Grief After Death

The emotions a caregiver will experience prior to, and then following, the passing of a loved one with dementia can range from profuse grief and loss, to being bewildered and incredibly confused, or feeling numb or relief.  Often, it is a combination of all these feelings and can change from one to the other very quickly.  

After years of concentrating on the well-being of your loved one, it can be very disorienting and complicated to work through your feelings because everything else was secondary.  You only felt good when they felt good, and now you no longer have them as an index to measure your situation and progress.

I consider Alzheimer's to be the long goodbye because it is a prolonged process whereby a loved one very slowly fades away; ultimately becoming merely a cipher or a shadow of his/her former self.  It seems that after going through many years of a very gradual but constant decline, you would be prepared for almost any eventuality.  At least that is what I was feeling.  It wasn't like Kristie and I hadn't had plenty of time to take our leave of each other, and really - how much more can someone grieve after all; or so you would think.

Following Kristie's death, I wrote in my journal, "I am glad that she is free; free at last – but still it hurts.  It hurts not just that she is gone, but for how much both of us lost."  

I lost Kristie many years before, but her care and well-being were the most important thing in my life and everything else was subservient to looking after her.  It is hard to adjust when the most important thing in your life is gone.  And I consider myself fortunate, because I have a strong reassurance of our relationship continuing hereafter.  Nevertheless, it takes time, reflection, grieving, enduring, and healing to live again.

Hospice provided me with information about the grieving process which was helpful, though my circumstances were very different from what they described.  They talked about how different my life would be without a spouse, and that I may feel awkward and want to avoid friends and social engagements without her.  Well, my life really didn't change that much socially because Kristie had been in memory care for 7 1/2 years.  And since Kristie passed away in the beginning of the Covid-19 pandemic, concerns about avoiding friends and social gatherings weren't even an option.

I took advantage of grief counseling, through hospice services and another professional counselor who shared my faith and used EMDR therapy.  I found both counselors to be very helpful, but especially the EMDR therapy which surprised and allowed me to work through some lingering issues from 30 years before in our marriage.  I remember driving away after my second EMDR session feeling that I would be able to receive and take in enough affective light and spiritual insight to avoid darkness overwhelming me emotionally, which gave me increased hope and courage to take on life and my new reality.

Just as each caregiver's experience dealing with Alzheimer's is unique, so it is with the process of grieving and dealing with death caused by this horrible disease.  No doubt my journey will differ from yours, but hopefully anyone grieving the passing of their loved one will feel some understanding, compassion, and empathy for their loss by our shared experience.

As I have stated elsewhere, good memories are better than bad memories.  While Kristie was in memory care I reached out to her family and friends to write her life story, which I found to be therapeutic.  It was very helpful to reflect upon and document both our struggles and our good times. It helped me see that Alzheimer's is something we did together.  We were united and a team, with very different roles.  Like any battle, it wasn't always pretty, but we fought and did our best; and we were united until the end.

Readers are encouraged to share their stories, advice, and links regarding Grief After Death in the comments box below.

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Hospice & End of Life

There are numerous decisions which need to be made as a loved one declines and their passing become imminent.  It is helpful to have considered and prepared ahead of time contingency plans so you are not trying figure everything out while also feeling distressed  and overwhelmed.

It is essential that the family complete beforehand the legal paperwork to deal with end of life situations, such as an Advance Directive, Medical Power of Attorney, Will, etc.

Which hospice service you will use is another decision that needs to be made.  It's nice to know ahead of time who you prefer and who to call.  Care facility workers and support group participants usually are willing to share their experiences and preferences in this regard.

It is also helpful for families to have prepared and thought out how to care for the remains of the loved one and any funeral plans.

My wife was severely disabled for her final 5 years while in memory care, and qualified for hospice services 3 different times.  Her condition would deteriorate and entitle her to hospice care for a few months, and then she would recover so her passing was not impending and no longer required hospice.  The final time she was on hospice for over a year.  It was an up and down situation where she won't eat for a day or two, and then she would recover somewhat.

Without question, my wife received better care and monitoring when hospice was involved.  They helped with medications, care, and monitoring - providing me with updates.  Hospice workers are an incredible resource to help you and your loved one get through this final, emotional stretch.

My wife passed away during the Covid-19 pandemic, which added to my anxiety because I was not able to visit and be with her due to health and visitor restrictions until it was evident she would soon die.  Fortunately, I had made my lists and had everything prepared for who I needed to call, both prior to and after she passed.  Hospice and the funeral home were extremely helpful and ready as I spent the last couple days with Kristie.  

Your stories and experiences regarding hospice and end of life would be appreciated in the comments section below.

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Falling

The increased risk and the devastating consequences from falling are enormous for senior citizens, and it is only compounded for someone with Alzheimer's.   It is estimated that someone with Alzheimer's is 1) twice as likely to fall, and 2) more than three times more likely to fracture their hip when they fall, which leads to surgery and immobility.  The rate of death following a hip fracture for those with Alzheimer's is also increased.  Thus fall prevention for people with dementia is critical.

Anyone with dementia who has to regularly deal with stairs is at an increased risk of a fall which may result in a serious or life-threatening injury.  A fall is often the determining cause for placement in memory care, and may result in hospice services being involved.

I can relate a number of stories from both my family and my Alzheimer's support group where things were stressful, but manageable until there was a fall.  Suddenly everything changed and things would never be the same again.

For my father-in-law and my wife, it was the result of Presenilin 1 seizures.  Both of them lost mobility, and my wife fractured both her shoulders when she fell.  For a good friend, it all changed when he and his wife stumbled on their stairs as they were going their bedroom - fracturing his ribs and resulting in his wife being placed in memory care for a few months before she passed away.

Caregivers need to be aware and take steps to reduce the risk of injury from a fall.  The resource links below provide additional information which can be helpful.

Your stories and experiences regarding this issues would be appreciated in the comments section below.

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Pacing and Wandering

One of the most unusual behaviors in the middle to late stages of Alzheimer's is incessant pacing, needing to be in constant motion, and unable to sit down or relax.  My wife was actually very lethargic for the first 5 years after she was diagnosed with early-onset Alzheimer's, often spending her entire day watching television.  

That all changed very rapidly when we moved across the country to live with our daughter and her family.  I'm not certain whether it was triggered by the confusion she experienced living in a totally new environment, or a manifestation of the progression of the disease, or a combination of both - regardless, Kristie had to be on the move during the day.  She would sit down to eat breakfast, but I often had to feed her spoonfuls of food for lunch and dinner as she paced back and forth in our home.  

I would go walking with her in the morning and again in the afternoon - often walking 6 or 7 miles a day, which really tired me out - but she still would pace while we were home.  The good news - both of us lost weight, were much more fit, and slept good at night.  The bad news was Kristie would just open a door and wander off, even though she had no idea of where she was, or any idea of where she was going.  We had to watch her constantly to keep her from getting lost.

As I have mentioned elsewhere, during my first Alzheimer's support group meeting, someone suggested I get child locks for our doors - which was a lifesaver!  I wish every problem I encountered as a caregiver was fixed so readily.  The child locks prevented Kristie from just wandering outside and getting lost; but it didn't stop her from pacing back and forth through the house, because she had to be on the move.

I have wondered if she was experiencing something like the nervousness you might have before making a big time presentation, or before an important interview, where you find yourself nervously pacing back and forth with an over-abundance of energy.

It is fascinating to visit a memory care facility and see residents who are in this phase and seem to be constantly in motion.  Thankfully, they are in a safe environment that prevents them from just wandering off and getting lost.  It's too bad we can't bottle some of that energy to share with those of us who lack the vitality to get anything done.

I highly recommend getting a medical ID bracelet for anyone with dementia that includes their name, condition and who to call if they should get lost; along with a tracking device or wander alert bracelet for those who wander.

Your comments below, or willingness to share your observations and experiences with pacing and wandering would be helpful and appreciated. 

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Anger, Anxiety, Paranoia, and Sundowning

It is heartbreaking and frightening to see someone you love and respect become sullen, ill-tempered, and accusatory.  I first witnessed this change with my father-in-law, who was a favorite dentist, scoutmaster, and local community and church leader.  He was remarkably well-liked and was always positive, and involved in family and community projects.

It was only a couple years after he was diagnosed with early-onset Alzheimer's and had to sell his dental practice that we jointly purchased an old historic home with my in-laws, and they moved 600 miles to live with us.  No doubt the move to a totally new environment as his memory and coping abilities were failing only increased his confusion and paranoia.  It was a Dr. Jekyll and Mr. Hyde transformation.

The old historic house where we took care of my father-in-law for his final 3 years.

It really would have been more appropriate to call our home the old "hysteric" house because of all the trauma and anxiety we experienced in that multi-generational setting.  My father-in-law was often on, or over, the edge - especially in the late afternoon as the daylight began to decrease.  We weren't familiar with the term "sundowning", but we were well aware of the behavior and no one had to define the term when we heard it.

The change was radical and tragic.  In only a few years my father-in-law went from being the favorite, fun-loving grandpa, to someone our children had to fear when he became anxious and angry.  There were a few times where he became threatening with a knife or other tool, and our daughters knew they were to go up to their rooms when this occurred.  My wife even felt her life was threatened once when he came after her with a hammer.  Fortunately, I was able to overpower him when he became too threatening, but it was awful to experience.  This was 35 years ago and something for which a calming medication would now be prescribed.

I may be wrong, but it seems strong-willed men who were very independent are the most prone to reacting with suspicion and paranoia in the middle stage of Alzheimer's as they lose their bearings and coping ability; which is aggravated when they are tired and as daylight decreases.  

I was very fortunate that my wife became more trusting of me instead of paranoid as her dementia progressed, and which I tired to describe in "Doing the Best They Can".  I highly recommend considering medication and becoming familiar with the recommendations below to deal with anger, anxiety, paranoia, and sun-downing.

Your comments and willingness to share experiences related to anger, anxiety, paranoia, and sun-downing in the comments section below would be appreciated.

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Support Groups

Being a caregiver for a loved one with Alzheimer's is an all-consuming role; and the worst part is when you feel, not only completely overwhelmed, but also very much alone.  No one can empathize and relate to what you are experiencing as much as other caregivers who are (or have been) in a similar situation.  An Alzheimer's support group gathers and unites caregivers to provide a sense of comradery, community wisdom, and team empowerment - because they understand, are on your team, and will help you problem solve.  

I took care of my wife for the first 5-years following her diagnosis, with the help of her mother who lived with us, and by hiring some additional help to monitor Kristie while I was at work.  I refer to this period as "Good Time", but I was not prepared for the rapid changes and decline which occurred when I retired and we moved across the country to live with our daughter's family.

I became a full-time caregiver for Kristie, but it was almost too much.  Thank goodness my daughter found and made it possible for me to participate in an Alzheimer's support group.  It was a godsend, because they understood completely what I was going through, and would brainstorm and share with me things that did and didn't work.  

Any doubts I had about the benefits of participating in a support group vanished during my first meeting.  I was overwhelmed with Kristie's just wandering away and getting lost.  Someone suggested installing child locks on our door to prevent Kristie from escaping - which solved the problem and restored my sanity.  Now, 10 years later, and year after my wife passed away, I continue to meet and rally with my support group to both receive and give: strength, understanding, perspective and wisdom.

One of the primary benefits of a support group is respect.  I cannot describe: 

  • First, the respect I have for fellow caregivers in my support group as they doggedly demonstrate their ongoing commitment and kindness to their loved one and the other members of our support group; and 
  • Second, the respect and support I feel from the members of my support group.  It's like being part of a united, supportive family.

No matter how well you may be holding up as a caregiver, you can be of great benefit to others, while at the same time enjoy and be benefited by participating in a support group.

Your comments or willingness to share experiences below about Support Groups would be appreciated.

Resource Links

Alzheimer's Association - Contact information for local chapter to find a support group.

Community Resource Finder -  Lookup for local Alzheimer's support groups - change the zip code for your area. (Sponsored by AARP and Alzheimer's Association)

ALZConnected - Free online community for everyone affected by Alzheimer's or other dementia. (Sponsored by the Alzheimer's Association)

Alzheimer's Foundation of America - Telephone based, call in support groups.

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False Memories & Accusations

The brain really does play tricks on someone with Alzheimer's.  Not only do they lose the ability to remember things, they may also start remembering things that didn't happen.  As we would drive some place new, Kristie would see someone standing along the road and make the statement, "That person is always standing there", even though we hadn't been on that particular road before.

She was often convinced that we had already done something when I would mention a new experience to her - like going to see a new movie that was just coming out.  Even though the movie had only been announced to premiere in a week or two, she was certain we had already been to see it.

It is also common for someone with dementia to make accusations such as something was stolen, or they are being poisoned or held hostage.  And it is evident from their demeanor that they are not pretending or just playing around.  While this wasn't my experience with Kristie, we certainly had to deal with it while caring for her father who was often upset and accusatory.

False memories and accusations to me are just another indication of how confusing life can be for someone with dementia as they try to make sense of everyday life and are no longer able to reflect accurately on past experiences.  It was another situation where I would say to myself, "She doing the best she can."  I pity both the caregiver and the person with dementia when a caregiver confronts their loved one like they are lying, or tries to logically point out their error.  It's like telling someone who is color blind that they can't believe what they are seeing with their own eyes.

While false memories and accusations can be a painful reminder of how Alzheimer's has disrupted and changed your relationship, it can also increase trust if the caregiver is careful to not embarrass or confront their loved one.  There are a number of useful suggestions in the Resource Links that can be helpful on this subject; starting with don't be surprised, don't overreact, and go with the flow.  

Your comments or willingness to share experiences below about false memories and accusations would be appreciated.

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