Tag: Alzheimer’s

She is heaven

I wrote the following this afternoon. This evening she was in heaven.

——-

As I sit by her bedside
watching her take each breath,
knowing it may be her last,
I am grateful for the years I’ve known her.
Grateful for her love.
Grateful for the laughter and tears we shared.
Grateful for so many sweet memories.

Most of all I am grateful for Him who knew no sin, who became sin, that we might become the righteousness of God. That she might become the righteousness of God.

She’s known Him in part for many years.
Soon she will know Him in whole.
Face to face.
In all of His glory.

It has been my honor to care for her these past four years. I’ve done what I could. I’ve tried to do what was right for her according to her wishes and needs. I’ve done my best.

As I sit here waiting, I think of the prayer prayed as part of the sacrament of last rites:

“Into your hands, O merciful Savior, we commend your servant E. Acknowledge, we humbly beseech you, a sheep of your own fold, a lamb of your own flock, a sinner of your own redeeming. Receive her into the arms of your mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light. Amen.”

“May her soul and the souls of all the departed, through the mercy of God, rest in peace. Amen.”

Being a Dementia Caregiver

Being a caregiver for a person with dementia does not mean we do all of the work all of the time. Caring for someone we love does not require us to do all the hands-on work. It does not mean we do it all without help.

Sometimes caring for a person with dementia involves hiring outside help.

Sometimes caring for a person with dementia involves having home health involved, including shower aides.

Sometimes caring for a person with dementia involves having them attend a day program.

Sometimes caring for a person with dementia involves placing them in a live-in community where staff do the day-to-day hands-on work, and we get to visit and love them without constantly feeling overwhelmed.

Sometimes caring for a person with dementia involves placing them in a locked facility or memory care for their safety and security. And for our peace of mind.

All the time caring for a person with dementia involves doing the best we can within our limits and based on their needs and disease progression.

Grateful for Those Who Care

For a year we had paid caregivers from a local agency in our home. They came for a few hours each week and often took her on adventures while I ran errands or did things I needed to do.

E has been at an assisted living for months now. We are no longer using that agency; we no longer need their caregivers.

Today I received an email from one of the caregivers. She asked if she could go visit E every week or so. She adores E and misses her. She wants to go visit as a friend.

Of course, I’d love to have her go visit E.

I’m grateful for those who love and care for E.

I Thought I Was Okay

I thought I was okay. I thought I was handing it all.

I went to visit today. It would be a quick visit because she was napping.

I checked her snack and Ensure supplies. I went to check her bathroom supplies.

Then I saw it. A wheelchair.

A month ago she was walking. She was slow, but she was walking. She could walk without assistance.

Now she has a wheelchair.

I finished my business. I spoke to the staff. I left.

After I left the facility, I stopped for a burger at our favorite burger joint. I broke down in tears at the counter as I ordered. Thankfully the manager was at the register. She gets it. She lost her daddy to this disease.

I thought I was okay. I’m not.

Caring Staff

I wish you could see how the staff of her Assisted Living love and care for her!!!

Wednesday I went to refill her fridge before a big snow/ice storm hit. I walked in and saw her sitting in a wingback chair all wrapped in a soft, warm blanket. They’d pulled the chair right in front of the fireplace, where she could feel it’s warm and enjoy watching the flames.

“She said she was cold,” they told me. “And we know she loves to watch the fire. We didn’t want her to sit alone in her room.”

I love how the staff care for her and their other residents. I love how they love the thirty-something people in their care, how they care for each one and meet each one where they are.

I love how they tell the old cowboy every night about five o’clock, when he gets anxious, “Yep. We got them all in the corral. All the horses are in. You don’t need to worry. It’s chow time. We’ll help you let them out in the pasture tomorrow morning. Let’s go eat.”

I love how they help one care for her baby and how they patiently answer all of another’s questions over and over again.

I love seeing a young man, a med tech, treat every person with kindness, regardless of how ugly they may be acting at the moment.

I love how they patiently feed this one and dance with that one.

I love how Activities Director is able to get even the most reserved among them to join in the activities, crafts, and exercise class.

I love how the Director of Nursing knows who needs what and how the Med Tech Supervisor knows just what to say to calm and assure a new resident.

I love that the Executive Director can be found helping serve meals or talking with the people under his care rather than just working in his office away from staff and residents. I love how he treats his staff and residents with honor and respect.

And I love how the staff are kind and compassionate to their residents’ families.

I hate this disease. But I love the care she is receiving.

Choices

She adored her grandchildren. She always asked about them by name. Each time I called, I’d have to go down the list of all seven and tell her what they were doing. She loved hearing of their antics and achievements.

And they adored her. They loved being with her and visited whenever they could. They still adore her and ask about her regularly.

She hasn’t recognized them for couple of years. She hasn’t remembered their names in a long time. She’s declined so much in the past few months. She’s now on hospice.

My youngest lives in Salt Lake City. As a grad student she doesn’t make much money and doesn’t have lots of time off to travel. She texted last week after getting notice her grandmother is on hospice.

“Mom, how important it is to you that I come to Texas to see grandmother before she passes?” she asked.

I love that my daughter asked!

I told her she is welcome anytime. I also told her it’s okay if she doesn’t come. It’s her decision.

I would like my kids to remember grandmother the way she was. I’d like my youngest to remember her the last time she saw her – happy, smiling, strong enough to putz through Hobby Lobby, and able to choose an ice cream flavor at Braum’s. I want my kids to remember their grandmother as delightful, charming, and kind. I don’t want their last memory to be as she is now, frail and fading. My daughter is not coming to visit her grandmother.

One family member is coming in soon. I told him the same thing I told my daughter. He’s choosing to come. It matters to him to spend time with her. I’m glad he’s coming. I’ll pick him up at the airport two hours away. He’ll stay with us. He’ll spend time with her. We will laugh and cry together.

This disease is hard on the whole family. It’s hard not only on those caregiving; it’s hard on all those who care about the one suffering from Alzheimer’s.

I’ve learned to extend grace and not hold it against those who have chosen not to visit or call.

Some in her extended family haven’t communicated with her in years. They missed out on some good times. They missed out on spending time with this beautiful woman. I’m sorry they made that choice. She asked about them at first. I offered to help her call them or FaceTime them. They chose not to make time. They chose not to visit. I’m sorry for them and for her. I’m sorry they made the choice not to spend time with her, but it was their choice.

We all make choices in life. We each live with our choices.

I’ve done, and continue to do, what I think best for her. I’m only responsible for my actions and my choices. I’ll not judge others for theirs. I’ll not pick up resentments towards them. And I’ll not carry their resentments or judgements of me; their resentments and judgements are theirs to carry.

Alzheimer’s is horrible disease. It slowly destroys a person’s brain. It eventually kills.

I don’t have to let it destroy me as I care for her. I don’t have to let it destroy my peace. I don’t have to let it destroy my relationships with those I love and who love me.

Yes, Alzheimer’s is a horrible disease that can destroy the whole family. I choose not let it destroy mine.

E meeting our fourth. Surrounded by his big brother and sisters.

Hospice Chaplain

Yesterday I received a call from the hospice chaplain.

She was E’s physical therapist last winter. She’s taken online courses to become a hospice chaplain.

She took care of getting a walker for E last Thursday. She took the walker to the Assisted Living, adjusted it properly to E’s height, and worked with E on how to use it. Then she prayed with E.

Today she called to ask me chaplain questions and to tell me of a new development with E. She’s taking care of getting some supplies, things we haven’t needed until now.

Did you know Hospice provides a walker, a wheelchair, incontinent supplies – wipes, absorbent briefs, and waterproof pads to put on the bed? These are usually completely covered by Medicare. They will bring cream or lotion if needed for rashes. If your person needs oxygen or a hospital bed, they provide everything for that, too. They take care of ordering all medications. During the end of life, hospice can be a huge blessing.

The hospice chaplain was so kind and encouraging to me today. She listened. She cared. She helped me feel better, lighter after we talked.

She will be visiting the Assisted Living a couple of times each week. She will meet with me anytime I need her.

This lovely woman is helping E and me. Body, soul, and spirit.

Side note: I’m grateful for how all members of the hospice team work together.

The chaplain was calling me about chaplain things. In the same call she updated me on a few medical/physical things. She’s taking care of ordering needed supplies.

She didn’t say, “That’s the nurse’s job. Let her call the family. The office staff can order supplies. That’s not my job.”

Her taking care of all these things meant I didn’t have three phone calls from three different staff members.

Good hospice folks are definitely worth their weight in gold.

Why Hospice?

Many people have questions about Hospice.

Here is a sample the letter I might send to family after I signed the paperwork for my person to be placed on Hospice Care. Maybe it will help some of you understand more about Hospice.

——-

Hospice has been called in.

This is due to the progression of her Alzheirmer’s disease.

All members of her medical care team are in agreement that Hospice is the next right step. [Co-Guardian] and I are in agreement.

Alzheimer’s is a disease of the brain. Anything controlled by the brain can be affected by the disease, including all physical functions. Over the past five months her disease has progressed and she is now considered to be at stage 7B on the Alzheimer’s Scale.

She cannot feed, bathe, dress, or toilet herself. She requires hands-on assistance with these things. Four to five months ago she could do these things with simple prompting.

In the past month she has declined rapidly. At Christmas she was able to walk up the stairs into our home unaided. She could rise from the chair or couch and walk to the kitchen without help. She fed and toileted herself without aid. When cold she put on her sweater. She can do none of those things now.

She is very weak. Her hands shake. She has stopped using her left hand unless prompted in order to hold her glass. She needs help walking and standing up from a chair. Six weeks ago she was going to an exercise class weekly at the local senior center. She was walking up to a half mile. She walked slowly, but she did it. She now has trouble walking anywhere without someone holding her arm to support her.

Her cognitive ability has declined quickly as well. Last May she scored 13/30 on the SLUMS Exam. Her scores had remained fairly stable for two years. Three weeks ago she scored 2/30, meaning she has the cognitive ability of a two year old.

She rarely speaks now. Her Speech Language Pathology Therapist has been working with her over the past year. Mary has noted the rapid decline since early December. She is unable to get her to speak more than a few words each visit.

She spends a great deal of time sleeping. Five months ago she rarely slept during the day.

These are all parts of her Alzheimer’s progression.

As I’m sure you know, Hospice means they will not treat her with any life saving treatments. She will not be taken to the hospital. She will be kept comfortable in her home. This does not mean death is expected in the next few weeks, but she is terminal. Hospice is indicated when a terminal patient is expected to live less than six months. If She lives longer than that, she will continue on Hospice care. Hospice is covered by Medicare.

She is still under the care of the primary care physician she has had since moving to Texas. She will no longer see her neurologist or any other physicians.

If she needs an IV because she is dehydrated, she will get it in her room to help her stay comfortable. She will not receive treatments such as surgeries, hospitalization, CPR, etc. If she needs an inhaler or breathing treatment due to Covid, she will get it to help her stay comfortable. She will not be placed on a ventilator. If she gets an infection, she will receive antibiotics. If she becomes septic, she will not be given life saving medications. She will not be taken to the hospital.

She will remain at her Assisted Living; Hospice staff and volunteers come there to see her. She will continue to live as she has – participating in activities, eating in the dining room, etc. Her same shower aide will come twice weekly. Her nurse will now visit twice weekly, this is up from once weekly. As she declines, the visits from the aid and nurse will increase as needed. All of this is covered by Medicare.

She will continue to receive most of the same medications – antidepressant, sleep aid, dementia medications, etc. Hospice will add medications for anxiety or pain as needed. Again, Hospice works to keep her comfortable as her disease progresses.

_________

Hospice services include: nurses, physician, social worker, chaplain, counselors, aides (for help bathing), volunteers (to sit with the person), respite care (for those still at home), and more. They provide medical equipment like beds, oxygen, walkers, and wheelchairs. They provide incontinent supplies. They help the whole family.

Choosing a Long Term Facility for Your Loved One

In the past two months I’ve been contacted by a number of folks who needed to “place momma next week!” They were looking for advice and help. (I’m always glad to help when I can and to share my knowledge!)

A few of these folks had been thrust into the situation because their family member had a sudden debilitating illness or accident. Others had been caring for the family member in their home for years but could no longer continue. I was able to get in touch with someone who could help them quickly.

Here’s my advice for those with elderly or infirm family members:

If you are caregiver for a parent or family member with dementia or serious chronic health issues, don’t wait until you need full time, residential care to start visiting area facilities. Don’t wait until your loved one needs urgent full time care to learn about care options and the rights of residents of long term care facilities. Start now. Learn everything you can so you are able to make the best decisions for placement when needed.

Three years ago I visited every Independent Living (IL), Assisted Living(AL) and Memory Care (MC) facility in town. I also visited many facilities near E’s brother, so I could compare state to state and learn as much as I could (and in case I decided living near him was best for her.) It wasn’t until ten months later that she moved to Texas, to an Assisted Living near me.

I took tours. I made notes. I asked questions. I spoke to staff and residents. (At one facility the tour guide knocked on a door to show me a particular room layout. The lady who lived there was thrilled to have a visitor! I ended up sitting and chatting with her for more than an hour as she showed me the beautiful furniture her late husband had made and told me about him and their children. The staff member started to apologize, but I told her I was fine. She had a meeting which she went to the meeting while I stayed and chatted. No, I did not place E there. I believe spending time with that sweet woman was the purpose of my tour.)

When I could, I had a friend go with me on the tours. Linda had experience with Alzheimer’s and placing family in long term care facilities. She went with me on my first three tours. Her perspective was so helpful! She often just asked me what I thought of this or had I considered that or did I notice that thing. I’m so grateful to her.

Find a friend or professional to help you as you tour facilities. (More on professionals later.)

At each facility I was given a brochure. I made notes on the material as we toured. I took pictures of rooms. If needed, I asked to sit for a moment to write things down.

I created a spreadsheet and added information after each visit:
Facility Name
Address
Type of Facility – IL, AL, MC
Number of Residents
Type of Room – Private or Semi-private
Private Shower – some facilities have toilet and sink in rooms but showers are in the hallway and shared by residents.
Room Type – each facility has names for the styles of rooms. I made note of what rooms were available.
Size of Room – square footage
One room or two – E’s room had a bedroom area and a living room. Her first placement had one large room with no separation.
Cost per Month Rent
Cost per Month Additional Services – E needs Medication Management, Assistance Dressing (Cueing only. Hands-on would be more) and Escort to Activities)
Do They Accept Medicaid? – rarely does and Assisted Living accept Medicaid. It’s good to know if yours does.
General Impressions.

I learned how the types of facilities differed. I learned terms like “Age in place” and “Secured facility”. (Secured facilities are usually Assisted Livings that accept residents who are “Elopement Risks” and may have many residents who suffer from advance dementia, but they differ from Memory Care.)

I read books about Eldercare and dementia. “The 36 Hour Day” and “Dementia with Grace” are the two I learned most from.

I joined caregiver support groups on Facebook. I wanted to understand caregiving so I’d know what to look for in a long-term care facility.

I researched the rights of long-term care facility residents and their families. I learned what an ombudsman was.

I asked lots of questions!

And I prayed.

On hiring a professional….

When I first became Guardian for E, I hired a Care Manager. She was an expert on facilities in that area. She met with both of us (E and me) and asked lots of questions not only about E’s card needs but about her likes and dislikes. Then she put together a list of places she thought would be a good fit. She answered lots of my questions over the next few weeks. And she visited E weekly for months (a huge help to me since I was eleven hours away.)

A friend of mine owns Senior Living Transitions in Wichita Falls. Her services are free to the families. She is paid by the facility once a placement happens (similar to an employment agency). She knows the area facilities and staffs because she visits often. She volunteers for things like Bingo where she sees the residents and staff interacting. I recommend finding a service like SLT in your area. And, yes, the Senior Living Transitions team has worked with families as far as eighteen months in advance of when their loved one was actually placed in a long term care facility. They are willing to work with you to help you the best possible solution and the right timing for placement.

Yes, national agencies can help you find a place for mom. But they may not have a person in your area, in which case they will look online and give you information from facility websites.

Having someone experienced and knowledge in your area is priceless!

Sitting

I haven’t post much the past few months. E moved into an Assisted Living. I plan to post some things I wrote during the fall and holidays in the coming weeks. I plan to share this journey.

I write this today.

————

I am sitting here watching her.

She read the same Christmas card over and over. She kept trying to turn the page/separate the back. Trying to peel the cardboard apart.

It’s harder and harder to visit her.

She has nothing to say. No words. Yes, she can speak, but has nothing she wants or needs to tell us. Her brain is broken.

She stares into space. Or sleeps. Sitting in her favorite chair with a warm blanket wrapped around her and a book in her hand. A book she no longer reads.

A year ago we’d talk. We’d shop. We’d watch Downton Abbey and she’d laugh at the jokes. She read daily. She’d play with my pug. Six months ago she’d express opinions on clothes or food.

Now she seems to not even be present. Like there’s no one home in her head.

She’s not unpleasant. She’s not ugly to others. She’s compliant. She’s continent. She feeds herself, dressed herself, and walks without a mobility aid. But she’s no longer “here.”

She is not longer the woman I knew. The one my dad fell in love with. The one who cared for and loved us as if we were hers, because to her we were.

She doesn’t know any of us. She doesn’t know where she is. She has no memories of anything.

It’s so sad.

And, yet, I come. I visit. I spend time here.

I talk to the Director of Nursing to see if there’s any issues. I say hello to the Executive Director and Activities Director. I smile and greet the staff.

I check her supply of Ensure, snacks, and toiletries. (She needs more tissues this week.) I straighten up a bit and put things back in the closet, on the bookshelf, in drawers so her aides can find them. I check her room, her bathroom, her closet.

I sit with her. I try to engage her. I tell her stories of my family. I compliment her hair and tell her that her blue sweater matches her beautiful blue eyes. She smiles. She says nothing. She closes her eyes and sleeps.

Then I sit quietly. Praying. Asking God to watch over her, to protect her, to help her know she is loved. And I ask Him to take her home. Soon.

I hate this disease.

I love her.

.

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