This one's long, folks. My apologies.
So many emotions are going through my soul lately. In many ways, it's a very stressful time. In other ways, I've discovered a new emotion regarding my mom cropping up, and it is one I did not expect: relief.
I've mentioned that I feel guilty about leaving my mom, especially when her condition seems to be deteriorating, and especially when she has grown so dependent on me. I feel guilty that I am abandoning her when perhaps she might need me the most. I feel guilty for leaving my siblings to carry much of the load I've helped carry at a time when Mom's care is proving to be more challenging. I feel guilty that my leaving might make things harder on everyone (well, except for Jonah and me, of course). And I feel guilty that I feel relieved that my role in my mom's care will not be as great as it has been in the past.
But I'd be lying if I said I didn't feel relief that I won't be bearing the brunt of Mom's care for a while. It is stressful at times, and I am, admittedly, burned out, which I understand is a common experience among primary caregivers. Truth be told, these past seven months have been tough on me, although they've probably been tough on everyone involved in Mom's care as well as my dear husband.
My older sister wrote me a really nice email after we had our family meeting a week ago (referred to here). One of the things she said was, "[Cody], you are allowing too much weight upon yourself," and she's right.
And the truth is, I have sacrificed a lot to care for my mom. Jonah has sacrificed a lot for me to care for my mom. Nobody can ever say I didn't give my all during the time I've been here helping my mom, and I have tried my best to be the best son I can be to my mom. It, unfortunately, is someone else's turn to take charge of the situation, and I must let go.
I have a hard time letting go...of stuff, of people, of relationships, of responsibility (or perceived responsibility), of control. I am a person who very much likes to be in control, and unfortunately, I live in a world where that is not always possible. In this case, I am learning that I need to let go of the control over this situation I've carried for the past four years or so and let somebody else hold the reins for a change. That's really hard for me to do, but I think it is necessary...for both Jonah and me.
I've always been terrible at delegating or letting others take responsibility in group projects. I've always had this mentality (mistaken or not) that if I don't do it, it either won't get done correctly or at all. That's neither fair to me nor those I work with on specific projects. In the case of my mom, I need to trust that things will be done in Mom's best interest, and that those involved will do just fine without my constant presence. And it's not like I can't still do things to help Mom from where I am.
I do feel ready to talk about some of the things that happened at this meeting on Sunday that I just couldn't write about the night they happened. The bottom line is we have some tough decisions to make regarding Mom, and things will occur that will be less-than-ideal, and we will have to roll with that.
My neighbor, who lives across the street, has been a caregiver three times, and so she knows very much how this goes. She attended the meeting and gave us some suggestions based on her own experiences. Her advice was valuable and relevant, but sometimes very hard to hear. The emotional part of me is having a very hard time with the practicalities that are in store for us.
One thing brought up at the meeting was deep cleaning Mom's house and getting rid of some of the junk she's accumulated over the years. From a practical standpoint, I get it. There are things in Mom's house she hasn't used in years and which she probably won't even realize are missing if they are thrown or given away: tons of mason jars from her days of canning fruit; camping gear from when we went camping when I was a child; Styrofoam cups she acquired from an ice cream parlor she worked at years ago; an old typewriter; old power tools that belonged to my dad; magazines and books she hasn't looked at in years; clothes she no longer wears; old knick knacks that have been packed in boxes untouched for years; old decorations; old computer parts; etc. I get it. Much of it is unused and forgotten, and Mom will leave this house eventually, either because she's died or because she has to move somewhere where she can be better taken care of. We may eventually have to sell the house to pay for Mom's care in the future, so isn't it a good idea to start cleaning now; to get it out of the way sooner rather than later?
I get all that intellectually. I do. But emotionally, it's really hard for me. Mom has always been kind of a pack rat, and I suppose I have inherited some of that from her (although, as I've written in the past, I am trying to eliminate that habit). I have lived in her house more of my life than I have lived out of it, and of my Mom's four children, I have been the last to leave. Even having my own home with Jonah, I always thought that if I had the money, I would buy my siblings out of their shares of Mom's house when she passes away just so I could hang onto it and all the memories it contains. I've said in the past that I am very nostalgic, and no matter where I live, Mom's house will always feel like home to me.
But the reality is I don't have the money to buy Mom's house, and the reality is that we likely will have to sell it: either when she dies or when she moves into an assisted-living facility, so my dream of hanging onto it is most likely a pipe dream.
My niece and nephew, who have agreed to stay in the house and care for Mom until June, are admitted "clean freaks," which my mom and I, admittedly, are not. I think the clutter and perceived disorganization get on their nerves as does the fact that they live in a cramped area in the basement, and so they have really pushed the idea of getting rid of some of the clutter. Again, I get it. Intellectually. Emotionally, it annoys me. I wish it didn't, but it does.
I certainly can understand their wanting their own space and for things to be more tidy, and I get their practical suggestions of getting rid of stuff that is, admittedly, just sitting there as it has for years. But I guess the part of me who doesn't just see that stuff as "junk," but as my mom's possessions and part of our home's history, is disturbed by how easily disposable it seems to those who have little attachment to it.
The other day my mom had a really good day. My younger sister and her two young kids took Mom on a picnic in the park, and Mom had a great time. Mom received a really nice letter from my older sister. And Mom went to see my play and just had a lovely time. When I came home, she and I sat on her bed talking about what a great day she had had, and it was so nice to see her so happy.
Once she decided she was ready to go to bed, I left her and went into the kitchen to make a late dinner for myself. I noticed the kitchen had been cleaned, but something seemed odd to me. As I explored further, I looked in each cupboard and discovered that while Mom had been away to see the play, my niece and nephew had cleaned and organized each cupboard. Much had been thrown out and completely rearranged. This was something that had been discussed at the meeting. Their philosophy is that Mom doesn't even know what's in her cupboards anymore and, therefore, she won't miss anything.
I suppose I should have been happy. After all, they got rid of a lot of unused and untouched items and some garbage as well. The kitchen is very well organized and clean. I'm sure in their minds they're doing everyone a favor.
But I was annoyed. I am annoyed that things must change. I am annoyed that someone else is determining without her consent which of my mom's possessions is disposable. I am annoyed that throwing away each piece of Mom's stuff makes me feel like a little piece of her is being thrown away. I am annoyed that she isn't in a position to defend herself.
We have a cupboard in the kitchen that has had a vase in it for probably the last twenty years. When you open the cupboard door, the vase rocks a little. It's a terrible place for a vase, but that's where it's been for quite some time. No more. I don't even know where my niece and nephew put that vase. Maybe they threw it away.
We have a drawer in the kitchen that held a bunch of tools. The thing was crammed with them, and sometimes it was hard to open and close because the hammer on the top would get stuck. Now it's much better organized and easy to open and close. But I found myself missing the way it was because that's the way it's been for so long.
Another cupboard contained food items and miscellaneous crap. Now there's a bunch of dishware in there. It just feels wrong to me.
I noticed all of her old National Geographic magazines as well as some copies of The New Era from downstairs were in the garbage can with all the things they threw away from the kitchen. It just made me sad. I know in the long run, it's probably better to get rid of some of the stuff and, after all, it's just stuff. But it's stuff that represents the memories my mom and dad started building together when they bought this house in 1961. It represents the memories created by them and their children. It represents all the things my mom has hung onto since her husband died and her children moved out to start families of their own. I know it may be an irrational feeling, but it really feels like my niece and nephew are gutting the soul of my mom's house, and it makes me so very sad and a bit angry. And I think to myself, "What right do these two kids, who have barely started creating their memories with each other, have to dispose of all my mom's stuff in preparation for when she is no longer here?" Sometimes I wonder how they would feel if I went down into the basement and started rearranging their stuff without permission and throwing anything away that I felt was junk. I'm sure they wouldn't like it.
I know that there is no ill-will and that they are well-intentioned, but it just feels cold and callous to my heart even if my brain "gets it." Equally upsetting is that no one else seems as bothered by it as I am.
Well, Jonah is. Perhaps even more than I am, if that's possible. Culturally, he just doesn't understand it at all. Something like this would never happen in his family. He has felt very confused by it and defensive on behalf of my mom.
For the first time since I've lived in my Mom's house, I just want to leave. I don't want to be witness to all of this. I don't want to know what they're getting rid of. It will be too painful. Before I go back home to Jonah in two weeks, I will track down some of the stuff I absolutely want saved (I don't want them accidentally throwing away Mom's personal mementos from her school years, for example, or some antique hats my grandmother owned), but maybe it's better I not be here for the majority of the cleaning and desolation. It's too hard. I don't want to be here if they give all of my dad's old country albums away or throw out some of the old, outdated clothes my Mom doesn't wear anymore.
For a long time, I have been self-appointed "protector of the house," and now I feel I've lost that, and it's incredibly difficult for me, and while my Mom might not even notice (thus far, she hasn't noticed the changes in the kitchen), I feel defensive on her behalf.
And how do we know my niece and nephew won't accidentally get rid of something that has more value, either sentimentally or materially, than they realize? And if they're moving out in eight months anyway (as is their plan), what difference does it make if they have to stay downstairs with all of Mom's junk for a little while more? They've already done it for a year. I did it for several. I guess having lived out of a suitcase for many of the past few years, I just don't see what the big deal is. But then again, I'm not a "neatnik" like they are. In any case, it's so frustrating, and I feel helpless and devastated by it.
At the aforementioned meeting, my brother-in-law (also well-intentioned) said some things that really upset me as well. He seemed much more gung-ho to sell my mom's house and car and get her moved out than he seemed concerned about my mom or us, and I found that very upsetting. As I've talked with my sister, it seems she felt similar feelings as me. I told her that sometimes it's good to have someone as detached and practical as my brother-in-law in situations like this, but Sunday night I was in no mood to hear it.
My brother-in-law seemed almost more interested in self-gain, or at least. that's how it felt. Maybe he isn't, but as a realtor, he seemed to want us to put the house in either his or my sister's name, buy us out of our portion, and resell the house himself. This might not be so bad under other conditions, but the house is already in a trust, which is the safest place it can be; and my brother-in-law is not known for smart financial decisions, so handing the house over to him seems foolhardy to me...and my brother. Even my sister agrees with that assessment. My siblings are all united that the house will remain in the trust as it currently stands.
Ideally, we would would like to keep Mom in her house as long as we can, but as I stated before, we do not live in an ideal world. Having an outside caregiver come in is expensive as is moving her into an assisted-living facility, but at least if she moved out of her home, we could feasibly sell her house and use that money to pay for her care. This thought devastates me as well, but it may be the reality we face.
At this point, I don't know that my Mom needs a full-time caregiver, but I think if she had a live-in companion that would be ideal, and who knows, a year or two down the road she may require full-time care. But we'd have to find a live-in companion that is trustworthy, patient, and kind (and inexpensive) because it would be so easy to take advantage of Mom in her current condition.
This morning my older sister and I visited an assisted-living facility. Not a most exciting venture, but to its credit, this particular facility was excellent. It certainly felt more like a home than a sterile prison, as some of these places appear. The staff was terrific, and I really liked the philosophy of the facility, which focuses on keeping its residents active, validated, and independent. They encourage you to furnish the residents' living quarters with the resident's furniture from home and encourage you to decorate it with photos and family mementos. There was a courtyard where Mom could take a walk if she felt like wandering (although it wasn't as big as I would have liked). Balanced meals with a focus on free choice. Medication stations disguised as furniture so that it seems more like a home than a hospital. A resident dog and cat for pet therapy and companionship. She could even bring in her own pet if she wanted. Activities. Focus on residents' families taking an active role in their care. A free support group for families of dementia-sufferers. The ability for residents' family members to visit or even stay with them 24 hours a day and take them out whenever they want. If I were to put a parent in an assisted-living facility, this place is a nice one.
Unfortunately, it's also out of our budget. $4,000-$5,030 a month. Even if we sold Mom's house, she couldn't stay there more than three or four years before we ran out of money. I don't want to put her anywhere, but if we have to, I wish we could put her there.
Money has never been all that important to me. It's certainly never been my first priority in life. But I wish I had money now, if only to give my mom the kind of dignified life and care she deserves. Jonah and I both agree that if we had the money, we would get a place where Mom could live with us that could accommodate her needs. And when that didn't work out, we would get her the best care she could have. Sadly, no one in the family is currently in a financial position to do so.
I don't know how people pay for assisted-living care at all. It is so expensive. Even the cheapest places run $1200 a month or so, and those places are often holes with poor care. I don't want Mom to live her last days somewhere like that.
I think it's such a sad commentary in this country that our senior citizens can't even afford to live the ends of their lives with the dignity and healthcare they deserve. A person can work hard their whole life and accumulate enough wealth to live comfortably, but heaven forbid they get sick because this country will bleed them and their families dry.
We also realize in order to pay for Mom's future care, we need to curtail her spending and take over her fiances: yet another piece of my mom's independence going by the wayside. It's so upsetting. My brother and I are going to have a serious, bare-bones talk with her about her future and the realities we all face, and I do not relish that in the slightest.
There's still a part of me that's in denial about how bad-off Mom is and will continue to become. Even when we were looking at the secure part of the facility where the people with dementia and Alzheimer's stay, I thought to myself, "Mom still has so many of her faculties left. Does she really belong somewhere like this?" I certainly don't want her to feel like a prisoner, no matter how lovely the "prison" is.
I'm sure people are tired of hearing me talk about Mom. I'm not even talking about you who read my blog, but anybody who I talk with on a daily basis. It seems Mom is often at the forefront of the conversation. People are sympathetic and kind, but I'm sure it must get old and boring for me to bring up all the time. The thing is, I need to talk about it. I've even considered maybe seeing a therapist just to talk some of my feelings out. I just feel bad that I bring up Mom all the time, but it's good for me to talk it out.
The one good thing I've realized is that the amount of pain we feel is equal to the amount of love we feel for someone. I'm sure that's why this is so devastatingly painful to me: because I love my mom so very much. She has always been one of my best friends. It makes me sad to gradually lose who she once was and have to make hard choices regarding her care and future.
At last Sunday's meeting, after my two sisters and their spouses left and I was still trying to recover from the events of the night, I just started weeping and sobbing. I felt such a well of sadness. My sister-in-law, who's very sensitive, could see how hard much of the conversation was for me even before I starting bawling. She tried to help me as best she could.
I won't lie: this whole stage of life kind of sucks. When I came home from the meeting, already feeling drained and confused and still feeling somewhat guilty that I would be leaving my mother soon, Mom came out of her room looking so sad and forlorn. I asked her what was wrong. She started crying and said, "I'm all alone."
I said, "Mom, you're not alone. I'm here, and you have so many family members that love you."
She looked at me sadly and said, "I thought you went back [home to Jonah] without saying goodbye."
I said, "I would never do that, Mom." Then I just held her in my arms in the hallway for about two minutes.
This is hard. And I know it will only get harder. I'm looking forward to going home and being with Jonah for a while. It is needed.