Holiday Guilt is Setting in

My mother does not want to come for Thanksgiving. She does not want to use the transportation service to travel to town for the holiday.

My mother lives about 35 miles from me and a service is required to get her wheelchair in the vehicle. I don't have a vehicle that accommodates a wheelchair while someone is sitting in it and she is so frail I am afraid to move her from her wheelchair to the car and back again.

I'm happy to go and visit her on the holiday that isn't the problem. The problem is the guilt I expect to feel then as well as the guilt I am feeling now. I'm not sure why I feel guilty, it is her decision except I know my mother and when she says something like this what she is saying is find another way to get me into town.

My mother doesn't do much for herself. As I have mentioned here she refuses to feed herself now. She can, she just prefers having someone do it for her. She also insists on using a bedpan, again because it is just more convenient for her.

There is a part of me that is willing to let the shit falls where it may and go along with what she is saying even though I know she really wants to come for Thanksgiving. Not that she will have a good time, usually it is a disaster because she doesn't get as much attention as she would like and because I don't allow her to drink anymore.

The holidays are always stressful because of this situation and I wonder how other people handle it. I would really like to celebrate the holiday with me and my kids for once without worrying about my mother, putting up with her histrionics and having to try to explain it to my children.

Any suggestions?

I got an invitation to Kickstarter

A couple of months ago I read an article about a website called Kickstarter. Kickstarter is a funding platform for artists, designers, filmmakers, musicians, journalists and just about any other creative entity.

Basically it's a way for starving artists to beg for money to produce their projects.

Something I am familiar with, though I have not been successful.

In order to have a project on Kickstarter you need an invitation. You can't just log into the site and ask for one you have to get one from someone who has a project on the site.

I started asking around, twittering about it and basically begging for anyone to give me one if they had one. I'm ready to edit my book and start publishing it. I've found this is a rather costly thing to do if you don't know any thing about editing or marketing.

After I posted about being broke and what an ass my ex husband is I got a lot of suggestions for how to make money online, as well as some great ideas for how to piss him off. I was also given an invitation to Kickstarter.

I have just launched my project today. You can see it here.

I'm not a filmmaker but the people at Kickstarter tell me that it really is a necessity so I took my phone and created a really crappy video. And no, Stanley is not licking his balls, he is licking his foot.

Anyway, now that I have a project on Kickstarter I have some invitations and I want to give them away to you guys. If you have a project that needs funding or you know someone who does please let me know. I was extremely fortunate to receive an invite and I would like to give one to someone who needs help.

Feel free to pledge to my project as well. You can pledge as little as $1 and every bit helps. It is an all or nothing deal so if I don't meet my goal I get nothing. Help me spread the word about my project, the more people who see it the more people who will pledge which means I will be able to achieve this dream of mine of becoming a published author.

House Cleaning Blog Style

Less than 48 hours to go! Is anyone else as excited as I am to have the new school year start?

I will soon be able to blog on a much more regular basis. In anticipation of that I wanted to post a few reminders.

If you aren't already following me on Twitter please do. I follow back everyone who follows me. You can also follow me on Facebook too. I think it's the right link. I was just going to type that I don't understand how people can spend so much time on Facebook but when I went to get the URL I lost 20 minutes. Hmmm....

This here blog is now available on Kindle. Of course if you found me here I don't know why you would want me on the Kindle too but then I don't have one so I have no idea how the whole thing works. If you have a Kindle and you subscribe to blogs please leave a note in the comment section and let me know how you like it. I'd love to get one but I don't commute on a bus or train, I don't actually commute at all, I can open a book easier than a Kindle as well. The price tag alone keeps me from purchasing one but they do look cool. I'd love to be able to download a book in the middle of the night.

That's about it for now. Starting Tuesday you can look for more regular posts on this blog as well as the others.

Caregivers

There is a woman I see everyday when I walk my daughter up to meet her walking line/crossing guards for school. She has five children the oldest of which has downs. This woman and I have said hello to each other but rarely have time to chat since she is usually chasing her eldest daughter around while they wait for her bus.

I often wonder to myself why this woman had more children after the first one. I don't know how she does it. I don't know where she finds the energy to look after five children and one with special needs. And she does a wonderful job. Her kids are all dressed nicely, they are clean, hair brushed, polite kids. My daughter, without fail, always has a stain on her clothes and short of shellacking her hair it's always a mess.

Don't get me wrong I am not suggesting that this woman shouldn't have had more children, I just don't know, and I am in awe, how she manages.

Mother's day is this Sunday and I suspect this woman has no idea it is coming except for doing something for her own mother. She probably has that all under control.

It takes a certain kind of person to be a caregiver. Not everyone is able to handle it. Not everyone should do it. But for those who do it is a thankless job, often with few benefits at least to the outsider.

While caring for my mother I was often run down, tired, angry, overwhelmed and broke. I don't regret having done any of it for a moment. I wish I had done it better and with more grace but I did the best I could and I am proud of that.

Changes

I had a really nice visit with my mother on Easter. A very nice visit. In fact I kept thinking to myself "it looks like mom, sounds like mom, but this is not my mother". Not that our visits have been bad. For the last six months or so they have been much better than they were two years ago. She has calmed down. She is not angry anymore. She doesn't lash out and say hurtful things anymore. But the visits have been the same each time. We never really talked about anything but finding her a new place to live.

She still wants to move but I don't think that will ever change. I also know that as soon as she moves she will say she wants to move again so I don't put much stock in it anymore. The difference with this visit was that we actually talked about the past. We chatted about people we knew years ago, what characters they were and recalled funny stories from the past. It was a really nice and enjoyable visit.

We also cleared up some business that had been put on the back burner for the last few years. Mom is still legally her own person. She makes decisions that my brother and I can not make for her. She is not of sound mind to make most of her decisions but these few that were left over weren't worth changing unless she wanted them changed. Even though it was in her best interest to change them no one wanted to because the changes were not what she wanted.

When she told me to make the necessary changes, the way my brother and wished to make them, I was stunned. Pleased, but stunned. I don't know if the stars are aligned right now but I'm going to ride it out.

Mentally Ill in Nuring Homes

There is an article today on MSNBC.com about how the mentally ill are causing disturbances in nursing homes, sometimes leading to the death of elderly nursing him patients. Nursing homes have been supplamenting their occupancy with the mentally ill since the elderly are healthier than in decades past and not utilizing nursing homes until much later in life. The occupancy rate of nursing homes has been falling so they make up the shortfall by allowing the mentally ill to become residents. Often the mentally ill patients are much younger, and much stronger, than the elderly residents.

The article sums up why this practice is happening more and more frequently:

Under federal law, nursing homes are barred from admitting a mentally ill patient unless the state has determined that the person needs the high level of care a nursing home can provide. States are responsible for doing the screening. Also, federal law guarantees nursing home residents the right to be free from physical abuse.

Families have sued in hopes of forcing states to change their practices and pressuring nursing homes to prevent assaults. Advocates say many mentally ill people in nursing homes could live in apartments if they got help taking their medication and managing their lives.

The problem has its roots in the 1960s, when deplorable conditions, improved drug treatments and civil rights lawsuits led officials to close many state mental hospitals. As a result, some states have come to rely largely on nursing homes to care for mentally ill people of all ages.

I find it particulary intersting that there is a law that guarantees that residents have a right to be free from abuse, but that's discussion for another post and on another blog.

My mother is in a nursing home specifically for the mentally ill. She was in an assisted living facility prior to this home but she decided she did not like that place and got herself kicked out as she likes to tell anyone who will listen.

Like daycare, nursing homes are a necessary evil. You are putting a loved ones care in the hands of someone whom you only have known for a short time. And usually nothing bad will go wrong. However, both of these institutions have to take as many residents as possible to make a profit. The staff are paid poorly adding to the high turnover rate and questionable resume of the staff. Many of the staff in the assisted living facility were immigrants doing a job that no one else wanted to do for pay that few would find acceptable.

The ratio is often much higher than it should be for these kinds of facilities. When my daughter was in daycare the ratio of students to teacher was 8 to 1. It was lower for the littler kids and even lower still for the babies but still I can't imagine being in charge of 8 kids all by myself. I'm not sure what the legal ratio is for a nursing home but where my mother is it is about 11-1. It isn't profitable to have any more staff than the minimum.

I don't know the answer except that if you must use either of these kinds of facilities then you must keep in contact with the staff and administration. You must keep yourself informed. You should also listen to the patient's concern.

The Storage Unit

My brother and I are closing down my mother's storage unit in the next couple of weeks. This means we have to find a home for everything that is stuffed into the unit. A home can be one of our homes, the cabin or donating it somewhere.

We got the storage unit two years ago when mom got herself kicked out of the assisted living facility she was living at. Her apartment there was large, a bedroom, living room, kitchen and a den. The nursing home she is in now is much smaller and she couldn't bring much furniture so we have quite a lot of stuff to go through.

We should have just taken care of all of this back then but no one knew how mom was going to do at the new place. We also worried that if we dispersed or donated everything she would then decide to move to another apartment and would want her things. So we did nothing.

She hasn't said much about her things. At first she wanted to be in a place with her stuff but we had tried that and it didn't work. Having her things may have been comforting but it didn't prevent her from being abusive to the staff and disruptive to the other residents. The first six months was a challenge.

She is much happier where she is now. I think she has finally decided that she is comfortable there. I'm sure for many people the decision to move to one place or another is based on their affection for the place. It must be pleasing to them in some way. Whether it is the surroundings, the architecture or just a gut feeling it is different for each person. My mother has never liked any place that she has lived in. My mother is one of those people who likes familiarity. And it takes her a while to become familiar with a new place. Often years.

Since mom is now satisfied with her living arrangements we are going to go ahead and empty out the storage unit. Some of the items, such as her microwave, dishes and everyday stuff will be saved for grandchildren who are going off to college in the next couple of years. My brother and I will choose which pieces of family furniture we want to keep and which pieces we will bring up to the lake house. Whatever is left will be donated to Goodwill or Bridges.

Of course the minute we have moved everything mom will announce that she is moving and wants all of her things. This is just the way it goes.

Foolish Pride

It's been two years since I cared for my mother on a day to day basis. I still handle a lot of her affairs but I'm not the one who dresses her, bathes her or feeds her.

When I was changing my daughter's diapers I was also changing my mother's Depends. Taking care of an elderly parent with dementia is a lot like taking care of a child the only difference, and it is a huge difference, is that the child is going to learn how to eventually do the things such as toileting, feeding, bathing etc while the parent with dementia is going to become more dependent as time goes on.

That knowledge alone can be exhausting. The work itself was not so bad but knowing it was going to get worse was at times overwhelming. I don't know how people do it without help from others as well as taking considerable time for themselves and unfortunately many times those two things just don't happen.

Care for an aging parent often falls on the shoulder of one sibling rather than being shared equally between them all. This happens for a variety of reason, geography and gender play a large part in deciding who cares for mom or dad the most but often there is one sibling who is just more inclined to help while the others are less inclined to. The one who does do the brunt of the care often doesn't ask for help. Because she, and lets face it most of the time it is the daughter who does the majority of the care, doesn't ask for help the siblings assume she doesn't need help and rarely offer it.

While I was taking care of my mother I wanted help and I needed help but I didn't know how to ask for it. Since my brother was against my taking care of my mother (he believed she should have been in a care facility long before I took over the job, and he was probably right) I didn't ask for help because I knew he wouldn't help. I did ask that he help me with my children on occasion and if I recall correctly he took my daughter to get ice cream one afternoon to give me a break but by and large he was not much help. I'm not sure if this is common in families. I no longer ask my brother for any assistance since I know I can't count on him.

When my father was alive and caring for my mother I helped him and he certainly had help from the people he hired to care for my mother but I don't recall people ever knocking down the door or calling to offer assistance. My grandparents were more help to my father by taking care of my brother and me but didn't do much when it came to my mother. In their defense my mother was not a very good patient. She resented the fact that people had to help her yet she expected everyone to do everything for her. It was a no win situation and I don't begrudge anyone who chose not to give their precious time away helping her when she was so ungrateful for their help.

I don't know how families handle this situation. I have come across several sites written by women who have taken a parent into their own family and manage to make it work but I don't think they are likely to share all of the doubt and frustration that they have.

I know I didn't. There is a certain amount of foolish pride that comes with the care of an elderly parent. A test, so to speak, and I know I never wanted to show that I couldn't handle the job even though it was clear that I could not. There is a considerable amount of shame involved with asking for help and when you are in the thick of it it is hard to see how foolish that is.

Birthday Recap

Mom's birthday wasn't so bad. She didn't get all giddy about the balloons but she didn't say they were horrible or stupid either.

I arrived as she was having lunch. It was not my plan to arrive at lunch time but I got held up while I was picking up the balloons and her card. I hate getting there at lunch because I can't talk to her in private. I have to squish between my mom and another resident who never acknowledges my existence. I feel as if I am upsetting every one's routine and that I am not really welcome.

I brought the balloons into my mom's room and tied them onto her bed. Taking care of this little chore gave me a reason to get up from the table where everyone was drooling and dribbling on themselves. Mom doesn't bother to feed herself anymore, she lets the aids take care of that so she isn't usually covered in food like the other residents. They are all wearing large bibs that cover them completely but like children they still manage to spill.

That's what mom's place reminds me of, nothing more than a day care for adults. Since mom is in a place where the residents have some kind of mental challenge I suspect it is a lot more like a day care than a nursing home. If I get there when they are not eating there are usually four or five people playing on the Wii. Interestingly they like to make the Miis just like my daughter does. The games aren't nearly as much fun as making the avatars.

Before I left one of the aids (I really don't know what their title is and I don't want to use names so this is the title I'm using but I mean no disrespect by using it. The person who cares for my mom is a wonderful woman who has more patience and love than anyone I have ever met. We were very lucky to find this place and her.), told my mother that they were going to be taking pictures while she blew out her candle and that they were all going to sing Happy Birthday to her. Mom said absolutely not, as I knew she would. I suggested that she push the candle into the cake and she actually smiled.

As the words "push it into the cake" left my mouth I knew I might have made a big mistake. My father used to tell the story of Eugene Casper, a little boy whose party my father went to when he was a child. Eugene blew out his candles and then pushed all the candles into the cake. My father was horrified by this disregard for decorum and therefore told the story at every birthday party ever since. My brother and I would both groan when he told the story but both of us tell the story at our birthday parties now. When I suggested it I didn't think how my mother would respond to being reminded of my dad and his goofy stories.

As anyone caring for someone with memory loss or dementia is aware most of the time it's all a crap shoot. You never know what kind of reaction you are going to get for anything. I didn't think about the outcome, and usually I am three steps ahead but I was caught up in the moment. Luckily my mother laughed at the suggestion. It could have gone the other way completely.

I'm glad she had a good birthday.

Happy Birthday Mom

Tomorrow is my mother's birthday and I am going to fuck it up. I don't want to but I know I will. After spending weeks trying to figure out what to get her I have decided on balloons. I know it sounds lame but let me explain.

My mother is the hardest person to shop for. For as long as I can remember she has done little more than watch TV. She also used to read but because of her memory loss and her weakening eyesight she can't do much more than look at the headlines in the paper. I have bought her book after book, in large print so she can actually read it. She hates every book I have ever gotten for her. When I ask her what kind of book she would like she says the same thing time after time.

"Oh, just get me a novel"

Okay so she doesn't want a biography or a how-to on photography, I get that, but telling me she just wants a novel leaves a lot of room for messing up. There are a lot of novels out there.

For a long time I got what I thought she meant by historical novels....romance novels. The kind of literature I can't stand. Not that it matters if I like it but I have learned that she will not like the book no matter what I am left with it so it may as well be something I like right?

She no longer needs clothes because she wears housecoats that snap up the back for easy changes. This is probably for the best since my idea of what I think she might like is very different from what she actually likes. Even if I get the same outfit that she already has but in a different color (a color I know she likes by the way) she will poo-poo it. Back to the store to return and try again. I'm glad clothing isn't a viable option anymore.

I have gotten her a headset so she could listen to books on tape but those are too much work she says. Really? How hard is it to put a tape in and then press play and sit there for an hour or so?

I've gotten her plants but she complains that they just die. So I got her cut flowers in a vase which need too much attention since they need to have water in the vase to live. And they are a waste of money since they are already dead.

I've gotten her candy, which she likes but doesn't need. And she would eat candy all day rather than real food and like a child she gets a sugar high. She will get shaky and agitated and that isn't fair to the people who look after her.

Balloons seem like the right way to go. They will stay up for a couple of weeks, they will be colorful, they will not take up precious space on her dresser, they will need no water or any other fumbling. And best of all they can be thrown away when she tires of looking at them.

When Parents Act Like Children

Because I have cared for my mother for so long I often wonder if my perspective isn't a bit off. I have looked at my mother as a if she were a child for a long time. Granted she acts like one a lot of the time so it comes in handy. My mother would be happy to eat candy and chips all day long. She does not like any kind of vegetable.

I learned a long time ago how to disguise veggies in her meals. She hates mushrooms but she loves liver and adores liver pate. So I made "liver" pate for her out of mushrooms. I simply threw a bunch of mushrooms in the food processor, added some onion, salt, pine nuts and Worcestershire sauce and mixed it all up until it was a fine paste. This is one of her favorite recipes of mine and she asks me to make for most family gatherings. Everyone else knows that it is not liver and since most of the rest of the family don't like liver everyone is happy. It doesn't really taste like liver to me and since I hate liver I think it is pretty good.

Mom wouldn't brush her teeth if she weren't told to each morning and night. Now she has a hard time doing it but she used to be able to handle a tooth brush. She just didn't want to. This is not a memory issue because she had no problem spritzing herself with perfume. All over herself, creating a cloud that stayed with her until the evening. She used to be fastidious about her hair. I spent each morning after getting my hair ready doing hers. No matter what kind of cut she had her hair always had to curl under but she refused to allow me to set her hair at night with rollers.

I don't remember my mother ever braiding my hair or brushing it for that matter. My hair was still too short when she got sick so she never really had the opportunity. As my hair grew she just insisted that I keep it short even though I wanted it long. I never understood this since she wasn't the one who took care of my hair. In all fairness I didn't either but I might have if she had let grow it long.

What I am getting at is that as an adult I have not had to face her deterioration like most women my age. Some of her symptoms are worse than they were even ten years ago but by and large she is just as stubborn and petulant as she has ever been. I haven't questioned too many of the decisions I have made because I have been making them for so long.

I have tried to maintain her dignity by consulting with her on a lot of these things but some of them like diet and hygiene have little wiggle room. And because someone does have to care for her it is more important that she address these things. When she was heavier it was very difficult to transfer her. When she doesn't brush her teeth or bathe it is very difficult to be close to her.

Visiting Hours

I time my visits to my mother. This week is Valentine's Day and next week is her birthday. I am expected on her birthday which is reasonable but I am also expected to do something for Valentine's Day. This creates a problem since Valentine's Day also happens to be my daughter's birthday.

So I am visiting my mother this Friday and will send flowers or balloons to her on Valentine's Day. Probably balloons since they will last longer and are a bit more original than flowers.

When my grandparents decided they were getting up in age and needed someone to help them they opted to move into an assisted living community. Both sets did this as they did not want to be a burden to their children. This is a nice thought and generous of them to consider. The decision did not prevent guilt to passed along to their children when it came time to visit.

My father visited his mother almost every day. It drove my grandmother nuts because there is only so much you can say to someone each week and when one person doesn't get out much there isn't a whole lot to talk about. Often they would just sit there for five minutes and look at each other until my grandmother told my father to leave. Dad was fond of letting his runoff guilt land on my brother and me. Each day he would ask us if we visited grandma. There was no lying since he checked the register each day.

For this reason I am glad my father passed away before my mother did. When I visit my mother we talk about the same thing each visit, namely when I am going to find a better place for her to live. I'm not and I tell her this each time. We then spend the rest of the visit watching tv.

I have told my children that when I am in either a nursing home, assisted living community or even the hospital they do not have to come and visit me each day. Even once a week might be too much but I reserve to make that judgment when I get to the home. They have agreed.

It's Personal

The decision to move my mom to a nursing home was a tough one to make. While there were several people involved with the decision ultimately it came down to me. I could no longer take care of my mother. I'd like to say it was her decision but had that been the case she would have never chosen to move.

My relationship with my mother had always been difficult. I had been caring for her since I was a child and our roles had long ago been reversed. My father made it his mission to make it appear as if she needed little help. At least to my mother. She was unaware of the calls my father and I made to each other daily regarding our schedule. Dad only retired five years before he died and even after he did he kept himself very busy. We constantly checked in with each other to make sure that someone was always home with mom, that she was never really alone even if she believed she was. This was easy to accomplish because we lived in a duplex. Mom was often alone in her level of the duplex but I was upstairs if my father wasn't there. We had installed a baby monitor so that I could hear what was going on downstairs. Mom was made aware of the monitor when we installed it but she quickly forgot about it.

Because mom had been led to believe that she had been much more independent than she really was it was a shock to her that I wanted her to move to a place where others could better take care of her than I could.

In the last six months of us living together we were constantly at each other's throats. Most of this was due to my father's sudden death, we were both grieving and trying to settle the estate and just tidy up a lot of loose ends that neither one of us wanted to tie up. We both missed my father and since he had been the buffer between us for so many years we didn't know how to get along properly.

But a breaking point had been reached and there was no going back. I was exhausted, I wasn't taking care of myself and I was neglecting my children, I was simply too tired to see to their needs after taking care of my mom. I had to make a choice and my kids were simply more important. They had their life in front of them, mom had lived most of hers. It was a difficult decision to make but really there was no other choice.

Where has Jen been?

I don't post on this blog enough. Frankly it becomes a bit depressing sometimes and I just need to take a break from it. You can still catch me on my other blogs which aren't nearly as depressing as this one.

I have been meaning to add some links to my blogroll. Specifically Assisted Living Directory. It's a great resource so be sure to take a look.