Blog - Desperately Seeking Help

Feedback to joan@thealzheimerspouse.com
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken

 

JOAN’S BLOG, MONDAY, AUGUST 11, 2014 – ASSISTED LIVING VS NURSING HOME- A PRIMER

This blog was prompted by a recent discussion – “Looking for Placement – Help” on the Message Boards concerning finding an appropriate placement for our spouses with Alzheimer’s Disease.

Let me begin by saying that this is a complicated matter. There are federal guidelines regulating nursing homes and assisted living facilities, but generally each State has different rules and regulations. You will have to find out the rules in your own State on your own or with the help of a Geriatric Care Manager (more about GCM’s later in the blog).

I am not an expert in this field, but I have had experience with nursing homes and Assisted Living Facilities in Rhode Island, Massachusetts, and Florida. I would like to offer you some basic information that is very important to understand before you look for placement.

ASSISTED LIVING FACILITIES:
Criteria for qualifying for Assisted Living:
Your spouse must be able to transfer with some assistance (no lifting) from the bed to the walker; from the chair to the walker or wheelchair. Some Assisted Living facilities have advanced licenses that allow them to be more flexible in their ability to accept less mobile residents, but you must find out EXACTLY what they are willing to do BEFORE you place your spouse or you are going to be called and told to remove them because they are too difficult for the staff to handle physically.
Violence and Running -No Assisted Living Facility will keep a violent or habitual “escaper”. Understand this in advance if your spouse has such tendencies. Many Alzheimer Spouses are so stressed, exhausted, and anxious by the time placement is upon them that they do not clearly understand the restrictions and are later surprised to be faced with eviction.
Diabetics -No Assisted Living Facility with which I have dealt will do daily blood monitoring of diabetics. Nor will they administer insulin. The reason for this is that a “skilled nurse” is required to take blood, even if it is only with a finger stick, and ALF’s do not have the staff for that type of work. ALF’s have what they term, “no stick” policy. If your spouse is a diabetic, you will be told that you have three options. The first is that the staff will “remind” your spouse to take his/her own blood at the designated times, and administer his/her own insulin. The second is to hire your own nurse to come in and take the blood and administer insulin if needed. The third is for you to come at the designated times to take the blood and administer insulin.
Doctor Visits – Although all facilities have vans with which to transport patients to doctors, YOU must choose your own primary care and specialists. No medication; no tests; no changes; nothing can be done to your spouse without the primary doctor’s approval. If there is a crisis, your spouse will be transported to the nearest ER at your expense.
Payment Responsibilities
No matter the outward appearance, from basic to ultra glamorous, the one most important fact to know about an ALF is that it is an APARTMENT that you MUST PAY FOR ON YOUR OWN. It is no different than moving your spouse from your home or apartment to a different apartment. Rents vary widely from State to State, from facility to facility. I have encountered rents as low as $2000 a month and as high as $10,000 a month. You must provide the furniture, every single personal item from toiletries to adult diapers to talcum powder. When your spouse runs out of toothpaste, deodorant, personal wipes and latex gloves (used by the staff to “assist” your spouse), YOU must provide replacements. It is possible that some of the more expensive ALF’s provide gloves for the staff, but I have not encountered one. Actually, these items may appear in the bathroom, and you may THINK they are being provided, but rest assured, they will appear on your monthly bill.
Level of Care: All Assisted Living Facilities have a payment schedule for level of care. There are usually four levels, and the fees are based upon the amount of care needed and the amount of medications dispensed. The following are examples. Amount of money and type of care provided are samples from what I have encountered, but it is VITAL that you find out what level on which your spouse is placed and the fee for that level. Check back often, because as your spouse declines, the level of care rises as does the price.
Level One - $250 per month IN ADDITION to the rent. Usually minimal to no transfer assistance and a minimum amount of medications – 2 or 3

The amount of money per month increases with each level. In the Assisted Livings I have dealt with for my parents, then my father alone, the maximum fee for the highest level of care (Level Four), was $1200. Remember, that is in ADDITON to the rent.
Example of monthly costs:
                         Rent - $3500
                         Level of care - $900
                         Personal Items (diapers, wipes, etc) -$250
                         Total: $4650

MEDICAID DOES NOT PAY FOR ASSISTED LIVING. DO NOT BE FOOLED INTO THINKING IT DOES. Medicaid will pay for a portion or all of “level of care” if you qualify, but WILL NOT PAY FOR RENT OR ANYTHING ELSE.   

However, Long Term Care Insurance DOES pay for Assisted Living. Not without a fight, of course. But they will eventually pay after many evaluations by their own “specialists”.

So what are you getting for your money? Assisted Living means exactly what it says – Assisted. The resident does not have to cook or clean. Usually 3 healthy meals are provided in the dining room each day. The apartment is cleaned weekly. The resident is given assistance with shaving, bathing, and dressing. But remember, the more assistance needed, the higher the level of care fee. Activities are provided during the day, and often there are “field trips” to restaurants, movies, theaters.

Memory Care Units in Assisted Living Facilities 
This is my personal opinion, based upon years of observation in a variety of facilities. I would NOT consider placing my spouse in an ALF that did not have a separate Memory Care Unit, no matter what the Sales Manager tries to tell you about how appropriate their regular facility is for Alzheimer patients. These memory units are locked and staffed by professionals who have had at least some training in dealing with Alzheimer patients. The activities are based upon research related to Alzheimer’s Disease, and are geared specifically to the needs of those with Alzheimer’s Disease. The staff knows the basic tenets of Alzheimer’s Disease – divert and distract, rather than argue.  The assistance provided is usually of a higher level than in the regular section of the ALF. You will be billed accordingly.

NURSING HOMES
This is a completely different animal, as the saying goes. In order to qualify for a nursing home, your spouse must be deemed by a physician to require around the clock “nursing care”. I cannot tell you with certainty what all of the criteria are, but I can give you probabilities. If your spouse is immobile, and needs lifting; is diabetic and unable to care for himself/herself; or has another debilitating medical condition, they may qualify for nursing home care.
Payment Responsibilities
Unlike an ALF, you do not have to provide ANYTHING, except clothes and whatever personal items you wish, such as pictures, a portable radio, magazines. All furniture, toiletries, diapers, wipes, gloves, and in our case, even a TV, are provided by the facility. The costs range from $6000 to $12,000 per month. MEDICAID DOES COVER NURSING HOME CARE, but they will fight it at every turn because of the cost. Usually, if your spouse’s physician writes a strong enough recommendation, Medicaid will cover it, minus your spouse’s social security check. (Spousal Diversion programs allow you to keep enough of that check to cover your shelter expenses).

If you are paying privately, the restrictions for admission are not as stringent as when Medicaid is involved. The simple fact of the matter is – Money talks. If you can pay, and the doctor says nursing home care is needed, your spouse is in. I speak from experience, as I know how I was treated at different facilities when I was looking for placement for my father, who was private pay, and how I was treated when looking for placement for my husband, who is on Medicaid.

The problem with most nursing homes is that they DO NOT have separate locked Alzheimer Units or specialized activities for Alzheimer patients. Every State and every facility is different, and this is beginning to change, but most generally, Alzheimer patients are placed within the general population of the Nursing Home. I was lucky to find one that was Medicaid Approved and had a separate locked Alzheimer Unit.
Doctors
When your spouse enters a nursing home, you must choose one of their staff doctors as his primary physician. These doctors assume all care for your spouse, and see them on a regular basis. In our case, the doctor sees Sid on the average of once a week, but often he checks on him when he is seeing other patients. All blood tests, x-rays, and other medical tests are done on the premises.

If you have the funds, I HIGHLY RECOMMEND hiring a Geriatric Care Manager to do the leg work for you. They are specialists in their field. If you understand the guidelines as I have written them, you will be equipped to ask the right questions, so he/she can find you the most appropriate placement for your spouse. As with hiring any professional, I would go with recommendations from people who have used that professional and been satisfied with their work.

What I have outlined is basic, simple, and different in every State, but it will give you a starting point and questions to ask when researching a facility for your spouse. One of the most important facts to keep in mind is that every State and every facility is different. I have given you my experiences and knowledge gained from three different States and 10 different facilities.

MESSAGE BOARD: Looking for Placement - Help

Feedback to joan@thealzheimerspouse.com
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken

 

JOAN’S BLOG – AUGUST 1, 2014 – UNPREPARED

It was October, 2006. “He has Alzheimer’s Disease.” From the moment the neurologist specializing in memory disorders uttered those words to me, after 3 years of frustration and misdiagnoses, I prepared myself for what was ahead. Sid and I had just moved to Florida to “semi-retire”. Instead of planning travel adventures and seeking part time jobs, we went to a Certified Elder Law Attorney to plan our “advance directives”. In normal speak, that means that we had living wills, health care powers of attorney, durable powers of attorney, and our wills drawn up and signed.

I then went about learning everything I could about Alzheimer’s Disease.  I read all of the books that described what was ahead for Sid, how to handle the behaviors that the books said he may or may not exhibit.  I immersed myself in the Alzheimer World, advocating, learning, teaching, starting this website, joining a support group, and becoming part of a social group of Alzheimer couples.

For years, as an Alzheimer Spouse, I endured the unimaginable – the gentle, loving, kind man I married turning into a violent, rage filled stranger. I was dumbfounded. Alzheimer’s Disease was all about memory loss, wasn’t it? That is what TV ads and articles had led me to believe.

There was cognitive decline – the electronics whiz on whom I depended to hook up, fix, understand, and explain every piece of equipment in our house was having difficulty working the TV remote control. The man with whom I had discussed and debated politics for 40 years could not explain why he did not like a particular politician’s stand on issues – he simply said – “He’s an idiot”. When queried as to why, he answered, “He’s an idiot.”

Violent mood swings became the new normal in our house. In the early stages of the disease, he often recognized, 12-24 hours after an irrational rage filled rant, that he had been unreasonable, and he sadly and quietly apologized, only to erupt in another irrational outburst minutes later. I felt like a battering ram for the Alzheimer Devil. What was this coming at me from all angles? Alzheimer’s Disease was all about memory loss, wasn’t it? That is what the TV ads and articles had led me to believe.

The worst part of trying to deal with this monstrous disease that had taken over my beloved husband was the advice I was given by my social worker. Do not discuss or argue with him. Divert his attention, distract him, and handle all situations on your own. What? Not discuss and compromise as we always had? But, I argued with her, if I did as she asked, I was destroying the very foundation of my marriage. She informed me that I either learned to deal with him differently than I had for the last 3 decades of our life together, or I was destined for constant battles, stress, and anxiety. The disease, she told me in what I thought was rather harsh terms, was going to take my marriage and my husband as I had known them, and I was going to become more and more a caregiver and less a wife. ????????  What was she talking about? I could not accept it. As those of you who have followed my blogs know, I fought against her advice; I fought for my marriage and husband; I fought until I almost died, and finally, Alzheimer’s Disease won. It did take my marriage and husband, and I did become a caregiver rather than a wife.

Still, through it all, including his placement in a nursing home one year ago, I continued to assume that his decline would be slow and steady, and when the end was near, I would be prepared.

Ah, but Alzheimer’s Disease is sneaky and cruel. One day last month, he was as “healthy” as could be described under his circumstances. He was wheelchair bound, physically disabled; was being treated for diabetes, high blood pressure, severe knee and back pain, and a host of other ailments. But he was still considered “stable”. The next day he was rushed to the hospital for an uncontrollable high heart rate, where he remained for 3 days. On the fourth day, he was sent back to the nursing home on medication to control his heart rate, and on the next day, he was under Hospice care.

Suddenly, I am being told by the Hospice nurse that he has entered the end stage of Alzheimer’s Disease, is declining quickly, may remain in that stage for 6 months to a year, or a sudden heart issue could take him at any time. I am being asked the name of the funeral home to call when the time comes. I could not have been more shocked or unprepared if I had been hit by a bolt of lightening.

My Sid could die at any moment. NO! That could not be possible. NO! I was shaking from head to toe. I could not think or function. How could this have happened so fast? How could I face his death? I could not. I was paralyzed with fear and grief, a condition in which I remained for the entire month of July.

The next day, my dearest friend drove two hours from her home in Miami to be with me. I was close to hysterical, and barely functioning. Two days later, my sister arrived from Chicago to spend 4 days with me to help me make arrangements. I never could have done it alone.

He is perpetually tired and confused. He often wakes up in the morning not knowing where he is or why he is there. Although he usually snaps back to understanding his routine, one night last week, he had no idea that he slept there, and told the nurse to call me to tell me that he was coming home. He did not know, until she showed him, that he had a room and bed there.
 
Overwhelming sadness and disbelief permeates every cell of my being as I hold his hand while he nods off in his wheelchair or when he tells me how confused he is. At this point, I have to question whether he would be better off if he slipped into the oblivion of Alzheimer’s Disease.

I have told my friends and relatives – I understand that I am not the first spouse to go through this; I will not be the last. But when it is happening to me, I do not know how to handle it. I feel as unprepared as if I had never studied a word about Alzheimer’s Disease.

This explains why there have been no blogs, and very little of my presence on the website in July. I have been enveloped in a fog of disbelief and grief. The woman who, for the last 7 years, has tried to educate, inform, and support others on this Alzheimer Journey, fell apart when it was her turn to face the approaching end of her Alzheimer journey.

I am going to call the Hospice social worker for counseling, but I am turning to you, the wisest and most knowledgeable group I know for advice on how to get through this period.

Feedback to joan@thealzheimerspouse.com
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken

 

 

JOAN'S NOTICE - JULY 24, 2014 -

No blogs were written in July 2014, because of a health crisis with Sid that sent me reeling. On July 6th, I visited him, and he seemed as "normal" as he has been, given the circumstances. At 6 PM on July 7th, I received a call from the nurse at the Nursing Home. Sid's heart rate was elevated; they could not regulate it; the paramedics were on their way.

I raced out the door, and was at the hospital less than 5 minutes after Sid arrived. The security guard would not let me into the ER examining room, explaining that I would be in the way while they were "working on him". I still did not realize the gravity of the situation, as I thought he meant that they were taking his vitals and getting him settled. Almost a half an hour later, after much hand wringing and pleading by me, the doctors said I could come in.

Sid was in a hospital bed hooked up to monitors. looking none the worse for wear, in my opinion. However, the doctor informed me that he was being diagnosed with Atrial Fibrillation; they had to try two different medications before they were able to stabilize his heart rate; and he was being admitted.

To make a very long story as short as possible, he was in the hospital for 3 days, readmitted to the nursing home on the 4th day, and on the 5th day was evaluated and accepted on Hospice Care.

I was so shocked and hysterical that I could barely function, never mind write blogs. Hospice was asking for the name of our funeral home, and I had not even made any arrangements. My sister flew from her home in Chicago to my home in Florida two days later to help me make the arrangements.

It is now almost the end of August. Hospice cannot give me a time frame, but they do feel that this will not go on for "a long time". Sometime this week, I plan to discuss "time" with the Hospice Nurse.

I pulled myself together enough in the month of August to begin writing blogs again. They focus on us coming to the end of our Alzheimer journey and my struggle to cope with it.

 

JOAN’S BLOG, JUNE 16, 2014 – ALZHEIMER’S DISEASE ALTERS MARRIED LOVE

Those of you who are just entering this Alzheimer Journey will most likely strenuously disagree with me. Many, but maybe not all, of you who have been traveling this road for a long time will sadly, resignedly agree with me.

When my husband and I first received the Alzheimer diagnosis, we clung to each other, promising that we would weather this storm together, that I would always take care of him, and that we would always love each other. We were strong. We had been through other difficulties in 36 years of marriage. We would get through this together. What we could not know then, 8 long years ago, was that Alzheimer’s Disease is a Category 5 Hurricane that rips through the life of the patient and caregiver, leaving destruction, devastation, and permanent life changes in its wake.

Today, I want to focus on what was to me, and may have been to you, the most surprising and sorrowful aspect of that destruction and change – married love. Alzheimer’s Disease alters married love. I did not want that to be true. I fought against it with every breath I took. But in the end, the truth is – Alzheimer’s Disease alters married love.

In the Relationship Breakdown and Repair section on the left side of this website, I explain that we married our spouses for particular reasons – “Let’s face it – we all married our spouses for particular REASONS. We didn’t just spin a wheel with names on it and choose one. We chose them for their special characteristics that we loved. In that person we chose as a life partner; maybe we saw strength, humor, intelligence, warmth, and kindness. Maybe you liked the rebel, the outsider, the wild one. It doesn’t matter. You had reasons for your choice.”

Unfortunately, as Alzheimer’s Disease advances, it takes with it the personality, cognition, understanding, reasoning, and memories of our spouse. When they no longer possess the special characteristics with which we fell in love, how can our feelings not change? Where there was once vital and exciting conversation with a peer, there is now minimal talking, little comprehension of ideas and discussion topics, and blank stares. Where there was once the enjoyment of shared activities, whether it was a Scrabble game, a day at the beach, a trip around the world, dancing, museum hopping, movie going, enjoying a live theatre presentation, there is now, due to his/her diminishing abilities, very little you can do together. Where there was once shared responsibilities of household duties ( finances, yard work, home maintenance, cooking, cleaning), everything now falls to you, the caregiver. Resentment and exhaustion on your part soon follow.

Passion and intimacy will eventually be replaced by the necessity for you to fulfill your spouses’ personal hygiene needs – showering, dressing, and toileting. It is a brutally honest fact – the desire for sexual intimacy quickly dissipates in the face of changing adult diapers and cleaning the accompanying mess off of walls and floors.

When all these changes occur, so does the married love you once shared. It cannot be otherwise. The person with whom you stayed in love for decades is no longer with you. He/she has been replaced by a special needs child. You will love that child and care for him/her, but there will no longer be romantic love. That was one of the most difficult aspects of this miserable disease’s consequences that has wrought Hell with my emotions.

I mourn the loss of that love and the loss of the man who was the recipient of that love every day that I breathe. Although I grieve deeply for both, I have finally come to accept that this loss is part of the price of Alzheimer’s Disease. This is a fact that no one but an Alzheimer Spouse can understand.

MESSAGE BOARDS: Joan's Blog - Alzheimer's Disease Alters Married Love

Feedback to joan@thealzheimerspouse.com
©Copyright 2014Joan Gershman
The Alzheimer Spouse LLC
2014All Rights Reserved
Under penalty of copyright laws, this information cannot be copied or posted on any website, media, or print outlet, without referencing the author and website from which it was taken

 

 

 

STARRECENT BLOGS:

For Your Spouses with AD - A Resource of Their Own - A wonderful new website for PWD( Persons with Dementia) designed and run BY PWD.- June 2, 2014

Anger - Expressing my anger and outrage at what Alzheimer's Disease has done to my once smart, capable husband - May 12, 2014

On our Own Timetable - How we must adjust to whatever circumstances in which Alzheimer's Disease places us on our own timetable, not the timetable others set for us - March 12, 2014

In our Own Way - How we must adjust to whatever circumstances in which Alzheimer's Disease places us in our own way, not how others think we should- April 2, 2014

 

 

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The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.           

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