Troubled times and exhaustion.

[It's all new 453]

I am two years out - almost. I used to post more regularly but as time has gone by I guess I lurk far more than I post.

I have been a caretaker for my mom for a few years as she has faced two metastatic cancers known to be terminal from the start. In that time, however, she has done really well and we have enjoyed trips together and relished every moment.

Just under two weeks ago I got married. A week later my mom's health took an abrupt turn for the worse. Now, I have been told she has only weeks to live. For the next few days I have some family support. After that, while I will have hospice to help me with pain management etc, they do not provide any care in the home.

Yesterday I fainted from dehydration and probably also not eating enough. It has been so hard to pull myself away, as she is suffering and I am the only one who can give medications and am in charge of all narcotics. (This is necessary as she can not manage meds herself and we need to have only one contact person for a few reasons including fear of accidental overdose if any miscommunication occurs and also to ensure that the narcotics are not stolen).

I am hoping that hospice can help me with some ideas. We don't live in a large city so hospice here doesn't have the array of services one might hope for and there are no inpatient hospice units. She will not be going back to the hospital for any reason.

So. I don't know. I guess I am babbling a bit. My weight drops and drops. 20 lbs in 2 months. I am 2 lbs from being in the underweight category by BMI - and that was all muscle loss. My physical fitness has gone out the window as I can't eat enough to exercise. I am exhausted. At 38 years old I haven't dealt with end of life issues before and have certainly never been the primary caregiver for someone in this circumstance.

I feel like I know the answers - make myself drink juices, Protein drinks, whole milk, half and half and heavy cream in order to get in enough calories to survive the next few weeks. That is the only way I am absolutely positive I know I can get calories quickly and efficiently. Actual eating seems to be more a once a day occurrence if I have the luxury of the time in addition to the energy to make it happen. Mostly I just want to curl up by my mom and try to BE with her and comfort her. If anyone has some concrete ideas, suggestions because they have been there, or words of support that would be great. As far as suggesting I get counseling - I have that covered. That said, I feel a great sense of peace about everything I have said and done, and the way that I have transformed my life since my mom's diagnosis and in her honor. I just need to survive these next weeks.

[swizzly 901]

Hey. Take it super, super easy on yourself. End-of-life care, even with the best hospice, is super tough. Just live through this. And then take stock when you can. But seriously: LIVE THROUGH THIS. It's the toughest thing ever. I send you hugs and support. You'll be okay in the long run, don't worry about right now. Focus on the grace of saying goodbye the best way you can.

[Texasmeg 568]

I have no idea what to say to you except I am so sorry for what you are going through. Please try to take care of yourself as best you can and get through this time. It sounds like your priority is precious time with your Mom and that is understandable. You know that you don't want to end up in the hospital yourself, though, so still important to take care of your basic needs. Take care and best wishes for managing during this difficult time.

[ProudGrammy 8,322]

caretaker for my mom

@It's all new

i can't possibly imagine what you are going through

it must be so hard dealing with this intense situation these past couple of years

as you said, the end is near

you must be a 24/7 caregiver to your wonderful mom

you sound/are so drained!!!!!!

to help your mom - you MUST help you first

neither one of you can afford to have YOU sick

downing a few Protein shakes daily is better than nothing

drink Water too

like you said - you do know what to do

you need to force yourself to eat/drink

no more fainting, or losing weight!!!!

you ARE taking care of yourself for HER

she needs you around to help her/care for her in your loving way

since you haven't been eating, gradually re-introduce food

but eat!!!!!

i'm glad you did have some good times/trips with mom these past couple of years

was your mom able to come/enjoy your wedding day???

if not, she was with you in body and soul holding your hand - embracing your day

wonderful memories

i'm sure/i hope your new hubby is trying to be supportive

take care of mom

but........like i said earlier, you MUST take care of you

don't waste away, you must eat and drink, plllllease

my thoughts and hugggggs are being sent to you and mom

take care

kathy

Edited April 5, 2014 by proudgrammy

[Txcowgurl 44]

You are in my prayers. Sending a big hug your way!!????????????

[1Day1Life4Now 882]

ItsAllNew: You are a wonderful daughter to care for your mom as you are. I know she appreciates and loves you more than you could ever imagine. I lost my mom very suddenly and never got to say goodbye, at least you will have that. My mother-in-law was in Hospice and that is where she surrendered her life. She knew she was loved and cared about until the very end and we were able to say our goodbyes to her. Neither scenario is easy... they are both equally painful but I prefer the latter if I had a choice. I understand your dedication to your mom and your lack of appetite but you have to take care of yourself. Others, friends, neighbors, relatives and church folks want to do things to help you but probably don't know how, be honest and let them know it would be good for them to bring you food each day. You know how important it is to take care of yourself so please make an effort so you will be able to be strong for your mom and able to be with her till the end. God bless you and keep you. Sending hugs.

[LindafromFlorida 1,542]

My husband and I took care of our 4 parents with Hospice involved, and my dear sister with ALS. Under the best of circumstances this is the most physically and emotionally stressful situation in the world. You are overwhelmed I am sure. I will lift you up in prayer to take care of yourself so that you can take care of your dear Mother. God Bless you both. Linda

[lsereno 2,525]

Try carrying your cell in your pocket, set to vibrate. Set reminders to drink and eat. If one goes past and you miss it, don't worry about it. Pre-mixed Protein drinks are the easiest way to get liquids and calories in at once. If you can eat a little Fiber in the form of fruit or whole grains, it will help keep Constipation at bay.

I am so sorry for all you are going through. Eating and drinking is a gift to yourself and your loved ones.

My thoughts are with you.

Lynda

[MichiganChic 3,262]

@It's all new, I am so sorry to hear what you are going through! I want to offer my heartfelt support. It's a tough road you are on, and your mom is so fortunate to have you. You are a wonderful daughter, and this is such a precious time.

I just wanted to make a comment on hospice - I was a hospice nurse and work in the field. There may be more help than you realize, even in a small town. What's NOT provided is a full time nurse aid or caregiver. Most of the care does fall to the family. However, there should be a great deal of help for you. In order to comply with the Medicare conditions of participation, the hospice must provide volunteers. Maybe ask them if there is someone who can come and sit with your mom a couple of times a week so you can take care of yourself? Also, you might be able to have your mom go to a skilled nursing facility for a couple of days so you can get some rest - it should be covered under your benefit for caregiver fatigue, and it's called Respite Care. Give your hospice a call and explore some options with them until you can get yourself well. Wishing you well.

[It's all new 453]

@It's all new, I am so sorry to hear what you are going through! I want to offer my heartfelt support. It's a tough road you are on, and your mom is so fortunate to have you. You are a wonderful daughter, and this is such a precious time. I just wanted to make a comment on hospice - I was a hospice nurse and work in the field. There may be more help than you realize, even in a small town. What's NOT provided is a full time nurse aid or caregiver. Most of the care does fall to the family. However, there should be a great deal of help for you. In order to comply with the Medicare conditions of participation, the hospice must provide volunteers. Maybe ask them if there is someone who can come and sit with your mom a couple of times a week so you can take care of yourself? Also, you might be able to have your mom go to a skilled nursing facility for a couple of days so you can get some rest - it should be covered under your benefit for caregiver fatigue, and it's called Respite Care. Give your hospice a call and explore some options with them until you can get yourself well. Wishing you well.

Thank you for your reply! And everyone for all of the replies. I have read the replies but had no time to respond. This morning I am at the urgent care because I have fainted several times this week. I thought it was due to stress initially - or dehydration - or not eating enough. Then, I started eating and drinking more. And the dizziness didn't get better. And yesterday I hired a caregiver for 4 hours per day 5 days per week. And my mom had a pain pump installed two days ago so that I know she can treat her pain even if I step away. Yet nothing is improving my dizziness. I am thinking that either I have electrolytes off or anemia issues or something more going on than I initially was considering.

So, I did hear from a volunteer yesterday who told me she could come by - but not on a set schedule. It didn't do much to set my mind at ease about getting more sleep. However, hiring a caregiver even just 4 hours a day, and my mom helping think of someone who we actually know already who we trust... that feels good. I am sure that hiring someone we know will have drawbacks and benefits, but I can think of far more benefits than drawbacks. Primarily that sense of trust is most important.

Hospice told me yesterday about the respite care. And I will choose that option if I have to. My fear is that my mom will die there, it is quite likely to be soon. And I don't want that for her. If I have to do it for myself I will, but I am going to try to avoid it. I think I will just push myself knowing that when she is gone I can recover. If that takes months for me to recover, then it takes months - because I don't want a lifetime of regrets.

I just started a medication to stimulate appetite a few days ago. I haven't noticed much difference but the doc will probably increase the dose more. I have an irrational fear that it is a step in the wrong direction for someone who is formerly obese. However, I absolutely need to eat more and gain weight. I am still losing a bit every day, and that just will be harder on me in the end because it is hard for me to gain weight.

I've continued with juice, but I think I need to take a break it is getting too hard on my sleeve and causing me severe stomach pain for an hour or so after I drink it - I think it's too acidic. I've also been using a lot of fats still for calories, but not getting much meat in because it is too filling and interferes with getting in enough other calories. I am sure that my approach is wrong at this point but have no one to help me with a better approach. My mom requires constant supervision with her diet, because of a procedure she had recently - if she eats the wrong thing it could result in death even sooner. It's one more layer of stress, basically.

Anyway. Fingers crossed that they figure out a solution for fainting and dizziness for me. And fingers crossed for no suffering for my mom. And thank everyone for the many replies and ideas and support. It does mean a lot especially in a time like this.

[It's all new 453]

ACK!! I had my thyroid tested six months ago and it was fine. I have always had hypothyroid, which was barely into the normal range and that was good enough. Went to the urgent care today - I have major hyperthyroidism going on. The doc thinks that explains most of my physical health issues. (Weight loss being a huge problem, dizziness, heat intolerance, etc). So, I will cut my levothyroxine in half and test again in a week.

If I can get my weight back up into the normal range and stop the dizziness and fainting - I can make it through this while caring for my mom. I really can. It is wonderful to have the time with her combined with terribly sad to see her failing, but if my health would cooperate I can do this. Fingers crossed.

[MichiganChic 3,262]

@It's all new, I'm so glad you were able to hire a care giver! It's usually our first recommendation, but because it is expensive, not everyone can do it. Hiring someone you know is a good idea if you are comfortable with them. You are giving your mom the sweetest gift of all. I think dying is one of the most important aspects of living, and I can tell from your approach that you are a shining example of a loving daughter. Taking care of yourself is a way of honoring your mother, too.

The impending days are going to be tough emotionally, so make sure to lean on your hospice providers. Take advantage of the services they have. Usually the social worker and spiritual care providers are wonderful, and can offer great perspective for you both you and your mom, and any one else in the family who needs it. You might also check with your volunteer coordinator and see if she can find someone who could come on your schedule, rather than their own. Also, the nurse and home health assistant can (and should) stagger their visits so that if you need to get out during their time for a few minutes, (If you don't need to be there with them). Lots of time it is nice for the patient to have some time alone with them, too. All of these things are intended to shift some the burden away from you so you can focus on what's important - the time you have with your mom.

I'm glad they actually found something with your thyroid, maybe things will level out for you physically. Who ever thought any of us would be trying to figure out how to gain a little weight?

Let us know how you are. Hugs.

[feedyoureye 3,087]

I so admire what your doing. It will give you comfort into the future that you know you did what you could for your mom, loving kindness is the best gift. I do hope your change in meds will help with your exhaustion... I was going to recommend taking your meds (food!) when your mom does. keep some good Protein Bars in your pocket... even if your not hungry, eat them like the medicine they are for you. I buy Protein smoothies now and then when I want to get in more greens and nutrition when Im sick and dont feel like cooking. Bolthouse at Target has a good green smoothie...odwalla as well. Best of luck to you and your mom in your precious final moments.

[It's all new 453]

Thank you all for your kind and thoughtful replies.

I lost my mom two weeks ago tomorrow. It was one of the most difficult things I have experienced, to see her fail. In one sense a blessing, as she always hoped the wheels would fall off all at once - and they did. She had three weeks of more profound illness and then she passed. The last 10 days were the most difficult, and the last 6-8 hours were brutal. It wasn't what hospice had led me to expect (not that it was their fault in any way) and it was traumatic.

I wake up with nightmares every night since. I feel confident it will improve as each night the nightmares are a bit different. At first I woke up convinced my mom was in the bed next to me and had passed away. Now I dream that my siblings have decided that her death is my fault. I figure the fact that the dreams change is a good thing. My husband and I had been married one month - to the day - when she passed. It's tough. I miss her terribly.

My weight did not stabilize with the medication change but I did stop fainting. I figure it is a good enough improvement for now. I don't generally feel like I can eat - it seems stress related. I say that because last weekend we went away and I did better. I am now underweight but trying not to worry too much. Once the house is cleaned out and the estate is stalled , then maybe I will feel better.

Thanks again!

[UK Cathy 977]

I'm sorry for your loss. As others have said the fact that you was able to be with your mum until the end and take care of her will be a great comfort to you in the future.

At the moment you are feeling lost and raw and you must take care of yourself, even better let your lovely husband take care of you as I'm sure he wants to.

Allow yourself to grieve, shout, scream laugh - whatever it takes. Sit and remember your mum and all the lovely things you did together, remember her words of wisdom and love.

You are in my thoughts and prayers. XX