Thoughts on a Birthday

I did not think I’d be adding to this blog, now that my mother has passed away. Today, however, would have been her 92nd birthday. We often laughed at how her birthday frequently landed on Friday the 13th. Without realizing the significance of the day, I chose her favorite over-sized sweater to wear. As I read the news, I caught myself imagining what she would say to the current political situation and the irritated face she would make. I swam in the pool this morning and remembered how foreign my exercise routines looked to my mother. I silently replied to her that keeping my body strong is important to me, as if I were still a teenager needing to defend my position.

I am so sad that she (and I) had to endure her final years of pain and confusion: the indignities of having to be cranked up out of her wheelchair with a lift and the irrational fear it caused every time, the desperate scrambling to think of something to say that might hide her inability to follow the conversation, the loss of her ability to read or to think critically. On my part, it was a relentless source of grief and pain to watch the mighty person she had always been slowly dribble away, leaving just a shell.

So, almost a year after her death, I am happy for her. That may sound strange, but I believe that her soul is exuberant to be free of that failing body and brain and bouncing back to the full and fruitful person that had been imprisoned inside of it. I only wish she and I could talk again and I could hear her latest projects and friendships on the other side.

Perhaps you do not believe there is life after the death of a human body. I respect your view, as none of us has first-hand knowledge of that. Perhaps you view life after death as existing forever in either heaven or hell. I respect that view as well. My own belief, to a large degree learned from my own mother, is that she is residing in a middle world of spirit, aware of much more than any of us can see while on the earthly plane. She is probably tuned in to me right now, because I am thinking about her. She is probably hanging out with my father and her sisters, looking back on what all of them learned from their last life on the planet. She may be planning her next try, in her next incarnation and with a new mixture of friends and family to travel once again together. I cheer for her to be this new adventure and when my own life is over I anticipate sitting down together for a lot of catching up.

Happy birthday, Miriam!

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Final Post

Next week, we will be having my Mother’s memorial service at a local nature center. She finally passed away in April following a stroke. I felt relief for her that her long ordeal of dementia was finally over and that she could move on at last to the next thing, unencumbered by the body that let her down. I know that her belief systems assured her that our souls go on without the body and are freed to wander through time and space in ways that are difficult to imagine on the earth plane.

Mother was a metaphysical explorer in the second half of her life, and I spent many years discussing the concepts with her, reading her books, and entertaining lots of far-out ideas. I know she supported a group called “Compassion and Choices” that advocates a right to dying with dignity. Unfortunately, in Michigan, there is no such right and once she was well into dementia she would not have been allowed to make such a decision on her own, anyway. It was heartbreaking to see her hobbled by a brain that no longer served her well. For the last two years of her life she had lost the mental ability to tell her knees to bend and sit, so she could only be raised and lowered into her wheelchair with a hoist that terrified her.

In the almost three months since her death, my sister and I have sorted through her things and made decisions as to who will keep which items as remembrances. It was a bit painful one day when they removed most of her stuff from my home to gather it in my sister’s basement for distribution. I wasn’t ready. I sort of needed to sit with it and say goodbye on my own terms. I got through it, though, and am keeping some items that are special to me. Her extensive library of spiritual topics stays here so that I can occasionally browse and remember our discussions in her last two decades.

The memorial service will bring closure for the family. We already gathered to scatter her ashes in the river, so this will be a tribute to her life. I hope people come to remember her. Most of her contemporaries died before her so perhaps some of their children may come out of respect. I have not attended many funerals of my friends’ parents, so I shouldn’t be surprised if they do not show up. Even Mother had given up attending funerals in her last decade. I think it was painful and she did not like the risk of breaking down into tears in public.

Mother’s sister, Arlene, who wrote to her faithfully throughout her years of dementia, would have been brought out by my Pennsylvania cousins, but a month after Mother’s death Arlene was diagnosed with cancer and she passed away a few weeks later. Ironic. I believe Mother was there to greet Arlene and maybe even left early in order to be there first. One of those things you won’t know until it is your time, I guess.

So, one last public milestone to endure and then I can retreat to my private grieving process, on my own time. My mother was a remarkable person and I look forward to remembering her in her stronger years and feeling grateful for what she gave to us all.

Thank you, to my blogging colleagues, for your support through this process. I’ll continue to read what you write and think of you as friends.

 

 

 

 

 

Waiting Game

I thought my mother’s stroke was the beginning of the end. It may still be, but in the last week she has recovered her ability to swallow to some degree, although it exhausts her. The speech therapist is working with her five times a day to practice it, and they have started administering her normal medications, crushed up in a smooth solution.

I guess this is just another exercise in learning to accept whatever comes. I think both my mother and I are ready for this chapter to close, but perhaps there are more to come and maybe even better ones, who knows? I don’t know how many times I’ll have to go through the stages of grief again, only to find that we aren’t quite finished. It makes me feel very callous when I feel ready to give up on it.

My siblings all are have their own emotions to sort though. The brother and his wife who live the farthest away are feeling a lot of guilt that they haven’t been around much over the last few years, and they feel they need to come down to spend entire weekends sitting by her bedside. That makes my sister and me look at each other and question whether we are doing enough. There is no grand judge to make a ruling on this, so I am just trusting that what feels right to me will be right. Fortunately, there do not seem to be any pointing fingers or blaming judgments flying between family members so that is one stress not present.

My biggest problem is not knowing at what point my mother will really wish I was there holding her hand. Certainly 24 hours a day is not possible, but I’d be happy if I were there at the crucial moment. She is just so tired. She sleeps 99% of the time and the exertion of keeping her eyes open is almost too much to bear. I wish I could help.

Something New

I haven’t posted for 5 months, because it has been just the status quo with my mother. A steady, gradual decline in her cognitive abilities, various mishaps with lost or broken hearing amplifiers, glasses, teeth, wheel chair.

Tonight, 2:45 am, I got that call I’ve been bracing for. She’s had a stroke. One side of her face is droopy and her speech is garbled. They wanted my permission to rush her to the ER.

I don’t like this part of the healthcare power-of-attorney job, but I have a very calm approach to it. I asked what would be done at the ER. They said a CT scan to determine if she’s had a stroke. I asked, “…then what?”, and they said, “Uhh, I’m not sure.” My thought is a 91 year old with advanced dementia is not going to be happier by being rushed to a hospital in a panic. I called my sister to confer and after I spoke to the nurse practitioner on call, I confirmed that we would like them to just keep her quiet and comfortable. They said she doesn’t seem upset or ruffled over the situation.

In the morning, we will talk to the head nurse about bringing in Hospice. I am new to this, but I would feel better having someone sharing our goal of comfort and peace at the end of life to be advising us.

Some Days Are Just Like That

I don’t know if it is a chemical thing, or processing going on in my brain, or just what we used to refer to as “bio-rhythms”. I have just been out of sorts lately. When I am like this, even the not-bad stuff has a murky pall hanging over it and I have this lingering feeling that things are falling apart. It is not logical. It is really annoying. But it is still present and it grabs me and holds me down.

A few bad things have happened, not to my mother, but within the family. My daughter was fired from her job because her new manager did not feel she was in line with her new, unarticulated vision. She couldn’t justify a performance-based firing, so she was honest about it. It was probably for the best, but my daughter is hurting, lonely for her friends at work, and worried about her financial future. We are hurting for her and mostly powerless to help. We’ll scrape together money when/if she needs it, although I am anticipating all the awkward strings that come attached and the resentments they cause.

We had a large, unexpected repair bill that should not have occurred and we are angry and frustrated by it. We feel a bit betrayed that a very expensive purchase that was giving us a lot of joy suddenly turned sour.

Mother is doing fine, although the nursing home recently changed her antidepressant medication because she’d been getting very upset and weeping. It’s been a couple weeks and when I’ve seen her lately, her eyes seem watery and rimmed and she is very sleepy. I don’t know what I should do – anything?

There are good things, too. My two bands are enjoyable and gearing up for fall concerts. Our church fundraiser went well, with huge effort by my husband. Everyone is healthy, with the exception of my sister’s Parkinson’s that is slowly progressing. She told me about it yesterday and it slid on top of my other worries like one more pancake on the stack.

It all just makes me feel heavy and dull. I read a book I bought this week, but it was probably a poor choice. It is called, “Room”, and is about a boy raised for 5 years imprisoned with his mother in a shed by the man who’d abducted her. It gets past their escape and moves on to the adjustments he has to make as he is introduced to “outer space.” It was a good story, but it also left me with a creepy feeling. I think I need a good dose of comedy or something to bring me out of this mood. People need me and I can’t sink into self-centered depression.

The End of the Money

My mother is 90, and she is almost out of her life savings. We knew that, in Michigan at least, there is a safety net when one gets below $2000 in their bank account they are allowed to apply for Medicaid. This will subsidize the cost of her living in the nursing home (a.k.a. Medical Care Facility) from now on out, using her social security checks and giving her $60 a month for extraneous expenses.

In order to apply, my sister and I had to use up the last couple thousand dollars of her savings before mid-September and get the application in at the first of October. The money may only be spent on my Mother’s needs. We had to confer on what she may need in the future that we could buy ahead of time. We’ve already set up a trust for her funeral expenses. The nursing home provides most of her day to day supplies, and she does not have that many desires or even space for “stuff.”

We measured her small corner of a room and went out to purchase a new chest of drawers and free-standing bookshelf to hold her photos and little nick nacks from years of travel and experiences. Extra clothing for when she wears out what she has can fit into the drawers. She is wheelchair-bound so the soles of her shoes do not wear out, but the shoes are beginning to look pretty ratty so we found a new pair that may carry her for several more years if necessary. It apparently is against the rules to donate the last bit to a charity she cares about. It must be spent only directly on my mother.

It feels odd to spend her money freely. It would be used up immediately with one more month of nursing home fees, with not enough left to pay for that month. So, now we are looking for whatever else we could buy for her to spend it down. I bought magazine subscriptions and extended her local newspapers. My sister handles the finances and keeps asking me if we could buy her this or that. At this point, I’m just going to say, “Spend away.” It is such a strange situation to have to spend the rest of her money, whether she needs things or not. I am really grateful that Medicaid will help her from now on out, because without it we’d be using up our own life savings.

Stuttering?

Here’s a surprising new development. This week I was sitting with my mother, chatting comfortably about what was “new”, and as she attempted to remark on something that caught her attention out the window, she suddenly got stuck on a syllable and began a fast staccato stutter.

For a moment I thought she was mimicking someone or trying to be funny. It went on for several seconds before she was able to move on to the next word.  It sounded like Max Headroom from the 80’s TV show, kind of like a CD skipping.  She did not seem to recognize that something weird had just happened.

This was a little alarming to me, but I tried to act like nothing unusual had happened. When I got home, I googled “dementia and stuttering.” What came up in most of the responses was a form of dementia called Frontaltemporal Demantia, or FTD. It is less common that Alzheimers or vascular dementia, but does affect speech and motor skills in this way.

So, suppose Mother has this FTD. There is no treatment and the prognosis is pretty much the same as other types. The genetic connection is possible if there is a family history, but there is no known cause identified. Does it matter to know if this is it, if it does not change anything we do or expect to happen?

Grouchy Week

It has been a little disheartening this week, visiting my mother. She has been so agitated and angry, with little clue as to why. My only recourse has been to work on distracting and cheering her up and so far I have been successful. I’m beginning to feel like I am her only lifeline to peace and it is a bit overwhelming.

Yesterday I arrived just as her caregiver was waiting by the bathroom door where Mother was moaning on the toilet about whatever unhappiness she was experiencing. Whitney, her regular helper, said, “Guess who is waiting to see you when you are done?” and it successfully broke Mother out of her rhythmic pattern as she found out the answer was “your daughter, Nancy!” Soon after that, while I sat waiting on her bed, she slipped back into her grouchiness and began repeating over and over, “I hate you! I hate you! I hate you!” Oh, poor Whitney. I wonder how often she is subjected to this kind of abuse.  She seemed to take it in her stride and said, “It’s okay, you’ll love me tomorrow.”

Once Mother was back in her wheelchair and Whitney had gone away, I was able to get her quieted down and as the tears ran down her cheeks I tried to get her to articulate what was bothering her. Was it pain, sadness, some bad experience she could express? She seemed so frustrated, but unable to remember or speak what was upsetting her. I pushed away the anguish I was feeling for her and focused on turning things around. I opened the magazine I’d brought and got her looking at the pictures and sniffing those annoying cologne samples between the pages. When she’d broken the pattern of anger and tears, the world looked better and we took a walk down the hall to listen to a musician who was singing for the residents in the dining room.

Now and then her eyebrows would begin to furrow and I could see the dark clouds forming so I took preventative action and distracted her with something new. Just like  handling a baby, I thought, after a week visiting with my 4-month old grandson. But, like a visit with an infant, I was able to leave her an hour and a half later smiling and content. I tried not to think about how long it might be before her caregivers once again had to deal with her bad moods.

As often happens, on my drive home a depression began to settle over my spirit. There is not a happy ending to this story, just a slow ride to Worse. So, just as I did for my mother, I worked on distracting myself with happier things and moving on with my life, such as it is. My own world, minus my mother’s agonies, is generally very pleasant and peaceful. Focus on that.

 

Interpersonal Relations With Dementia

I was over visiting Mother yesterday, joining her at concert by a little bell choir from a local church, in the dining room. She always loved music (and performing), so I figured we could enjoy it together.

As we settled into our places and waited for the musicians to set up, some interesting interactions began among the residents. First, apparently we had been placed at the table where some other residents usually sit for meals. When those residents came in, they started trying to push their wheelchairs in between and one bumped mother’s chair from the back. She got irritated and I explained into her hearing aid that it was just an accident. She made a face and clearly did not believe it was unintentional. Another resident scolded the ones trying to squeeze in, telling them there was not room.

The caregiver came over and tried to smooth it over while my mother attempted conversation with the lady in front of her. Her nonsensical sentences were interpreted by the lady as insults and she started frowning and calling back over her shoulder in anger. The caregiver got frustrated and asked why everyone was so agitated today, and moved the cranky lady across the room. Meanwhile, my mother keeps talking to people around her and I was worried she’d offend someone else. The pair who were trying to squeeze into what they thought was their rightful place was still standing next to us, and Mother started complimenting the lady on her blouse and her sparkling eyes. That seemed to work, because she turned friendly and they were now great friends.

They squeezed through the space left by the woman who moved across the room and lined up against the wall. The woman’s son showed up with a nurse and they commenced to wheedle her into taking her medicine which had been crushed into a little cup of pudding. Apparently she’d been refusing and they were chasing her down to get her to take it. My mother tried to become part of that conversation across the room as well, and I was relieved when the bell ringers finally began their music. Mother did not pay as polite attention as she always insisted we do as children, but instead her eyes kept wandering the room looking for people to comment on, loudly. I kept crossing my fingers that she would not start another international incident.

Indignant Day

Boy, my mother was so angry today! I showed up to her room and she was looking out her window into the nice courtyard where people were sitting in their wheelchairs enjoying the fresh breezes. She looked at me wide-eyed and said, “I’m so glad you’re here. It’s just terrible!”  I inquired what was terrible and she looked at me like I was crazy or something. “Those old people in our front yard!”

I laughed – I couldn’t help it – and said they were just enjoying the nice day, and would she like me to take her out there as well. She furrowed her brow and said, “NO!” For the next half hour everything I suggested got that same response. I tried to stay light hearted and change the subject to something more positive. I told her I’d brought new pictures of her new great-grandson that she might like to see.  She gave me a hard look and said I must be trying to trick her. Would she like to see them? “No.” Look at this cute baby. “No.” Should I put it up on your corkboard? “No.” Maybe I’d better rearrange the pictures to make room. “No.”

And so on. After a while, her mood began to lighten up and we got back to normal, but not until I’d closed her curtains so she couldn’t see those intruders “in her front yard.” I took her on a stroll in her wheelchair and then down to the dining room where she has been moved to a new spot at the table so she is not facing the lady who seems to get her riled up. She teases my mother about her occasional crying spells and it makes her weepy and mad. They assigned a new resident to sit in my mother’s normal spot and I helped introduce everyone. Hopefully this new arrangement may make her life seem more in control.