It would be a big stretch to say that mom’s laughter is missing completely from our lives, but there does seem to be a lull in the frequency. Her easygoing manner is still present, she wears a smile more often than a frown and mom is still quick with her wit, when she finds it. But a perceptible shift has taken place and although I am not alarmed, I worry that it will be permanent.

Of course it is beyond reasonable that mom is experiencing some melancholy. Although she does not remember where she is living most of the time, she often begins her day knowing she is visiting us in San Diego. It makes sense for her, so accepts and starts her day with that understanding. By evening mom has forgotten her “guest” status and thinks the home she is in belongs to her. So we often just let that be her reality when it brings comfort.

But on some level she knows her life is profoundly changed.  Even if fleeting those memories strike a feeling, and rarely one of excitement or happiness, when she realizes her life as she knew it is gone. No more unescorted walks in a familiar neighborhood, knowing where your clothes belong in the closet, how to put away silverware or find a glass for water. All things that she still had the ability to manage at home and are now lost to her.

To think that on some conscious level she can realize the profoundness of her change is complete fantasy. But I know in her mind somewhere she is coming to terms with change out of her control and resignation is settled in. My fear is that once she grows accustom, that being resigned to her new life will replace being happy.

I imagine there is a fair amount of transference going on for me in this whole experience as well. It might be more accurate to say I mourn the life mom can no longer independently live than she might.  But I wish for her so many things mom will never have again as her dementia progresses.

Seeing those small bits of who she still was in her life being taken from her are mine to miss as well. Although it was past time to move her, the consequences of her move are never going to be lost on me. So it is my mission that what replaces that life is one where she is safe, content, warm and loved everyday. I hope the trade off will be felt down deep, and maybe she can know it was for the best. But again that too would be fantasy.

So we move forward as a family, happy to be together and making a new life. She does seem to be getting better every day and I hope this new life will be enough for her; one my mother deserves.  I guess the look out is for me to make sure my life is lived as one of gratefulness and not worry…. So as not to make the laughter MIA in any of our lives!

 

After I moved back to San Diego to start my new job, the carefully crafted care plan we put together for my mother fell apart. There were no catastrophic events, but a few near misses that made my siblings and I uncomfortable enough to start creating a different plan for my mothers future care.

It started with a few missed shifts by the care givers, that the service did not catch until the following day. This meant my mom had a few evenings without her dinner and medications. Then a friend called to say he came across my mom walking in a neighborhood by her house that he knew was not her regular route. When he stopped to ask if she needed a ride home mom admitted she was lost and was relieved to have been “rescued”, as she put it.

That spurred a series of additional  caregiver shifts, new rules of engagement on what type of independence she would be allowed and before we knew it came the realization that no matter how much mom wanted to stay living in her own home, it was becoming unmanageable from afar. Moms safety was foremost in our minds and remotely monitoring that was becoming a real challenge.

A second consideration was financial. My mother is in perfect health, other than her dementia, and so we have to plan for her to live a long life. We are among the millions of families who care for an aging parent and worry that financially the care your parents deserve and saved for will match their life expectancy.

As a result we started researching assisted living facilities in the cities where we live (her children) and putting Mom on a wait list at a few we deemed a match. The first one that came available was going to be the city where she would move and as it happened, San Diego came open first. So I drove up to Carson City, packed my mother, some belongings and her dog into my truck. We headed out on a snowy Thanksgiving Day to drive her down to San Diego and Moms new life near me.

It is prudent here to review a few points that made us choose assisted living as opposed to having her move in with one of us. First, she will need 24/7 supervision. Her new surroundings will be foreign to her and her capacity to “learn” a new place and neighborhood is null. Although not a wanderer she is very quick to put a leash on Timmy and off she goes for a walk, unaware that she is not in a familiar place. So keeping eyes and ears on her is critical.

This type of care at home can be very expensive. So to offset expenses you have to assume you will have caregivers during the day but be doing the care duties in the evenings yourself, which in turn ties you to the house and the senior every hour you are not at your “real” job. It is the only way it can be financially feasible.

So our plan was to get mom into an assisted living apartment, and if she could tolerate it, have her half the time with me at our house in San Diego and the other half at her assisted living apartment. Well, like most plans created around my mother, and specifically for a mother with dementia, these plans changed more quickly than I would have ever expected.

Some back story for those of you who are not familiar with assisted living facilities.  Many have a side for those who can tolerate some independence and need varying levels of assistance/care and then an additional wing for people with severe memory issues.  The memory care wing is locked for the safety of the residents, many of whom wander or have behavior issues that make them unsuitable for the general population. It is heartbreaking to know there are no options for most on that wing. Many have just moved past the point of reality to even know who they are or where they live, so it works for most very well to keep them safe.

Because there are many on the memory care side of a facility that are low functioning, I knew that was not going to be an option for us with my mother. She is still very aware of her surroundings and has enough on board for a living condition like memory care to be very stressful and upsetting for her.  We felt, and were told by most facilities, that if we just pumped up the care plan on the assisted side she would fit in eventually and be fine.

The plan has always been to eventually move mom to memory care when the time came that she had retreated so far inside herself that she would not know the difference, but not any sooner than we had too.

So when my partner Kathy and I brought my Mom to the assisted living facility for them to do the assessment (to see if she was a fit), two things happened that put a new wrinkle into the plan.

As we sat with the nurse during the assessment my mother started to get the picture that we were talking about her living there. Her bottom lip started to tremble and she looked at me and said “Am I going to be moving here without you?” I looked at her gently and said “Only for part of the time mom, the rest of it you will be with me.” She started to cry in earnest and when the nurse tried to assure her she would be fine she pointed at me and said “No I won’t because she is trying to give me away!”

Arrows could not have pierced my heart with greater accuracy than that one comment. I reached for her, as now I had started crying, and tried to reassure her that I was not giving her away and she would still be with me. Mom yelled out for me not to touch her. It was awful. So there I sat crying, Kathy was crying and my mother was crying, none of us knowing how to make this look or feel any better than it did in that moment.

Finally after the dust settled we got up to leave and walk back to the car. As we were driving back to our house, I asked Mom what she was thinking.  She said “I am thinking that I will never be happy again.” Double arrow to the heart with a gut kick thrown in for good measure.

Things got worse the next day when the assisted living facility called to say they were concerned mom might be too advanced in her dementia, and although they were willing to try her on the assisted side, they felt she may pose a risk for wandering. Even with the extra money we were willing to pay they felt she may not be easily monitored  and that the memory side might be a better fit.

An additional assessment from a nurse from a second facility came to the same opinion. They said mom is an “In-betweener”, too with it for memory care to be comfortable for her and too advanced in her dementia to be trusted on the assisted living side.

At our home in San Diego I had already moved my home office, out into the toy hauler that I parked behind the gate on our side yard, to make room for Mom to stay with us. Because we live in an old San Diego neighborhood the houses have big lots with small houses….. our house is 825 square feet to be exact. It is also one of the more trendy and expensive areas of San Diego, so moving up to a bigger residence in this area is not feasible at this time.

The house we live in is lovely and the yard is big and it’s a perfect fit…for two people. We never imagined it would be a enough room to bring mom to live with us permanently. But life had other plans for us!

So here is the new plan…Mom is staying with us. I don’t know how long we will be able to manage or if we are crazy to even try, but for now it is working out pretty well. My hope for my mother to have more space and independence in her old age is lost on her.  She is very content to be with us and seems not to notice how small the space is, or if she does it seems enough for her for now

More moments with Marion will come from this new adventure and hopefully my life and my relationship will withstand the challenges we are sure to face.  For today I am grateful that I have a partner with a giving heart that is full of love and compassion, so that we can keep my mother close and most importantly, happy.

 

 

 

 

 

 

 

I am fortunate in life to have some of the most amazing friends. As I have much to do before my move back to San Diego, a good friend flew up to help me get some things accomplished and give me company on my drive home.

My friend was getting cleaned up to join us for dinner when my Mother walked past the open door of the guest room and looked inside. My friend was standing there after a shower with her hair wet and getting her outfit organized when my Mother commented “There she is!” Our guest moved her hand through her hair and said “Yea I am just about to do my hair” to which my Mom replied “Well that is a good place to start” then walked away. Thankfully my guest has a great sense of humor…she will need it around here!

My Mother came down the hall looking for me and was crying asking about my Dad. Typically she is not quite so upset, as if she knows the answer I am going to give her and is just looking to me for clarification or a reminder. This time she was clearly very upset. Mom reacted as if she had just heard the news and was coming to me for confirmation of news she had just learned, that her husband was dead.

It was so sad and I was helpless to make her feel better. I hugged her standing there in the hallway and told her how sorry I was that Dad was gone. I said “Mom I wish there was something I could do to make you feel better, but I know it won’t change anything.” Mom replied “No there is nothing anyone can do.  I guess I am just going to feel sad until I join him.” We stood there for a minute with my arm around her shoulder and then she looked at me and said “Thank you dear for listening.”

I suggested a swim and she walked down the hall to her bedroom to change into her suit. These are the times that I will regret not being with her, to help her get through a difficult spot. But I know she did so without me before and will after I leave. But I was thankful I could be here for her just one more time.

After a very long search I finally got a job I wanted back in San Diego. My excitement about the opportunity was a bit tempered by my having to leave Mom. I knew the day would come and yet it is still a bittersweet time for me. I have so enjoyed being with my Mother but my life has to be lived as well and my dreams pursued.

The comfort comes in knowing Mom wants to stay in Carson City and so I don’t feel like she is being left behind as she is where she wants to be. Mom will have full time caregivers during the day and a dear friend of the family has recently rented a room (she is a professor in the Nursing School at UNR) so she will have company in the evenings as well. It all seemed to fall into place perfectly just as I was offered this new position that requires me to move back home.

Mom has been privy to the conversations about the new job and seems happy for me to have a new  adventure. It is hard to tell if she understands that I will no longer be here always or if she ever remembered that I was here for any period of time longer than a few days in the first place! It seems she thinks I am always just here for a visit with no concept of how long it has been or the time we have shared together.

I long ago came to terms with the fact that she is never going to fully appreciate the time we have spent together or hold onto any of the memories we have made. Those are for me to have and to cherish but I do know she has benefited from them in the moment. It is a mixed blessing in that she will not have to go through any sadness at seeing me leave or experience any feelings of being left behind. To her it will be another visit ended, goodbyes with promises to see each other soon and then she will forget I was ever there before I get a mile out of town.

Mom was getting ready for bed when I happened to look down the hall towards her room. I could see Mom through the open doorway and she appeared to be a bit distressed, so I called down the hall asking was she alright. Mom motioned for me to come to her so I walked down the hall into her room.

Once I stepped inside her doorway Mom looked at me and said “What happened to me?” Puzzled I asked “What is wrong Mom, why are you asking that?” She looked a bit stunned and said “I can’t remember anything! Something must be wrong with me.” Then she turned to look in the mirror over her dresser and as she stared at her reflection she said in an alarmed voice “I looked in the mirror a minute ago and I did not recognize myself! How did I get to look like this? I don’t remember when it happened.”

I am never sure at times like this if Mom is having a very lucid moment or a very confused one. If she is stepping out of confusion into a world that she no longer recognizes because she was not mentally present for it or if she is slipping further away.

In this instance I sensed it might be the former so I tried to make light of it so as to ease her alarm and I said “Mom you got this way over time, you are eighty years old and I think you look great for eighty.” She replied “Well you must be drunk because I look awful! I don’t even recognize myself.” Then she turned to me and said “I never would have known it was me if you showed me a picture of myself now.”

Then she asked “How come I don’t remember?” I reminded her that she has an issue with her memory but that she is seeing a doctor and taking medications that are supposed to help. Mom moved to look in the mirror again, still with a look of disbelief on her face and said “Well I hope I forget that I look like that!”

It feels like I have been fighting to move through molasses these past eight months in my efforts to find a course of care that creates a balance.  One that works for Mom and one that I can do consistently with minimal stress to my daily life. Trying to find the path, create a life were we can live in harmony, or at best with minimal resistance from my Mother, has been elusive.

I am not complaining nor am I surprised by the weight of it, as it was expected. My experience with Mothers dementia has been one of many years and so the challenges were known and most of them familiar. But certainly there have been so many variations, twists and turns in her reactions, her behavior and her frustrations, that in no way could all of it have been anticipated….that is the gift and the curse of dementia.

Like all paths we follow, you eventually find a level place, a clearing or a beautiful view that gives you pause. These bits of change give us respite, a new perspective or an understanding of why we make the journey in the first place. They are changes we know will present themselves along the way but typically we do not know around what corner they will come, but still we press on hopefully.

My journey found such a place when my sweet Mother showed up today. She came up to me as I was doing dishes and put her arms around me, kissed me on the cheek and said “I appreciate that you are here with me to keep me from being so lonely. Thank you.” Then again, after dinner she turned to me and announced “I know you are busy but I am glad you took the time to spend some with me.” It was remarkable to me that she was so full of sweetness and consideration until I reminded myself that this is the Mother I have always known…she has just been lost for a while.

Finally as I lay in bed reading, there was a tap at my bedroom door. I answered for her to come in and Mom opened the door, popped her head in the room and asked if I had to go home tomorrow back to San Diego. I answered “No Mom I will be here for a few more weeks.” She smiled broadly, clapped her hands together lightly and exclaimed “Oh good for me that makes me happy! Well goodnight dear.” and she gently closed the door and was off to bed.

And all at once I knew I was in the clearing, I felt the level ground and the weight of the journey was so much lighter.  My heart was touched and I sensed the familiar in my life with my Mother, the comfort and the joy of being home…..If only for a day, it was one where I was once again welcomed home.

In the many years my Mother has been dealing with her mental decline I have never seen her express any interest in shopping for clothes. Typically you have to drag her into a store to look for new attire and Mom will not only fight you on the fact that she needs new clothes but will practically have an apoplectic fit at the prices, no matter how good they are!  Then after the purchases arrive home into her closet or drawers, she never chooses them to wear as Mom does not recognize them as belonging to her….. The whole exercise is a bit of a drain.

So it was such a pleasant and fun surprise to find Mom perusing the ads in the local paper and joyfully land on a page of discounted summer tops with great interest. Mom reviewed all the sections and the prices, then turned to me a little embarrassed and asked me if I could help her figure out how she could get a few of her favorite choices. I was thrilled!

I took out my laptop and pulled up the website for Kohl’s and we searched for the corresponding items she had selected from the ads in the paper.  Mom and I found those and a few other selected items on the computer and she was so excited to be able to choose and purchase them online immediately for, as she exclaimed, “Such wonderful discounted prices!”

My Mother is extremely frugal so after the rush of the purchase I had to spend about 30 minutes explaining her finances, how much money she had in the bank, what her monthly income was, all in an effort to assure Mom that she could more than afford to buy four tops for just over a $50.00 investment!

Mom will receive the tops in mail and like most new purchases, I will probably have to pull them out of the closet to remind Mom they are her new clothes and encourage her to try them. But that matters little compared to the fun we had narrowing down her selections, viewing them in various colors and the excitement I rarely see in Mom choosing something new and fresh for herself. It has been such a long time since we enjoyed time like that together.

Mom may have received the great discounts but for me the whole experience was priceless!

I had the rare occasion of my Mother coming out to the pool to chat with me as I enjoyed a late night swim. Typically she is asleep by my swim hour but on this night was replete with comments on the beautiful evening and the lovely moon that glowed above us.

After awhile I got out of the pool, dried off and we walked back into the house and began our lock up routine of the night. Mom asked as I locked the front door “But what about Pat? Does he have his key?” I reminded her that Dad was no longer with us and she repeated her mantra of “I guess I just don’t want that to be true” and then we proceeded to walk down the hall together.

At my bedroom door I turned to say my goodnight when Mom stopped and asked me “Why does this always happen to me at night?” I was shocked at her ability to remember the timing of her lapses but I replied evenly “Because of your memory problem you get a condition known as Sundowners. Your brain works so hard all day that at night it just gets tired of trying to keep everything straight so it kind of gives up. Then you get more confused.” Mom said “Well thank you for telling me that Dear. I guess I just have to get used to giving up at night and just go to bed.”  I said “It happens to everyone your age who has a memory problem Mom so I don’t want you to worry about it.” She smiled at me and said “That was very generous of you, thank you. Goodnight.”

Then she walked down the hall to her room and I heard her say to no one in particular, “But I still don’t think I am ever going to get used to not waiting for him to come home. That seems impossible to me.” ….. I am sure she never will.

The new medication regime for Mom brings a daily shift in her mood and cognition. On this particular day she seemed a bit out of sorts so I offered to take her on some errands and she was happy to join me. When back at the house, I gave her lunch and then she seemed to want some privacy, so I went to my room to catch up on some correspondence, and reading I had been saving for some down time.

I gave it a few hours and then went about the house looking for her and discovered Mom on the porch lounging in the shade. I assumed she was resting but her expression was so forlorn I asked was she alright. Mom replied “No, I really am missing Pat.”  My heart went out to her and I said to her gently “I know Mom, it must be awfully hard for you to not have him after so many years together. It makes sense you would miss him terribly.” A few hopeless tears ran down her cheeks and she quietly wiped them away. Then she replied “Well thank you for acknowledging that for me. It is hard, but I guess it will be my turn next.” I smiled at her, trying to lighten the mood and said “I hope it won’t be anytime soon!” Mom looked up at me and said with a bit more optimism, “At least not before some Ice Cream!”