This will not be a very poised or eloquent post, sorry about that. Last evening I got a call back from the amazing nursing home down the street. There is no way that GM can be admitted there unless she is a private patient. Private patient is code for “insurance doesn’t cover us”. To have GM under their care would cost around $300 a day. Something that is utterly impossible.
I did not take the news well. Saw it as a total rug pulling moment from the Universe. Completely lost it. Sobbed for hours and felt blanketed in deep, deep sadness.
It was within my crying that I realized that pretty much the only thing that was keeping me going, keeping me sane, was the idea that I could take a month off from taking care of GM. That she could be out of the house, taken care of and safe, and I would have the freedom to simply be a new Mother.
Now I have to imagine the worst scenario- no break. No moment to catch my breath. No pause from the stress and anxiety of Alzheimer’s. No ease in transition to figure out how I am going to be a Mom and a caregiver. It is crushing me.
In a few hours I have the hospice care consult and you can bet I will be asking her for input/advice/help. But realistically I don’t know what they can do.
I know I must seem so self absorbed and neglectful, but I just really, really wanted some time for myself. I wanted to be able to enjoy this last stretch of pregnancy without having to jump up ever thirty minutes to take care of GM. I am so tired., So beaten down and resentful.
I am pissed off in a giant way at my body for failing me for so long. Those three years have made all the difference in GM. I am sad all over again about the unpregnancy. I keep imagining that if that pregnancy had lasted I would have had my baby last September and then I wouldn’t have an overlap of newborn and this version of GM. I mean, hell, how come I couldn’t manage to get pregnant after all 13 of my IUI’s?
Don’t get me wrong- I am thankful so so much to have Snork rolling and turning around inside of me, but I am just feeling stressed and worried. I am feeling scared.
And I am pissed off at Alzheimer’s. That is a constant. I hate that it has stolen the core of GM from us and I hate that it means that I have spent the last 6 years of my life caring for someone that barely even knows me most days.
I am just all over the place right now. Messy emotion overload. I am stressed and worried and feeling trapped. I want somebody else to take care of GM for a little while but there is no one else available. No financial way. It’s just me. And I am now losing myself just trying to keep my head above the water.
{ 42 comments… read them below or add one }
Is there another nursing home in the area with an Alzheimer’s program? When my grandfather needed a nursing home, there wasn’t an opening in our first or second choice. Luckily, there was a third option, & it worked out pretty well.
Maybe hospice will be able to figure something out. After my great grandmother’s stroke, hospice took care of her almost totally. They sent someone who stayed around the clock, got up with her in the night, & took care of all medicines, dressing, & bathroom stuff. So maybe that would work for you?
I have no idea what any of this would cost though.
I hope you get somethng worked out. You’ve done so much for your GM. Its okay to not be able to do it all anymore.
You are NOT being selfish in the slightest bit. This is an already crappy situation, and you are facing a time when you’ll not only want but NEED a break. I’ll be praying for the whole thing.
I couldn’t imagine the pain you are going through. I took care of my two terminally ill Aunts for about 5 years, but I was thankful that they had a sitter during the day when I could go to work. I don’t think you are selfish. I think people that have never done something like what you do everyday could never judge you. Being a caregiver was one of the hardest things I’ve ever done in my life. You want some time to just be YOU and figure YOU out. No harm in that. My heart goes out to you and I will pray for the best to come out of all this for you and GM.
i am having a good feeling hospice can help.
there is so much i want to say, but i know you head and heart are on overload and it may only sound like the charlie-brown teacher right now… so i will only tell you what is important:
I LOVE YOU and we are all here holding you hand.
it may not be much, but its what i’ve got…
please call if you need to, ok? anytime day or night babe…
all my love,
gypsy
*sigh*
I really, really want something to come through for you here. Go Hospice.
Sending word out to the universe…
Hold on there, honey.
You’re not selfish or self absorbed. Every person in the care giver industry (which does include you) needs a break. You have every right to feel the way you feel and want the break you deserve. I don’t know how, but the universe must right itself for you. You’ve been delt far too many knocks.
You’re a wonderful person, and an already wonderful Mom.
Love you, dear.
P.S. In my Human Growth & Development class we learned a great deal about hospice. From what I understand of the system (in Texas at least, I don’t know if it’d go for Florida) hospice is a greatly underused service. Depending on the city you’re in, volunteers and employees could range from RNs to massage therapists and harpists. That’s something to hold onto.
I am just wanting to reach out and hug and hold you right now.
Being a caregiver is the hardest job in the world. You are in no way being selfish for wanting a break. Everyone gets at least a few days off work – why not you? I am hoping that hospice has some ideas for you. And I’m wondering if you and GM couldn’t qualify for some in home support through your state’s public programs? Most states are so eager to NOT see nursing homes fill, they offer what they call “bridge” programs for families who care for their family members at home a little longer.
Ugh, I’m so sorry. You’re definitely not self-absorbed, selfish, or anything of the sort. You’re having a baby, and you deserve all the time to prepare for that that you need – physically AND mentally. You’re obviously still putting GM first – it’s not like you’re abandoning her needs, and that’s great, but you can’t forget yourself in the mix. Is there another alzheimer’s care facility that would take GM? We had to put my g-grandma in the mental care area of the hospital for 2 months before there was a room available at the long-term care facility. Please let me know if there’s anything I can do to help, I’m always up for internet research.
Please, please don’t blame yourself for wanting a little time, Lord knows I’m already taking more than my fair share. *hugs*
i’m a long time lurker, but don’t post often, so i hope you don’t mind me throwing ideas at you.
have you tried contacting your local office of aging? i used to work there and we would get many calls from family memebers caring for loved one who for what ever reason could just not do it anymore. we would help them find placement, whether it be a nursing home or adult daycare. there are alot of programs that can help you. i’m sure about your state, but in pa there are federal funded prgrams that could halp with the cost.
there were times when family member would just drop the person with us and we’d have to find placement that day. hopefully hospice can give you advise as well.
i am a single mother (by choice, thru ivf as well), it’s not the same as your situation, but i care for my half-brother who is mentally challenge, he came to live with me when i was 6months preganant, so i have an idea of what your going thru.
please email me if i can be of any help
kristi
do the Alzheimer’s program have anything to help you all . help is wonderful. if she cant go into a nurseing home then maybe a 24/7 nurse to stay and help if her insurance would cover it?
your not selffish your about to embark on a new path in life with your baby… sometimes you cant be caregiver to everyone just to you and your baby…
huggles you hard
I’m so sorry you feel awful. I can’t imagine how you made it this far without going completely bananas.
The hospice person should be able to give you some direction. For now, try another nursing home. Try every nursing home within a hour’s drive of where you live. There may be waiting lists, but if you get on some at least you know that help is in sight.
Check out private duty nurses who can take care of GM at home for a month. It’s not a perfect solution and it will be expensive, but at least you won’t have the burden of care for her while you’re recovering from having Snork and learning how to take care of him. Newborns sleep a lot! That’s a wonderful thing if you can train yourself to catnap while they sleep. I never could. I used that time to get things done and ended up feeling like a zombie from lack of sleep.
I guess GM doesn’t have long term care insurance? have you checked to see what her insurance entitles her to? If she doesn’t have a large estate, you might consider turning over what money she has to the nursing home. Some accept a lump sum in return for care until the end of a patient’s life.
Maybe you can relax a little and not sit with/monitor GM every second? It doesn’t seem like she’s the type to leave the house when no one’s watching or get up to anything destructive or dangerous. I’m not saying you should ignore her, but try and catch a few zzzzzs.
Good luck with the hospice person tomorrow!
Keeping you in my thoughts, Calliope, and honouring what you are going through. It is a huge responsibility to care for someone in as much need as your grandmother, and the emotional aspect of caring for someone who often doesn’t know who you are cannot possibly be overstated. Self absorbed is the last thing you are. Wishing for a good resolution to this that allows you the time you need to transition into motherhood in exactly the way you want to.
I really want to come to your house and help you. I wish that was possible. I’m not sure what else I can do or say except that you are not selfish for wanting a break. Being a new mother is an amazing experience that you should be able to drown yourself in. I’m sending prayers your way that this will all work out for you.
I’m so sorry. I wish I had something to offer that would help the situation. I will say that please do not feel bad about feeling like you need a break. Caring for someone else especially when it’s a 24 hour a day job is extremely difficult. It is completely understandable that you would want or need a break in order to be a mom to a newborn. Hang in there and I hope that hospice is able to provide something helpful to you.
Before I begin, let me start by saying I am not implying you have not done your research, I am just offering what little I know. Have you explored Medicare options? I know it covers up to 150 days in a skilled nursing facility depending on the diagnosis and what put the patient in there in the first place. You should look into what Medicare might cover for GM, it’s possible it covers more than you realize. Granted, it might not cover the places you feel comfortable placing her in, which is clearly a top concern and a whole other issue, but financially, Medicare might cover some of her inpatient costs.
Good luck, I am sorry things are so tough right now.
PS – You are not selfish for wanting some time for you. You are a caregiver who still has needs and emotions of her own, not a robot.
I’m so sorry for all the stress. I am putting all my hope in the hospice lady, and hoping she has some good suggestions.
Sending much love.
The previous poster was correct in the Medicare will pay for a certain amount of skilled days, in Ohio it is 120 days or 4 months. The only problem with that is usually they need to be admitted for 72 hours in the hospital for those skilled days to kick in. I know it is hard on your Grandma to be in the hospital but this may very well help get you the care for her you need. I recommend calling yoru area agency on aging and they will have this information for you. I am so sorry, I know it is so overwhelming. I will continue to keep you in my thoughts.
My only two suggestions are what we did with my grandfather. The first was adult daycare which gave a break in the day which helped and the other is to try and hire someone to help you like a babysitter. We actually had a retired man (he was in good health, just wanted a little extra income) come and sit with my grandfather to keep him company and give him a snack or drink – not like dressing or difficult things like medicine giving. You can be there but not have to do everything. Even a high school girl that would come a couple hours a day so you could take a nap or put your feet up why GM watches a movie or tv. Just a thought. Good luck with your appointment with hospice.
If I am still living here, I have been planning to come down and take care of you a bit. I hadn’t mentioned it yet because I wasn’t sure about moving plans (and still am not sure) but I have been thinking about it. Elizabeth and I can certainly help you and the Snork get through that first couple of days and get settled in, until you feel better. I know it isn’t the whole solution, but it is at least a bit of hope at the moment.
Just wanted to give you hugs and much love.
In terms of assvice, you may also want to look at getting a geriatric care manager. they can do all the research and phone calling and coordination of agencies to create the best plan for GM and you.
The hospice nurse may have some good ideas. I hope so for your sake. You need a break, and I don’t think you can wait very long. You are experiencing some serious caregiver burnout and you need a couple of days off right now. Perhaps you can sit down with your Mom and work something out. She can take some vacation days and take over for you. Do not wait to do this, you need a break NOW.
No advice here — just feeling sad for your dilemma, and wishing there was something I could do to help.
I too hope that the hospice lady has some ideas. I’m sorry this is so hard. Is it possible for your Thursday help to do an extra day for awhile so that you get more of a break now?
Att is right ~ hospice is SOOOOOOOO underused. its a phenomenal program, i worked for a hospice for 2yrs and it was one of our biggest obstacles getting the word out there for people to check into it…
calliope, i am holding all my hope out that hospice will be able to help you and mother with GM and help A LOT… the nice thing about hospice is, they have things in place that also end up caring for the family as well and being wonderful support to the family of the client. which i think you and Mother could use some of that TLC too…
love you
OK… I love all your smart readers and their ideas. I hope there’s something here that can help you all out.
You aren’t being selfish. At all. Seriously, what other job requires someone to be on call all the time? Of course you need a break and maternity leave.
You are anything but selfish, and I am thinking that hospice is going to be of great assitance to you. There is a lot that they can do, and there are a lot of resources that they are aware of and can direct you toward as well. Hang on to that–you’re going to get some reprieve.
For now, though, I’m holding your hand and sending you love.
No advice to share just wanted to send my support and my sincere hope that things ease for you soon.
In Australia full time workers finish a 40 hour week and get 2 days off, then 4-6 weeks paid holidays off a year and 12 weeks paid maternity leave. There is a reason for this! Don’t for one moment think you are being selfish. Your responsibilities are 24 hours a day and I can only imagine how physically and emotionally draining they are. Of course you need a rest. You have every right to have a life and be a carer and I’m hoping some very nifty problem solving will allow you some well deserved and needed YOU time. xxxx
All my assvice is of zero help given I only know about stuff over here so sending you a virtual hug instead.
(((hugs))) If I lived closer I would come and help you myself.
You are probably the least self-absorbed person I know. Being a caregiver is exhausting, and it is emotionally and physically healthy to take a break. I know you know this, but I thought you might like to hear it.
Have you checked into your local Area Agency on Aging and the National Family Caregiver Support Progam? You may qualify for special funding and they should offer social services support.
All the assvice I have…
Hoping that you find the perfect solution for you and your family.
I understand the nursing-home madness. We went through a lot of that last spring with Dad, although I wasn’t the one doing the battling.
Is there an Alz day-care program locally? Our community has one, something you could take her to in the morning, and pick her up in the afternoon. Even a few days a week, it’s a good respite for caregivers.
You have EVERY right to want to enjoy some time as a new mother. And you have every right to be pissed off.
Lots of love and support to you, dear.
Nope. Not selfish at all. Many people take maternity leave from their jobs and get the break that they need, and nobody calls them selfish.
Keep advocating for yourself. There have to be answers out there, even if it’s just a day program at a senior center. (A family friend with advanced dementia gets picked up at 8 and dropped off at 4… and I’m pretty sure they do something with her midday… kidding… of course they do.) It gives her daughter just enough breathing room to continue caring for her whilst working full time. There just has to be something.
Thinking of you and wishing it could be easier.
“I know I must seem so self absorbed and neglectful, … ”
Um, no. That is exactly how you do NOT seem , my dear. Just offering you some objectivity.
I am hoping and praying you will find an answer that will work for your family. HUGs.
YOU ARE NOT SELFISH!! You are the opposite of selfish.
You need maternity leave like anyone else.
No one could possibly doubt your love for GM.
Hoping the hospice consult will be a big help.
xoxo!!
Not self-absorbed, not neglectful. You not only DESERVE some time to just adjust to and enjoy new motherhood, you will NEED a break from the physical demands of caring for GM after giving birth to recover physically! You’re not supposed to lift anything heavier than your baby for a few weeks after, and if you don’t spend most of your time lying down for the first few days you’ll probably have a lot of bleeding/swelling issues (trust me, I’ve given birth and followed the aftercare recommendations, and done it and disregarded them–YOU WANT TO LISTEN TO YOUR DOCTOR). This is not even about what you want and deserve, it’s about protecting your health so that you will be able to care for your son AND your GM after Snork is here. That said, it’s ALSO about what you want and deserve, and THAT IS OKAY. You need to bond with your baby. Since he’ll be an “only” you will seriously kick yourself if you don’t take that time one way or another, and I would even say you owe it to the little guy to focus on him for at least a couple of weeks after he is born (especially if you want to breastfeed–that’s a full-time job at first in and of itself).
None of us are judging you for advocating for yourself in this situation, Calliope. I don’t know of anyone who would except your own inner voice (mine is a bitch too), and sometimes you need to tell it to STFU. Here’s hoping Hospice can help you out.
I know that everyone has beat me to the punch but I just wanted to chime in and say that it’s absolutely understandable why you would need a little time for yourself. You’re going through so much at once and will have so much more to adjust to once Snork is born. Looking out for yourself if going to be the best for you, the baby AND GM. So don’t give yourself a hard time and know that we’re all wishing you the best!
Haven’t read the next post, haven’t read the comments, just want to say, to shout, YOU ARE NOT SELFISH.
your blog is blocked at my work, so i’ve been waiting for hours to say you are totally *not* selfish or self absorbed. it is completely understandable that you need and want help. i am so glad you’re getting some.
You are not selfish or neglectful at all Cali – I have not read your next post yet so a solution may have been found already, but I wanted you to know that you are ENTITLED to want to have that month with Snork. More than ENTITLED. I’m sorry that that bloody aweful disease may steal that from you.
HUGS
xxx
simply sending you buckets full of love.