A journal of healing

Archive for the ‘death’ Category

The Donut Hole and other issues of aging

donut

I do not usually think or worry about getting older but lately it has been on my mind a lot. There are a couple factors why. They are infuriating because it is all beyond my control. There is nothing at this point I can do to rectify the situation except speak out. For those who are under thirty, beware and prepare. You will get screwed when you get to the point of retirement. Even if you are a long ways away from that, it will come, and sooner than you think.

Here is the first shock. Health insurance. You think you have it all covered with Medicare. Wrongo! We pay all our working lives into a system that is supposed to take care of you when you retire. It does not. We even protected ourselves with supplemental insurance. My husband has reached his “donut hole, which is a sugary way of saying he is getting screwed. His pharmaceutical needs are now not being completely covered. He has to pay over $3800.00 out of his own pocket before his insurance will again pick up the major cost of his drugs. One of his drugs cost over $400.00 to refill, and granted it was a 90 day supply, it still is huge. This is one of his drugs. We are ok, but it was a shock and it angered me. Actually, it pissed me off beyond anger. When my turn comes it will be holy hell. One drug I am on is over $1900.00 a month. Won’t take me long to get out of the donut hole….. But then Medicare probably won’t pay for this drug. That’s four years away.

We were lulled into thinking that Medicare was great because his prescriptions up until this point were almost being paid for completely. What do people do on limited incomes? If you are thinking when you retire you can live on Social Security, think again. They take taxes and the cost of Medicare insurance and your supplemental insurance right off the top of your check.

Here’s another shock. I cannot retire until I am 66, not 65, 66! Anyone born after a certain age has longer to wait until they can get their full social security. AND…..if I want to work, I have a limit as to how much I can earn before they take money away from me. My husband can make no more than about $15,000.00 a year. He is a substitute teacher and so it works for him, but it is not right or fair. I cannot touch my social security because I make too much money! Even though I paid into it and I am eligible to take it at 62, it would not be worth it.

It would not be worth it because it is taxable income. We do not make enough money to have tax loop holes to protect us so every year we get screwed by taxes. As you get older, there are fewer things to deduct like children and property. The only savings grace is if you deduct your cost of medical expenses. It has saved us every year, but we still have to pay more at the end of the year.

Here is another gripe. My mother-in-law is in a nursing home. She is on hospice. She requires no special medications or interventions. She can still transfer herself with assistance. She mostly sits in a chair or in bed all day long. It is a horrible existence and yet she holds on. She has Alzheimer’s and comes and goes with awareness. The facility she is in is like a warehouse of elderly folks just waiting to die. My in-laws were not rich, but my father-in-law was frugal and put money away. She is private pay. It costs $15,000.00 a month for her to reside where she does. There are cheaper places but you get what you pay for. If she was Medicaid, like the majority of the patients in the facility, it is about half the cost. Same place, same care. My father-in-law’s wishes were to each of his children to have an inheritance and he provided for it. But I think my sister-in-law has tapped into that, but that is a whole other story of getting screwed. My point is, they saved all this money and had a good life. Because of that, my mother-in-law does not qualify for government assistance and is being unfairly charged. My husband’s cousin is a lawyer who works in the nursing home field. He says that’s the way it is. His mother is getting the same screw job in the facility she is in and he cannot do anything about it.

Here is the wonder of it. For $15000.00 a month, she has a tiny room with a bed, a TV and a large chair. Activities are to go down to the nursing station and hang out in your wheel chair. When we visit, there is usually a ring of folks, mostly sleeping, in their wheel chairs or on the few big chairs in the hall. There is a TV playing but no one can see it. They get ushered into the dining room, fed crappy food that stinks, and then wheeled either back to their rooms or a chair in the hall. They sleep most of the time. $15K a month. Think of what you could live like with that kind of money. The staff are very nice and treat her well but not all the time. They steal her candy and other gifts. And we never know whose clothes she is wearing. One time, not one item was hers that she had on. She looked fantastic, but it was ironic. We never found out how or why she had someone else’s stuff. This is her life now. She does not know us most of the time. She did not get to say good-bye to her husband of 62 years when he died last summer. She sits in her chair and sleeps. She does not eat but will drink her nutrition drink. She is slowly wasting away. All this for $15000.00 a month.

This is something else I am noticing. There is definitely age discrimination in the workplace. I have been watching the blatant shift in my organization. When I started, the median age was closer 40 and many people working there had over 25 years in. When the new CEO and crew can on board, many retired or were asked to retire. Those who remained have been reassigned and it seems like they are making their lives very uncomfortable. One guy who started with me was moved from an auditing position in Corporate Compliance to Quality when the new director came on board. She is in her late thirties and a friend of the new CEO. His new position required that he be able to do home visits. Even though he is a nurse, he had not been practicing nursing for over twenty years or more. He was 71, but very active and not too many people would know how old he is. He was a good auditor, but let go because he could not fulfill his new job. They knew that going in and they were hoping he would retire, but he didn’t. I will not be surprised if there is a law suit unless they gave him a package to go. I have seen the arm twisted with a few other folks as well who seem even more obstinate than smart. But if they want to work and can physically do their job, leave them alone. One lady says she keeps working because it keeps her active and feeling needed. She is 76.

I know in my heart that I have no desire to work past 66. I can retire this year, but the health insurance will keep me working for at least three more years. My biggest fear is that I will die before I have a chance to spend all the money my husband and I have put away for “our retirement.” And my other fear is that by the time I can, the taxes and the cost of living will be so prohibitive we will not be able to enjoy our “sunset years.” (What a horrible name) It is a gamble that the government makes with everyone. They are hoping you will die before you start taking you social security. That is why they keep pushing the age up. They also tax any 401 or other retirement funds you start using heavily until you reach 70, hoping you won’t touch that either. And that’s because they do not want you to have to use Medicaid. They want you solvent and paying for your nursing home care.

Donut hole is not an appropriate name for the real situation. It is not sweet and soft at all. Getting old is a real bitch so enjoy what you can now.

 

 

Being controlled

Kitty

Ever have a dream just before you get up in the morning and know that it is going to stick with you for the rest of the day? I had a doozie this morning. The dream demonstrated my issue of not having control in my life and the reality that we never really do have control. And the best thing any of us can do is to stop fighting that very thing and trust that things will come out ok.

And for the most part of my life, this has been true. But, it does not always seem like it when I am in the clutches of something that has me wrapped so tight that I snap at things and I am not a very peasant person. I do not think there is a being in the world that does well being captured and under the control of something that seems beyond their ability to change.

And that brings me to a situation that I have along with many other people and that is being under the control of having to have a medication in order to survive. It goes hand in hand with having a disease that is inherited or brought on by no fault of the being. There is a lot of that out there. And until you have something like this or know and love someone who is in that situation, it is hard to understand what it does to the person.

I am writing about this because of something that happened recently. I have friend who has MS. She is well controlled most of the time. But she has flares and when she is in the clutches of a flare, she has a tendency to be a bit sharp. Normally, she is bubbly and personable. The last year has been terrible for her and I have seen the decline in her over the last couple of years.  She is on very expensive drugs to help her maintain. She just recently lost her job and it was due to her inability to get the work done and in her inability at times to get along with her team. No one on her team seemed to be able to look past her anger and forgive her for being nasty. She was letting the disease control her and she really needed some help with that anger.

I also do not think people understand the warrior she is. Every day she got up and came to work, even when the pain was so great she would have tears. No understood her humiliation when she had an accident at work because she could not get to the bathroom in time. It became a joke around the “watercooler”. And yet, she would come back to being her funny self when the pain was less and make jokes about her situation. Now, she has no insurance and no income and I pray she will find help.

I realize now why old people sometimes are just very nasty. As the body deteriorates and pain becomes your constant companion, it is very hard to pleasant all the time. Alcohol is a method for many in pain which then leads to alcohol issues. Sometimes, anything will do as long as it takes the pain away.

And this brings me to the point of being controlled because you rely on a drug to survive. We live in an amazing time that there are so many drugs and procedures to keep people going who in past times have died painful deaths. I am grateful for the medicine I have available that twenty years ago did not exist.

But at what cost?  Along with thousands of people, I am in the control of these drugs. I will need them for life. One keeps my blood from clotting. The cost is I can easily bleed to death. The others are for my Psoriatic Arthritis and the side effect possibilities also include a higher probability of death due to cancer. The most recent drug I am on is causing me to gain weight, which is the last thing I need. But it is a side effect and out of my control. The drug I was one before, allowed me to lose weight and the one before that put weight on. This new drug is not doing anything for my psoriasis, and so I am beginning to break out again and it also doing little for the pain in my joints. But it is working on my gut issues. I have to stick with it for at least six months before we try something else. Unless like the last one, I have an emergent issue like an inflated blood pressure or some other reaction. Again, all out of my control.

There are so many debilitating diseases out there and more everyday being diagnosed. It is an amazing world we are in if you can get the medicine you need in order to survive. This brings up the huge topic of insurance which is the king of control. I will never understand how an insurance company can refuse their insured drugs prescribed by a doctor. Who the hell are they to make that decision?  I have often had to wait months for a decision on a drug that my rheumatologist wants me on and all the time there is deterioration going on in my joints. This last time while waiting for my approval, my two toes started to curl up so bad that shoes were becoming a problem.

I am writing about this in hopes that someone will read this and be kinder to someone who is in pain. I am hoping this will help people to see past the nastiness and be patient and understanding. When someone is pain, it is easy to react in hurtful ways without even being aware. But it is not about you. It is like being a captured animal and the cage is pain.

very close kitty

The Sunset years

sunset

Although the alternative is not what I want, getting older is a bitch. I don’t feel myself aging, but I know I am. I am not sure anyone feels it like they do with a growth spurt at 11. I see the physical changes reflecting in the mirror. However, I think back to my grandmothers when they were my age, and I certainly do not think I look as old as they did. I know I was looking at them with a child’s eyes, but even in photos they looked and dressed so much older. I love the fact that my age is now considered the new forty.

All this thinking is being brought about because of my poor mother-in-law. (MIL)  She is in a nursing home with a broken pelvis and severe dementia. My sister-in-law has finally had her admitted as a hospice patient. She is 91. She has not eaten now in almost 2 weeks but they are giving her a supplemental nutritional beverage. I am not sure if she is consuming that either. She lies in bed and mumbles most of the time. Some days she is a bit more coherent. Other days, like last Wednesday, are terrible. They found her on the floor and no one is confessing as to what happened. She is alone as her three children harbor ill feelings about her, especially her sons. She was not always a nice woman and I will let it go at that.  But still, it is a horrible ending of her life.

In my in-laws situation, they retired at 55. My FIL worked for the post office and they were very frugal. They traveled and lived in Florida until eight years ago when my MIL had breast cancer. They moved up here to be closer to the family, especially their daughter. My FIL was not sick for very long before he passed. My MIL’s dementia progressed rapidly in the last  years and she should have been placed in a memory care facility years ago. My FIL probably would have lived longer, if not happier.

Now, because she is private pay and has money, her options of care are extremely expensive and limited. Believe it or not, she would have better care if she was living with one of her children. But no one would do that. My brother-in-law did take my father -in-law in for his last healthy months this summer. She cannot go to certain hospice facilities because her needs are covered at the nursing home and because of her private money, she does not qualify for a comfort care facility.

My husband is partially retired. I work my ass of at my job and I am not ready to retire but I am also coming to the realization that time runs short. It is true that as you get older, time seems to speed up. We have spent our entire lives saving and creating nest eggs for our old age. WE have pensions and SSI and savings and annuities and stocks. Why? So that when we get old, it will be there for us. That is what THEY told us to do. And if we die tomorrow, all of that will be for naught. It will go to some folks but we will not have enjoyed the fruits of our labor. The thought of it going to pay for ridiculous nursing home costs so I can lay in bed and rot is incomprehensible.

This morning as I was thinking about creating this post I realized that I have been very depressed. The change in the season coupled with having a tough time with my Psoriatic Arthritis symptoms has exacerbated this condition. Seeing my poor MIL deteriorating helplessly and the splintering of my in-laws has not been conducive to making this a pleasant time.

But, the holiday season is upon us and I am the original “Christmas cheese”.  I am not as obnoxious as some, but I do love the season for it lights and decorations and the whole deal. The past years have been marred with forced in-law functions that ceased to be fun many years ago. When I first met my husband, his large Italian family would get together for these big fancy dinners and party. Once my MIL became so ill and nasty, we would all pile into their tiny apartment at the senior living facility. It was miserable. One year, my husband and I spent Christmas Eve with my MIL in the rehab center she was in after she fell for the first time. No one else came.

It is time for me to snap out of it. I want to enjoy this season for a change. This year, we do not have to attend any family functions. We are having a quiet Thanksgiving with just my hubby and my step-daughter. We seemed to have moved to a place on quite contentment now when we are together. We are talking about our holidays together this year with pleasant anticipation.

I am really thinking about my remaining years. It is actually a very stressful stage of life. When do you decide to stop working for retirement and old age? When do you live it? I know I do not want my retirement to be in a hospital in hospice. I think the answer will come but for now, I want to live in celebration of life. I want to hold on to some good times and create pleasant memories because those will be the things that will sustain me in my old age.

 

aspry

My father in law (FIL) passed away this past week. It was a sad crossing for my family. He was the glue that kept very different groups of people together.

He was a WWII veteran and at the end of the war, he met and fell in love with my mother in law. They were married 69 years. She has Alzheimer and does not know what happened. He had been her sole caregiver for the past seven years since she began her decline. The descent into her private world was most apparent the last few years. She was not the nice type, but would berate him unmercifully. It took him going in to the hospital with kidney failure for the family to rally and do what needed to be done. They put Mom in a wonderful memory care place that practices the Eden Alternative http://www.edenalt.org/ which takes patient focused care for dementia to a new level.

Nothing brings out the skeletons in a family like a crisis does. His sister is a piece of work. Although each of them is as different as can be, they usually get along. But this brought out the nastiness and hurt from the past. I have not cared for her much, but tolerated her princess ways for my husband. But this last month made me decide that if I never have to deal with her again, it would be ok. When my FIL’s death was imminent and he was struggling with the fluids in his lungs, she ripped into my husband in the hallway. She did not understand hospice and accused her brothers of killing HER father.

My FIL was a frugal man. He was raised by Italian immigrants during the depression. He saved a lot of money and put it aside for his children. His mistake was he told them. His sister is the only one of the three of them who is not self-sufficient financially. I do not know her income, but as a bartender, I am sure there is not much in the way of a pension or retirement. Her father bailed her out all the time. She also had control of the finances for the estate. At one point, before my FIL got really sick, she wanted to move them to a smaller cheaper (crappy) apartment to save money. They would have to figure out how they would get meals as this place did not provide them. They were 94 and 90. It was always about the money for her.

Fortunately, my brother in law superseded her and took custody of my FIL. He moved him up to his house. My MIL was secure at her new place and life looked really good. However, life is unfair. My MIL fell and broke her pelvis. My FIL rallied for a week and then went steadily downhill. We think the release of having to take care of his wife allowed him to let go from everything. He passed peacefully surrounded by his family including out of state grandchildren who flew in. My MIL is recuperating and has been saying now for some time she is all alone. No one actually told her anything, but she is in such a state that she would not know who we were talking about.

We have always been an afterthought with his siblings. My husband harbors some unresolved angst about being always treated like crap by them. I have heard stories and they really did from early on treat him like garbage. He paid for the sins of his older brother who was a real hell-raiser. His sister was the princess and her parents doted on her. Joe was the forgotten child. He has never been able to get past all the hurt. He demonstrated this by not calling his parents or participating much in their lives. For 35 years, they lived in Florida and he was not able to visit or invited along when others were. When they moved back he did not reach out. When there was a crisis, as there had been many these past few years, his siblings expected him to come to their aide which he did reluctantly. The last time my FIL was in the hospital, my husband stayed with his mother for many days of pure hell. She needed 24 hour surveillance. She would nonstop repeat the same thing over and over and over… His sister refused to stay with her because she “could not handle it.”

The memorial service was in the city where my BIL lives there with his family. His father and the rest of the family live in another nearby city for all their lives. We were not told anything other than to show up. This was the final hurt for my husband. His brother’s friends were invited but we were told it was family only. The day before the service, we went to the funeral home for a viewing. It was all the same people who were in the room when he died. My poor FIL was laid out on a table with only a blanket covering him. It was awful. I have no idea what that was about but afterwards, my BIL and SIL and their children spent the day doing activities and had a big party. My poor husband and his family were not invited at all. We found out about it all the next day. To the bitter end, they had treated him like crap.

I personally like my BIL and his wife and his children. I get along with them all. I will miss not seeing them, but support my husband in distancing ourselves. It is sad to think that this is what happens. His parents spent 69 years together and then were separated before death. I am sure my MIL will not be around for too much longer. Everyone thought she would go first. We visited her yesterday and she would recognize us and then would not. According to her we have a nice home in Monaco. I wish! I think my SIL would prefer that her demise would hasten as she has hardly spent any time with her this summer.

My parents died at an early age. Although my father was 71, he was in and out of the hospital for many years after my mom died at 57. I was the “keeper” for both. Their deaths totally cracked an already splintered family. I am still very close to my oldest brother, but distanced myself from the other two brothers and sister. It was necessary for me to do this as they are really a bunch. It actually gave me peace. I think this is what will happen for my husband. I think not having to have them in his face will make things easier and maybe he can let go of some of his pain. He loved his father dearly and is dealing with his remorse, but it will fade.

His father had a wonderful long life. He would have been 95 in a month. My favorite comment by a man of few words was at a huge family event for a graduation. The back yard was filled with people and kids running around, playing games, sitting at tables in a tent and chaos ruled. We were sitting across from them. He looked around at the mass of people and said, “I caused this.” His eyes were filled with joy and love.

 

 

I am a sinner!!!

pink clouds 8-15

“I am a sinner. I have done something so egregious in my life that I deserve completely the issue at hand.”

This is how someone who has PTSD brought on by childhood trauma thinks. This is how a woman copes with the reality of living within an abusive relationship of a spouse or family member. This is what the perpetrator tells them and when it is someone you are supposed to trust, you take it as gospel.

The lesson is learned early when in innocence, the child or woman stands up to the inflictions and is beaten worse or punished even more cruelly. There is guilt placed on them that they are so flawed that their judgement is totally wrong. When you add isolation, which often happens, the person is so humiliated because they are led to believe they have caused their own situation and it is their entire fault. So they submit which is why so many people end up either dead or remain in the relationship.

Children often have no escape. They hear nothing but ridicule and criticism. They are abused mentally, physically and sexually by members of their closet trust unit, their family. This circle of constant wearing down of any self-worth is worn like a cloak and the energy given off to others in the world is a reflection of this lack of confidence. People treat people as the person treats themselves. And this only perpetuates their loss of confidence. When all hopes of a bright future are dashed at the malicious behavior of others, the person mentally gives up.

What happens in the body is another story. The body is designed to protect us. I have written a lot about the reaction of trauma and there is a ton of information on the physical deterioration of the human life form from trauma whether it is a one-time happening or many. There is evidence based research on the impact of trauma and the propensity of chronic illness later on in life. Please read the Ace Study information here: http://www.acestudy.org/

Now repeat this treatment for fifty years and then ask, who could possibly have a different outcome of low esteem and self-deprivation? How could the body after all those years of cortisol floods and other hormones and muscles in a permanent clinch all the time not affect the health of someone? This is my story. It is not about sympathy and it is very difficult, more difficult to talk and write about than anything I have ever done because you see….I am a sinner. I still in my subconscious think I deserved everything that ever happened to me. And so the manifestation of chronic illnesses is only another reinforcer.

The reason I am writing about this stems from another blog of the dear Dr. Victo Doloro: https://doctorly.wordpress.com/2015/08/27/eroding/ . It is about how obese patients are treated by the medical community. I wrote a long reply to that but it made me come to grips with something currently in my own life.

A week or so ago, I started to feel like absolute crap. We were headed out for vacation; I was able to quell the uneasiness of my ickiness with the anxiety of the trip. I always am anxious to some extreme, but going away is very difficult. I lose what little safety I think I have. Once away, I still was anxious and I thought it was about work. It is what I do. I find a reason for something so I can deal with the guilt of not being perfect. Although we had a splendid time, I knew something was wrong Big Time. We got back and the symptoms did not get better. If anything, I felt worse. I had my nurse educator take my blood pressure and sure enough it was up there, more so than it has been for a long while. I decided to look at my glucose, and yup, it was up. I took readings for four days and it was constantly up there.

I did a very difficult thing. I called my doctor and made an appointment and I asked him to order all sorts of blood work. On Friday, the lab tests came back and there was nothing significant in the findings. I was within a range I had been in before. This summer had been a whirlwind of barbeques and going out every weekend and enjoying ice cream cones while sitting by the canal. And I just came back from vacation where we treated ourselves to what-ever we wanted including shell fish. I had brought all my numbers down when I was on Weight Watchers and because of the change in eating habits, I actually as mindful on the trip and not a crazy fool. I only gained four pounds back from which meant I was still 20 pounds lighter than where I was less than a year ago. Just knowing that made me feel better.

This morning, the last test came back (urine) and it was off the chart. From what I can tell, my kidney crashed again. I had taken a shot (Simponi for my Psoriatic Arthritis) the Wednesday before we left. I had a reaction at the injection site I have never had before (I have had seven shots of this product) I noticed the next day that I felt like my blood pressure was up and I was very stressed. As I said, the anxiety of the trip and so forth. On the trip, I was not drinking water as much as I normally do because of how much I have to pee every five minutes and you can’t do that when you are traveling. I also consumed restaurant food which has a ton more salt than I use. But according to what I have read, I should have edema, and I don’t. There is also the possibility that the test was contaminated and the outrageous reading is inaccurate.

But here is the point of this long epistle. It took me four days to call the doctor. Why? Because in my mind I am totally blaming myself for whatever is happening. I am in a state of being triggered from guilt and the fear of oncoming punishment. For me, having to go to the hospital for more tests makes everything in my body tighten to the point of almost being crippled. I am sure it is adding to the heighten BP. Worse is the treatment I know I will receive. My GP is not like that. But this will surely mean a trip to a nephrologist and/or endocrinologist. My last experience was beyond awful and I wrote about it in Victo’ s post and I have written before about it. Even the nephrologist I saw never talked to me about kidney disease, but only about he bet me I would be so much healthier if I lost 25 pounds. HELLO??? I did and this happened anyways.

I feel in the depth of my soul like I have been captured like a caged animal and I am trapped. Now I will be paraded like a circus animal where people can poke fun and ridicule me. They will tell me that this is all my fault because I am fat and from the front desk to the person who will have to weight me, they will treat me terrible. It is an awful feeling. But I know I have to do something. My fear at one point was so strong that I almost said “screw it. I have to die of something.” Then my new found bravery came into play and I am facing this head on. First asshole who says something that this is my fault because I am fat is going to get an earful from me. I wish I could come up with a card to hand out starting with, “ you are an uniformed asshole! IF you only knew…..” The other thing that this and the conversations on Victo’s blog did was reinforced my desire to continue to work in trauma informed studies. I completed a certification last year in working with organizations to be more trauma informed. There is another longer certification in becoming a trauma informed specialist and I am going to go for that this year.

I know that the fear of seeking medical help is extremely common. The level of anxiety brought on from illness for people with PTSD from any form of trauma is unmeasurable. It is a major cause of suicide. It is only in recent years that PTSD is acceptable for people in the military. It was not uncommon and is still prevalent for soldiers returning to suffer major uncorrectable illnesses because of PTSD. They try to treat the illness and not the whole situation. There is still a stigma of being a weakling. People with childhood trauma and domestic violence victims are very much not understood or even accepted. Countless doctors do not do a trauma screen to see the route of diseases started back when they were physically abused when they were five. And until we stop  degrading and humiliating the victims, they are not going to speak up.

I am going to add to this, although I know this is going to be another post at another time. There is a lot of work out there dealing with people with PTSD and downregulating the body reaction to it. There is ton of stuff on mindfulness and meditation and sensory and energy work and other therapies. I have spent a ton of money and years on trying to find a solution. Although it has helped, some more than others, I am convinced that this is not the cure. I believe there is some so deeply engrained in the body that no one has actually discovered and is able to truly turn off. They can dim it, but not eradicate it. And, like anything, it is hard to say that this too is a failure. But this is all for another time.

 

 

 

 

 

 

 

 

 

Getting old is not for sissies.

Azalea 2

The statement of getting old is not for sissies was never more apparent to my in-laws as it was this week. Also true as demonstrated by this past week is that no matter the age, children prefer to remain in that role no matter how old the parent becomes.

Two weeks ago, my father in law (FIL) became quite sick and was hospitalized. His wife, my MIL, has dementia. None of this is a new situation. He has a bad heart and kidneys and is 95 and she has been progressively getting worse.

My MIL should have been put into a facility to help care for her years ago. If nothing else, daycare would have benefitted everyone. What I mean by this is that she would have received the medical help and personal maintenance that my FIL could no longer support her with. She did not have a shower in almost three weeks. She smelled, the apartment smelled and her clothes were stinky as she did not want to change her outfit either. For my MIL, it was a sense of control in a world where nothing else made much sense. My FIL was too overwhelmed and too guilty to do anything. A few years back, my BIL had set up something and my SIL squashed it as it was too much money.

They were extremely active up until the last decade. My FIL still wanted to be, but having to take my MIL anywhere was a nightmare. They sat and watched TV. Their inactivity was the worst thing for either of them, and my FIL had a pressure ulcer from sitting. The lack of stimulation and movement exacerbated my MIL’s condition.

On Friday, my MIL was admitted to a memory care unit. My BIL and SIL had a very difficult time of leaving her there, but I think for two different reasons. My BIL was heartbroken that his parents were going to end up separated and that she was in a “home.” My SIL was upset about the money which is substantial. My husband was relieved and thrilled because he understood the ramifications and possibilities.

She is in a program called Eden Alternative http://www.edenalt.org/. The facility is a circle of houses or cottages. Each one supports about ten residents and they all become a family of sorts. In the center of the facility is a large open outdoor area where residents can garden, play outdoor games, eat and just chat. There are other recreational facilities also. The residents are free to do whatever they want and are also guided to activities that are appropriate. There is also a beauty salon on site. They are free to go and do, except out of the facility, which is good as my MIL wandered every night. As I write this, it sounds like jail. But where they lived before was actually hell.

Dr. Al Power, who is one of the founding members of this program, once spoke at my work. He is amazing. He brought a gentleman with him who if you did not know him personally, you would not think anything about him. But he has dementia. One of the guiding principles of Eden Alternative is that all people change. The gentleman spoke about how he had this young man visit him every Sunday and brought a photo book with him. He showed him pictures of people and would nod and say yes about the stories he was told of each person in the photos. The visitor was his son and they were photos of his family. When asked if he really know who they were he said no. But, he said, it made the young man visiting him so happy he went along with it.

My MIL had changed so drastically and no one in the family got it. I did, and met her where she was. She was always happy to see me and “talk.” I have little history with her. Her kids could not accept that the mother they knew was not here anymore and everyone would get frustrated. She would talk about her children and how they were never there or lived somewhere else and they would be sitting right there. She never asked about her husband when he went into the hospital. She is in a different world and they wanted her back.

Yesterday my husband got a text and photo from the lady who is in charge at Cottage Grove. It was his mother. She looks ten years younger. Her hair had been washed and styled. When she was younger, she went to the hair dresser every week. She was in a colorful top she has not worn in a long time. He face was bright and she was smiling from ear to ear. The note said she was doing extremely well, sleeping through the night and participating in activities.

Once my FIL is up and better, he will be moving in with my BIL in their house. It was the original plan many years ago except that MIL was going to be in a facility five minutes from him and they could be together as much as possible. That is no longer feasible and we have my cheap ass SIL to thank for that. On top of her incredibly hording of the money left in her charge as Power of Attorney, she refused to stay with her mother in the last weeks. That responsibility was left to the boys, who could not help with personal things. She stated she could not stand to be around her. I find that so unacceptable but the boys put up with it. I am sure she saw a mirror every time she saw her mother. I think she also resented that her care was going to eat up her future hopes of a retirement plan in the way of an inheritance. Because of her delaying the process years ago, the cost of care for MIL is much more costly and the ability for my FIL to spend his last months with his wife is going to be difficult. Hopefully, my BIL will wrangle the advanced directives out of her hands.

I am thrilled for my MIL who has a future different than others had wanted for her, but has the possibilities of a good outcome. My FIL will be taken care of in his last year of his life surrounded by my BIL’s family, his grandchildren and great grandchildren. He is only an hour away from us and we will come up as invited. MY BIL owns his own business, is semi-retired and his wife adores him. He will be well taken care of.

 

 

 

Death of a parent

IMG_1871

Nothing prepares children for the loss of the parents. But it is the way of life to succeed your parents. Somewhere I read that having children was the whole thing about being alive; the sole purpose of your existence. That’s upsetting for someone who is childless. But I do not agree with that statement anyways. There are many reasons for existence which are as individual as the being.

My FIL (father –in-law) is in the beginning stages of dying. I have learned a lot about hospice and there are stages of the dying process. He is near 95 and has had a good and honorable life. He has declined any intervention that would prolong the process. My in-laws are in denial of the situation. I think my husband is the only one who has accepted the inevitable. Hence, there is terrible friction and drama going on with the family.

The issue that makes it worse is my poor MIL (mother-in-law) has Alzheimer’s and it has also progressed. I have been saying we needed to place her in a good memory care unit for years. But I am only an in-law and have been ignored. Now, in crisis, they are scrambling. Someone has to stay with her 24 hours a day. It is a sentence of hell. She can be abusive. She smells and the apartment is hot and also smells. My in-laws have been on their own for too long and the care my MIL has needed has not been provided.

All this tension has brought family issues right up to the surface. My husband is feeling all the neglect he felt as a child. He is being ostracized by his siblings in the process of decision making because he has not been very involved by his choice in the past. This too is hurtful. My BIL is a know-it-all and can be very demanding to the point I have to walk away. My SIL is a princess who has not come to terms with reality. She also has refused to stay overnight with her own mother which is leaving this responsibility on her brothers and their wives. I have stayed twice but I now refuse because she will not stay. They also have no respect for my husband or me.

They found a place for my MIL and they are now in panic mode to get her placed. No one has insisted that my MIL see a doctor in the past couple of years and of course she has put up such a fuss and refused to go. MY FIL gave up fighting her. Now someone has to take her for a physical on Monday. It is not going to be easy but I am so glad because I think they will see there are other issues present. She was diagnosed with breast cancer seven years ago and had a double mastectomy. Her progressive weight loss and decline I think indicates more is going on. But if they had worked with her and got her the medical help and interventions earlier, she may have had a better quality of life in the last year.

My FIL is in kidney failure. I found out yesterday that he had an MI (mild heart attack) a short while ago and it went undiagnosed. Now he has congestive heart failure. He is unable to process the fluid retention he is having. They will make him comfortable but no one has said what needs to be said and that is Hospice Care. They think that is a death sentence and not what it really is, which is the best care he could have right now.

They explained they will discharge him off the floor and are sending him to a “rehab” unit. This is the same place my MIL went to when she broke her hip. The unit is actually a transitional unit and he will probably be admitted to palliative care. MY SIL thinks they are going to get him up and walking around. She said she is going to look for a smaller apartment for him when he comes out in two weeks so he won’t have to worry. She is not dealing with the inevitable and unfortunately she has the power of attorney and health proxy. My BIL was appalled that FIL signed a DNR. I hope they adhere to his wishes which are basically, “take care of your mother and let me go. I am tired.”

I went through absolute hell with my own parents. My Mom died when I was 23 and I was responsible for my father for the next 13 years. My siblings abdicated any responsibility for either except my oldest brother who did all the funeral arrangements and was supportive. It splintered the family and firmed up my resolve to not have anything to do with most of them. A couple of times that they have interjected themselves in my recent life caused only more hardship for my oldest brother and me.

Death is not pleasant for those who remain. That is who the entire funeral and other hoopla is for. The transition of dying is not necessarily horrid. It actually can be beautiful and loving. We all will face it in some factor or another. My husband and I have completed our advanced directives and wills. There is some peace in knowing that it is in place and we have a non-family (lawyer) who will oversee the process and guide my nephew and/or his daughter to do as we wished. I wish comfort for my in laws and I hope someone will supersede my BIL’s and SIL’s lack of reality and ignorance and get them the care they both need.

 

Birthday wishes for me

roses

On turning 61

I am not sure how and when, but tomorrow I turn 61. My last birthday at 60 was terrible. I am more used to the number but still overwhelmed with the swift passing of time. As the years accumulate, the time seems to expedite like traveling down a slope, picking up speed as I tumble and slide. There are no brakes.  I can see how the feeling of hopelessness can accompany someone as they age but that is not how I am feeling. Ok, well not all the time.

My dearest friend and I spent Friday night sitting in the garden and talking about our lives. We asked each other what we would do if we could do anything in our golden years of retirement. Her dream is to get into an RV and drive the country taken pictures and blogging about them. What a wonderful idea. My brain immediately went to all the reasons why I would not be able to do that. Fear is the biggest road block to happiness.

I have no clue what I would do. I could only see myself as I am now, working where I am and in my current home. That is not the real desire, but I could not put myself to the future and relinquish the controlled life I have now.  It spoke volumes about the level of stress I am in right now.

I am a believer of the power of vision. We all have the ability to close our eyes and “see” things, but you have to be ready and you have to really concentrate. The concept of the third eye and dream visions and so forth are real and has been around forever. I am not gifted like some with the power of vision, but I have an amazing empathic sense of the current situation. This is not to say I haven’t ever had visions or knowledge of something without tangible proof.

I find the lack of a plan for the future unsettling. I like to have a direction or path with a destination of some sort even if it is only a stopping point to the next place. Some say it is the journey not the destination that counts. Not having a plan is making me feel a bit lost and hitting this marker of my birthday had caused this concern to resurface.

I know every day is a blessing for me at this point. I watched my parents and many friends and family depart this plane of existence too early. I have always said I want to leave this world a better place because of my influence. I thought it would be through my own children, and that was not to be. I thought teaching was my contribution, but my level of influence in that area is negligible.

There is something  deep within me that says there is something I am supposed to do that will make a bigger difference in the world. I really only became aware of this in the past few years. It is like a simmering pot that has been turned up. We all have a calling, but many people do not hear it. For me, it burns within and shouts in my head. But it is unclear as to what it is supposed to be. It is very frustrating and being so adds to the noise and muddles the resolution. Meanwhile, time keeps ticking away.

I spent a lot of time studying many spiritual things. I read about neuroscience and the workings of the brain. I have done energy work and spent a small fortune on taking classes in Healing Touch and Reiki and Mindfulness. I have read volumes from the nonsense of Doreen Virtue, the science of many doctors like Peter Levin, and Robert Scaer to the prophecies of Eckhart Tolle, Brene Brown, Eric Pepin and Don Ruiz. I have over sixty or so spiritual books in my Kindle alone. My newest author is Stuart Wilde and I am devouring his books like candy.  I have studied Christian, Buddhist, Zen and Pagan methodologies and teachings. I lean more to a Pantheist viewpoint with rituals and the Craft.   I have taken classes in trauma treatment and may work on another certification in the fall.  It all is leading somewhere.

On this eve of this birthday, I am sending birthday wishes for a few things. I need a guide. I have known this for a while and have been asking every night for a guide. I had a dream about a friend of mine at work who is the Spiritual Chaplin for hospice. The next day, he stopped by at my desk. Was that the opportunity and I blew it? We talked about Weight Watchers as he was part of the group who was taking it at work. Not all is lost, but I am not sure about his connection. But that’s the point.

Am I supposed to take this next certification? It will cost me but the result will be a certification as a Trauma Specialist. I can work as a consultant for providers and schools. Do I  make this investment of time and money at this point? Not sure… So I wish for clarity of my path.

And my other wish is the health and strength to be physically able to do whatever is next. Some say if it is to be, I will be strong enough. I was lucky that there were other drugs to take when the Enbrel stopped working. The Simponi I am on is finally working. My 25 year old step daughter cannot keep up with me when we go shopping or work around the house. Granted, she is in terrible shape for a 25 year old. But I seem to have regrouped some of my energy and strength. I am so much better than I was a year ago at this time. Although I have stopped being extreme on my diet, I am still holding off the weight I lost. This month is not one for diets. We start celebrating the first week of June, and it goes right on until Father’s day when we celebrate that. You can never have enough birthday cake. We also are heading for The River for a while and I am going to enjoy myself. (I have a whole post brewing about being on a diet and how people can be so invasive of your life.)

I am hoping my time at The River will help me focus and find my footing again.  I am off to sit in my garden, give thanks for all I have received in my life, and acknowledge my gratitude to the Goddess for all she has given me and the world.  I am so blessed in so many ways. And I will again ask for guidance and direction.

So mote it be.

 

 

Changes and growth

Azalea 2

Ten years ago, mu husband’s only daughter decided living with us was too much. We did not have a penny to spare, we expected her to do chores, and sitting in her room sulking was only on a limited basis, permissible because she was 15 and it is just part of that age. She decided to move out and permanently live with her mother in California. It was the best thing possible on so many layers. We were finishing our Master’s and working multiple jobs. We did not have the time and patience for her shenanigans. And her mother kept trying to interject and it all added to the mess.

azalea and bug  After she moved across the country, we were all on friendly terms and E seemed happy. Less than two years later, her step-father, who was the nicest guy in the world, passed away from a brain tumor. It was the first in a series of things that confirmed that although we may not know it, there is a reason for everything. E’s move was necessary so she could be there to help her mother. The two of them spent the next years traveling and really bonding for the first time in their relationship. Her mother would not have ever won the Mother of the Year award, and when E’s parents divorced, her dad had sole custody. Her visits with her mom were short stints from the age of 7.

rhoda 1 2015 We knew that her mother did not take the best care of herself and there were repeated emergency phone calls when her mother was in the hospital. As time passed, E and her dad grew apart. My husband was angry about the whole thing, but would not inquire as to why she did not call or even acknowledge him. We believe that there were some “tales” told to E about her father as a retribution for the past.

Last fall, we got a weepy phone call out of the blue from her that her mother again was in the hospital. She did not come forth with the details until a few more phone calls. Her mother was dying and on a ventilator. She passed on when E ordered the vent turned off. As the next weeks of turmoil ensued, her mother’s family stepped in and all was decided that E would move back to this state but live with them. There was no consultation with her dad, even though we told her she could come back here to our house. I spent a lot of time helping her get organized for her move over the phone and email. Still, there was no desire on her part to come back home, here.

Without going into detail, the journey gets muddy as there was a lot of money involved. She moved back but pays whopping amount of  rent to live in a hovel of a house where she has one room. She helps supplement the family’s bills and I think there was hope she would continue indefinitely. At Easter, her dad drove down to get her and had her come up for the weekend. It was dicey at first but then the anger melted. We all enjoyed her time with us. She returned again for another visit and she sat and cried at our kitchen table, letting all the pain and anger at her mother out. She apologized to her dad and we just let the bad stuff all go.

rhoda 3

She asked if we could help her move back here and find a place of her own. She could well afford to and we of course thought it would be best at her age to have her own place too. She returned for another weekend two weeks ago and we found a cute little condo and she bought it. As we celebrated her growth, she opened up and told us a lot of what had transpired and how messed up things were from her mother’s situation. The trust left to her was tied up in legalities and her mother had not paid a bill in two years. E thought this was  a recent thing, but actually was the way her mother had always been. We took her to our lawyer and now she has a team of people supporting her. We are very proud of her.

The best thing is we are a family again. The anger and pain in my husband seems to have left and he is thrilled to have his “baby” close again. She and I have re-established our “maternal” friendship like nothing happened. We had gotten very close when she lived here before and that was part of the issue with her mother interjecting herself. She was jealous.

It is not all going to be peaches and cream. She has a lot of issues to fix. She has not worked and will need a job. She has the potential to have a healthy income from the trust, but it will be tied up for a while longer. Her mother was afraid to drive and never did and passed that on to E. She will need to learn to drive. She will need to finish her college pursuits, but there are a lot of opportunities locally for what she thinks she wants to do.

The best part is watching her blossom and grow. I am looking forward to seeing her fulfill her destiny. I love it when the three of us are doing things, whether it is all of making dinner or just sitting in the garden chatting. There is a sentiment that says helping others helps yourself, and I truly feel like that is true. Times have been tough in my life with work and I have been doubting I am making any impact in this world. Helping this young lady has been very beneficial for me.

rainbow 5-2015 View from my garden chair just this week.

 

 

The unforeseen

Louie 1

This week was a week of death. Not in the sense of someone’s untimely departure, but in the future. This week I was made aware of the forthcoming dismissal of some employees. The other joyous adventure was that my husband and I started the process of doing our wills.

About a week ago, I wrote about a consulting agency that was ordered by the Mothership to come in and substantiate a prior report. We were not actually aware there was a prior report, but it became apparent when in interviews they asked questions around things that could only have been known if someone had given them a heads up. We now know for sure they will be reporting back a restructure process. For the last five months, our agency has been looking seriously at cutting costs and part of it will be the elimination of positions. Some have already happened. I was told of others. I wish I did not know, actually.

The staff who will be leaving us shortly have no idea. I think that is what bothers me. I just had my monthly meeting with one. They say you don’t get fired by a company, but you fire yourself. She has done herself in with being miserable and horrible to work with. I have been meeting with her and her current boss to help smooth some edges.  I thought they were going to redeem her, but there have been too many complaints. She is so oblivious to it all. She told me she is planning on going back to school on the company tuition assistance. Ah…no.  It bothers me that she will be let go, but at the same time, it will make for a better situation for my staff who have suffered with her nastiness. I am just grateful she does not report to me, as that had been talked about too but decided against at the time. Now I know why.

This week, I had to also look at my own demise and plan for what will happen to my Estate. It is funny to think of having an estate, but I do. I have all of my family’s heirlooms including some jewelry, I own property, and I have money. Nothing extremely extravagant.  But it is my life and I want it to count for something. So my husband and I had to make some decisions. This is where family can be a burden or blessing.

We decided to do what my very well off brother is doing. We are giving only half to three family members, my two nephews and a tiny bit to his daughter. The rest will be given to a charity we both love. “Save the River.” It was a group founded by Abbey Hoffman, who resided on the river and worked to keep the area protected.  My goal is to get rid of all the STUFF in the house prior to my death so it is not a big deal but I will have fulfilled my promises to the family who gave the stuff to me.

I will be honest that this week has not been a pleasant experience. It makes you face how fragile your world really is. Things change in a moment. I am not spontaneous and so there is some peace in getting things in order. We have such a tenuous hold actually. We need to cherish every moment.