Tag: care

Trying to keep Mom kempt

hairrollersMom is now sleeping in her clothes. When I’ve gotten her into the shower, I realize how hard it is for her to dress and undress. I understand that she wants to manage, but in this area, she won’t allow me (or anyone else ) to help most days.

I wonder if the days that she won’t allow me to help are days she doesn’t really recognize me anymore.

I scheduled a hair appointment but when they tried to get her to her appointment she refused to go. Maybe it would have been more successful if I was there. I can’t always be there when she needs to dress, shower and get her hair done. I hoped it would be easier for her community to help, but now it just feels like another reminder that Assisted Living isn’t the right place for someone with memory issues.

I return the next day and walk with my Mom to the beauty parlor. It’s just the next building over through one connected hallway,  and it takes us almost fifteen minutes to walk there. The lady who has been doing my Mom’s hair every other Tuesday for several years greets us and she says she can get her in this afternoon. She will come get my Mom if she doesn’t show up. I’m hoping that my Mom will go now that we have her scheduled with her regular hair dresser. I’m thankful that she is willing to go pick my Mom up from her apartment and already knows where she lives (having had to do this before). I write-up an appointment card and try to get my Mom to stick it in her pocket. She wants to hold it to help her remember.

When we get back to her apartment, she asks me what she’s doing today. I run through the activities. When we get to the hair appointment, she asks if we can walk there so she knows how to get to her appointment. When I tell her we just did that, she responds, “I hate this, I should know that we just did that.”

“I know Mom. It’s okay, you have lots of friends around you who will make sure you get to your appointment today.”

I have been working harder to coordinate with the floor staff. But I know my Mom will just sometimes refuse to shower, change clothes, get her hair done … it takes a village to age them, as well as raise them. Reminded.

Another storm passes

storn cloudI return to visit my Mom a few hours after she was found on the floor. We aren’t sure if she fell since no one saw what happened and my Mom doesn’t remember. Within an hour of the “fall” that resulted in EMTs being called, she gets up and is moving around. For several months she has been walking more stiffly and taking shorter steps. There appears to be no change in her movement, speech or behavior. I discuss with the staff that I would just like to keep an eye on her and let them know I would be returning later in the day.  When I return she is still sound asleep and the night shift has set aside a meal for her should she awake and be hungry.  For several months, she has days that she sleeps through. So this isn’t out of the ordinary either.

I return to check in on my Mom the next day. The EMTs had asked if I noticed any changes in my Mom when they were assessing her. While she seemed to have more trouble sitting up in bed initially, I wonder if we just haven’t seen her try lately. I remember being surprised when I realized how long it was taking her to dress now. There seem to be no other changes in her movement and the day after she is back and engaged in the morning and afternoon activities the community offers.

I know that as the family member, I am probably going to be the first one to notice changes in my Mom. I remember being dumb-founded at how long it took for any doctor to initially diagnose my parents. A month before my father passed away and well into moderate Alzheimer’s, he got a 29 out of 30 on the mini-mental or folstein test often used as the first gate down the pathway to a dementia diagnosis. I tell those that ask that if you are noticing a change in behavior, you need to pursue your concern. It’s important to request a Neuropsychological Evaluation that will take at least two hours and is administered to understand where there might be cognitive decline.

My siblings and I will continue to keep a vigilant eye on my Mom. I can’t imagine how our health care system can effectively manage those individuals without someone who can be their medical advocate.

For now, I feel like the skies are still gray, but the thunderstorm has passed. I feel a butterfly in my gut as I imagine what the next crisis might be. Squeamish.

The right place for Mom

longroadFor several months, my siblings and I visited a variety of communities to determine if we might be able to find a better place for my Mom. My Mom is in a very nice Assisted Living facility, but it’s geared to help a variety of individuals manage the activities of daily living (ADLs). When you have dementia, just having help and reminders is not enough. Most of the activities aren’t geared to someone with dementia, and we believe my Mom needs a different environment.

Two weeks ago, my Mom’s current community launched a daytime program to engage her, and five other residents from 9 a.m. to 3 p.m. While my Mom can’t remember her day to share it with me, I have found a very different person when I visit now. On my last two visits, my Mom wasn’t sleeping but was sitting out in the courtyard peacefully on a rocking chair. While we are chatting, another resident walks by and my Mom raises her hand and cheerfully waves to someone I recognize, but have never met. The new program seems to be agreeing with my Mom.

I retained one of the women who we hired to help my Mom when she was going through periods of “unbecoming behavior.”  She has earned my Mom’s trust and offers my Mom companionship at dinner as well as can help ensure Mom’s laundry get’s done. My Mom usually hides her laundry making it difficult for the staff to be able to simply offer her that support. We still have a few gaps in her care (showering and general personal hygiene).

So many of the challenges in my Mom’s care have been to help us address behavior that doesn’t quite fit into the standard care needs for someone in Assisted Living. For that reason, we have put her on a wait list at a facility that is only geared to help its residents who have dementia. The idea of moving my Mom makes my tummy hurt and my heart race. But I was never of the belief the journey would get easier.  Fortified. 

Related posts:

What should a community include for a person with dementia?

Is my Mom in the right place?

The high cost of dementia care

bag of moneyI have been acutely aware of the cost of caring for my Mom who has multi-infarct dementia. The average monthly cost just for her Assisted Living community is $7,500. When she was exhibiting episodes of unbecoming behavior, we were required to hire additional assistance which cost $5,000 a month. That translates to $90,000 just for the community. Some months totaled $12,500. We are in the metro-DC area.

Thankfully, my parents planned well and my Mom has money to cover these expenses — for now. However, I don’t think they expected that the funds would have to be used to pay these kinds of fees. They bought into a Continuing Care Retirement Community (CCRC) believing they were buying into discounted care fees.

When we were told a few months ago that we might need to find a new home for my Mom by her community, we started to look around. We realize there are a wide variety of community options as well as range of fees. Given what I’ve found, I am not clear on what the very large down-payment did for their finances. I do know that the community support saved up from having to pursue guardianship of my parents when they didn’t recognize the impact of their changing cognitive abilities.

There is no perfect answer, but we can validate the reality of the high cost of dementia care. We are fortunate my parents planned — I can only imagine how much more difficult it would be if my Mom didn’t have the financial resources to find the right care. Wondered. 

Related articles:

The High Costs of Caring for Someone with Dementia by CBS News

 

Here come the health complications …

momsleepingontableFor some time, my siblings and I have wondered if my Mom is in the right place. When we had to hire personal assistants for my Mom who is in Assisted Living, we started to look at other communities. We were having to spend about $5,000 a month on top of the monthly Assisted Living fees of $7,500. GULP! We are blessed because my parents saved the money to be able to cover these expenses — but it doesn’t make them seem any less gargantuan. For those of you familiar, this is a Continuing Care Retirement Community (CCRC) and that is a “discounted monthly rate.”

Our goal is to find the right care for my Mom as well as be a good fiduciary representative of her money.

I hired a firm to help us find the right community for my Mom. We have dozens in the metro-DC area to choose from. My siblings have been coming to town to visit the final communities. We decide that one dedicated to dementia care would be the best fit for my Mom. However, during this process, my Mom had some health issues.

I took my Mom to the doctor because the Assisted Living community suggested we follow-up the initial tests from her primary care physician. Her general diagnoses is “Congestive Heart Failure” which is apparently very common in anyone over 80 years of age.

My Mom is sleeping most of the day now and I have to wake her when I arrive to take her to the Cardiologist. A few weeks ago, my Mom started walking very stiffly. As we walk to the car, she lets me hold her hand for support. She doses off in the waiting room and when we reach the examination room, she just wants to lie down and sleep. She actually sleeps through the EKG. I feel a sense of deja vu back to my Dad’s final doctor visits.

The Dr.diagnoses her with Diastolic Heart Failure. There is really nothing to do since she is not complaining of any symptoms or pain. He tells me what to watch for (swelling feet, weight gain). Last time the swelling self-resolved, but if it doesn’t, they can put her on a diuretic to help her eliminate the retained water.

We now have to weigh our decision and hedge our bets that Mom won’t need Skilled Nursing if we move her to the community dedicated to dementia care. Their goal is to have our Mom live the rest of her life in their community, but more complex health care issues may mean that she would need Skilled Nursing at some point moving forward. Just when you think you have a clear path, the choices get muddied. Befuddled. 

Have you heard of The CARE Act (Caregiver Advise, Record, Enable Act)?

CAREAARPI attended a caregiving support group at my Mom’s retirement community. One of the members was sharing the horror story about the release of her husband from the hospital. I immediately relived the story of my Dad’s hip surgery and the doctor’s discharge plans.

After breaking his hip on the racquetball court, the doctors were going to release my Dad into the care of my Mom. My Dad had surgery and was in the hospital for 4 days. He was in terrible pain and was unable to get himself to the bathroom unattended. At this time, my Dad was around 200 pounds and my Mom was around 105 pounds. My Dad insisted they release him so he could get back to their 3-level town home. As I sat with my Mom listening to the discharge instructions, I stopped the doctor and told him there was no way my Mom was going to be able to care for Dad. Thankfully, my parents were in a Continuing Care Retirement Community, and they had the ability for my Dad to be cared for in skilled nursing while he rehabilitated.

I thought it was derelict for the doctor to release my Dad into the care of my Mom given his needs. At the time, my Mom was initially unwilling to admit she couldn’t care for my Dad. However, at a glance, it seemed very obvious that my Mom would be unable to help my Dad get out of bed and to the bathroom and ridiculous that he would be able to climb two sets of stairs so soon after his surgery.

While my Dad was angry and hated being in skilled nursing, he needed to be able to get himself to the restroom at minimum. Then he was able to finish his recuperation in their one-level apartment.

I’m not sure the new act if implemented will help, but I’m glad to see some light brought to this topic many of us have already faced. Finally, Some Help For Family Caregivers After Hospital Discharges Interested. 

 

Additional Related Stories:

Support Seniors and their Family Caregivers AARP

Thank you Gov. Fallin, Legislature for Support Marjorie Lyons

 

When will I stop believing what my demented Mom tells me?

carlyhostMy sister came to visit to help chase down my Mom’s medical issues giving me a break and allowing me to focus on my daughter’s foot surgery. The true sandwich generation dilemma — both Mom and daughter need medical attention and care right now.

My daughter is only 11, but had chronic foot pain due to an extra (accessory) bone that outlasted all the non-surgical options we pursued. She stopped dancing and gutted out soccer as the goalie to help her team who lost two players due to broken bones. Surgery was a few days ago. Thankfully, it went well and I just finished spending the last two days as foot-maid (pun fully intended).

My sister just returned home yesterday and my Mom just called telling me her “cupboard is bare.” Not only does logic tell me she still has plenty of crackers and chips, she is in a community that serves every meal and that also has a “store” where she can pick up bread and peanut butter and jelly if she really is out of supplies.

However, I immediately feel guilty and assume my Mom is reporting facts. I can’t stop the urge to believe my Mom. I’m not sure if I ever want to lose that ability because it will mean I know my Mom is lost to me for good. Reflected.

 

Medication Roulette and Dementia

rouletteMy Mom is sliding into the deeper grasp of dementia. It is surprising to many people (and often to me) how one moment she can be so lucid, and the next, totally disjointed. She continues to try and join in the activities of the Independent Living community she was a member of for over a decade. Now, she’s confrontational and many of the residents are complaining. It’s sad that the community can’t deal with her, but even those that are well-trained are having a hard time re-directing her when she gets aggressive.

In my Mom’s community, Assisted Living is a hallway away from Independent Living. Now that my Mom’s full-time companion, my Dad, has passed, she is alone and really having a hard time finding a footing. The dementia is making it impossible. She’s very lonely, but on top of her grief, she is unable to make new friends and her friends are finding it hard to engage her now too.

Mom founded many of the bridge games and loves to play, but she can’t remember, nor does she recognize that she is no longer running the games. She’s short-tempered and rude with most of the other bridge players — a concept that would horrify the woman who raised me. However, this is the woman most of the bridge players see and don’t know the caring woman that formerly inhabited my mother’s being.

The doctor changed her medication and added the Exelon Patch (to help cognition) and Risperdal (to minimize anxiety and paranoia). They also asked us to hire personal assistants from 1 to 9 PM daily. The first two weeks went well and then things fell apart. The doctor is increasing her dosage and we have replaced the assistant that worked on the days I noticed my Mom having the most trouble. Risperdal is an off-label prescription and when we first got the recommendations, we did our research and gulped as read the side-effects. We have to try something new, because now, she is not doing well.

The current options outside of increasing her medication:

  • Move her to the section of Assisted Living and put on a Wander Guard. This prevents the doors from opening and the elevator from working. I can just visualize my Mom banging on the doors and confronting anyone that tries to use the doors if they don’t work. Both the AL staff and I don’t think this is the right solution.
  • Check her into a psychiatric facility so they can treat and manage her dosage and find the right mix. This could be a 2 to 3 week visit. The change is living arrangements alone will confuse and frighten my Mom and my biggest fear is that they will medicate her into a submissive state and she will return to just be admitted into the lock-down memory community.
  • Find a new facility that is dedicated to memory care and move her from the community she choose. This seems like the most logical next step for us to pursue.

Please let me know what your experience and suggestions maybe as we try to navigate this new transition in my Mom’s care. Pleaded.

Prior Related Topics include:

The Benefit of a Continuing Care Retirement Community

Your Parents Agreement with the Retirement Community is being Terminated

We are Ready to Move into the Retirement Community

 

Where are you? stings more now

spiralstairA year a half ago, I posted an article entitled “Where are you?” — and I’m still feeling the same guilt — only magnified. At least the last time I went through this stage and wrote about it (it is a recurring issue) my Dad was there with my Mom. Now I know my Mom is by herself. I also know based on my visits and from the staff reports that she is not doing very well in the community.

I get a call two hours after I visited asking me where I am and when I will be arriving and there is something frenetic in her tone.

She will go through these cycles. I imagine her decline is much like a child’s development, but in reverse. When my son was 4, someone shared that kids develop in an upward spiral — two steps forward, one step back. In my Mom’s case, she goes two steps backward, and one step forward.

When she asks me when I’m coming out — I ask her if there is something she needs instead of telling her I was just there and we went to the grocery store. She asks if I can hold on, and I wait as she roots through the kitchen and comes back. By the time she returns she picks up the phone and out comes gibberish. I ask her if she has Coke.”Wait,” she asks. She returns and this time tells me she has Coke. I transition the conversation to tell her I’m on my way to pick up my daughter and what we will be doing this afternoon. 

I fight my logical mind and remind myself of the a poem someone shared with me a few months ago that I renamed the Dementia Request. Each time I gain a little more understanding. Absorbed.  

Dementia Request

Do not ask me to remember, don’t try to make me understand. Let me rest and know you’re with me, kiss my cheek and hold my hand.

I’m confused beyond your concept, I’m sad and sick and lost. All I know is that I need you, to be with me at all cost.

Do not lose your patience with me, do not scold or curse or cry, I can’t help the way I’m acting, I can’t be different through I try.

Just remember that I need you, that the best of me is gone. Please don’t fail to stand beside me, love me ’til my life is gone.

What’s the right level of Hospice Care for my Dad?

hospiceAll my Siblings join the call as the Hospice Care Manager visits with me. She explains the services they offer.  I walk her and my siblings through a recap of the past two weeks. All of my Siblings agree we want to start services and ask how soon they can start. The first visit happened that night.

My sister is going to fly in and will be in town when we meet with the Hospice Doctor and Head Nurse who will assess my Dad and make sure the palliative care is serving his needs.

When the visit happens, it’s been one day since I last saw my Dad and he’s weak and his throat looks swollen. We know he’s lost nearly 25 pounds in less than 3 weeks. I’m sure we made the right choice, if the teeth cleaning didn’t wipe him out, the insertion and additional tests needed to put in the feeding tube might have.

We go over the good outcome path and the complication outcome path. We do know my Mom isn’t strong enough to really help my Dad, so we discuss bringing in additional care. From experience, we know my Mom will kick them out.

We ask the Assisted Living facility to up the visits to my parents room to every two hours. We hope this might be enough because the risk of falling for my Dad is a very great possibility and will only add complications to his care.  Our only other option is to put him in their in-patient facility, but I wanted to try to keep my parents together which keeps both of them more stable. Tested. 

The boys are back in town and the care transition

My brothers arrived to help with some larger projects and just give me a break. It’s always nice to see them and I know my parents love the visit.

A few of the items I shared with my brothers that have worked for me include:

  • Walk in with your game plan ready. I plan my visits to coincide with events at their retirement home so I don’t have to tell them I won’t give them a ride to their town house. When I can’t do that, I have Plan B ready which may mean telling them I’m not able to go in that direction due to another committment.
  • Provide short explanations that can only be interpreted positively. I will share event details in a short concise manner without accusing, denying or assigning fault.
  • Take notes and put details on their calendar(s). When we make plans or my mom requests something, we record it and put it on the bulletin board. I make sure it’s on the calendar in the kitchen as well as the one in my mom’s purse (if she can find it).

Simple right?  For me those things have taken practice since it just wasn’t the relationship I used to have with my parents. It will take time.

We have some major decisions to make in regard to my parents care and safety. They don’t recognize their inability to manage and given their cognitive states, know we need to step in and help them. I’ve been immersed in my parents range of behaviors and it’s interesting to hear new perspectives on my parents well-beling when my sibling visit. They see things with fresh eyes, but more than anything, it’s nice to not feel so alone in pursuing the next steps for my parents. Validated.