Re: I'm Taking Care of My Mom
 

I'm very impressed by how you "muddle along"-should we all be lucky enough to have such daughters! I had a lovely Mothers Day- kids made us brunch and we went to a delightful film called "Babies" which (amazingly enough) I thoroughly enjoyed. Hope your day brought you some good times.
Stay well. Trish

Re: I'm Taking Care of My Mom
 

merry,
hope this will help you in any way..
http://www.cancerstory.com/caregiver.jsp

Re: I'm Taking Care of My Mom
 

Thanks MA in TX....I get out of the house every night for an hr or so to walk the dog. Mom's got a big, rowdy boxer that strayed into her life and she never taught him any manners, or discipline so I'm trying to get him to be a better dog. He'll have to come live with me and my husband and our other boxer when I go back to NM. I'm just overly frustrated trying to care for her, and her house. She's a hoarder and there's so much crap that I can't even make a dent in it. And I'm a fanatical type housekeeper so this mess makes me crazy. She has been taking care of my younger brother all of his life so he has no clue on cleaning up after himself. If I don't cook for him, wash his clothes, pick up after him, or make his lunch, Mom tries to do it. If I say anything to him, it turns into a terrible argument so it's not worth it. I just try and bite my tongue and continue on. And it's awful having to live in this house. It's so cluttered, dusty and dirty. I can't clean enough yet it never looks better. She has a cockatiel that never shuts up so that keeps me from getting any decent rest.
I wanted to take Mom to NM to live with my husband and I. He is more than willing to help care for her out there. She won't go. I understand why.
She refuses to allow Hospice to start coming over. She feels like if she does, she's "giving in" to the cancer and will die that much sooner. The "experts" said she wouldn't see Christmas and here she's into Mother's Day already! Thank God! She won't even consider a wheel chair for the same reason. She told the Visiting Nurse that being in a wheel chair is the last step before dying. I tried to explain that it would be the best way to go shopping so that she wouldn't have to be so out of breath by trying to push a cart around Walmart. So no Hospice help and no wheel chair, or scooter, lol
There's some good times too, like a few days ago I gave Mom a perm and she loves her curly locks! She would never let me before but now I can fix her hair for her every morning and she loves it. I pick flowers from her flower beds and bring them into the house so she can enjoy her blooms. The dog makes her smile and laugh and she's happy that he's so taken with me. My brother hates the dog and is only nice to him because of Mom. We go to lunch to see my Uncle or cousin and she enjoys that too. I hope to get her a scooter so she can go with me when I walk the dog.
Sunday she was able to roast a chicken and that made her feel good. If Hospice could start, I think I'd take a day/night and spend it in a hotel room with a large bed, a large pizza and a 6 pack! LoL It would be amazing to get some real sleep away from cobwebs, large, ever growing dust bunnies, and that screeching cockatiel of hers.
I know I sound like a whiny bitch and I don't mean to be. I miss my privacy, and my independence. I don't really know how to talk to Mom about dying either. She's always saying "and when I'm not here anymore...do this or that." I know she's scared and I don't know what to say. Each of us will face our deaths in our own way and all I can do is fix her a cuppa tea and a grilled cheese sandwich, LoL
Some help I am! Not very good spiritual help.
Well, thanks again MA...and thanks to everyone who kicks in with a suggestion or a good vibe. It means a lot to me! Peace, G

Re: I'm Taking Care of My Mom
 

merry,
you say or write the things that I would not be able to describe in a vivid and honest way. I love my mother and my daughter too, its like I am in between this 2 great loves and I always felt am not doing enough and wanted to do more for the other, but cant, its always half or even quarter of myself.. thanks for your courage in airing out what I could have not done myself.

I reckon this could be therapeutic and should try it myself.. :) hope you find something fun to do with your mom.. something you will cherish for a long long time..

Re: I'm Taking Care of My Mom
 

Merry, doing the things you do for your mom is spiritual help, you don't actually have to say things. Just being there (and you know exactly how hard that is) is more eloquent than anything you could put into words. Believe me I completely understand the claustrophobia you feel and add the cockatiel and it sounds like a nightmare! And yet you keep doing it-the grilled cheese sandwiches, the perms, the flowers. These are the things that give life real meaning if you ask me. I am going to show your last post to my sister-she will completely understand too. I am sorry you haven't got a sister but I am glad you have a great husband back in NM.
Trish

Re: I'm Taking Care of My Mom
 

Tras...I get that from my Mom....lolol Takes me awhile to get back here with all the stuff I get caught up in here. Mom had to have her lung tapped, and it didn't re-expand like it did the first few times and she had to have 3 xrays which she bitched about because of the excess radiation, lolol she says THAT is gonna kill her first! It still hasn't expanded, and I'm pretty sure it's cuz of the tumors in that lung and the fact that it's working harder than it normally would. It's just a closer step towards the inevitable end of the road. I was talking to a Scooter Store about Medicare getting her a scooter but the guy tells me that Medicare is more about going as cheap as possible and since she can mostly get around the house with her own power or a cane, they would feel she's ambulatory enough. SO..the Visiting Nurse Assc. is gonna pay the rent for a scooter for a month! It's $250 a month and somehow I'll find a way to get another month if she likes it and can use it. I just want to be able to get it into the trunk and take her to the river where I walk the dog so she can be outside and enjoy Spring. She's being stubborn about it because she has to learn how to drive it and acts like she's too stupid to figure it out, lol.
And so it goes. My brother has decided he doesn't want to go to work and he's using the Family Med Leave Act to get time off. Sadly, he spends the time sitting in the shed listening to the radio and drinking instead of helping his sister around the house or spending time with his Mom. He is lying to his job about Mom needing him home, but he DID take her to the hospital twice last week for the xrays and tapping so I could take the dog to the Vet. Will wonders never cease!?! LoLoL She told him to go to work but again, I went out early this morning to walk the dog around and he was passed out in his car. What a great family I have, eh? LoL If he was truly a decent and caring son and brother, he'd offer to do what I do for Mom and let me fly home to be with my husband and in my own home for a little while. But I know what would happen if I left for a little while...Mom would be trying to cook, clean and take care of him and the dog and herself while panting for air. She insisted on making dinner Sunday and I let her except I peeled the potatoes and got all the pots and pans and ingredients out for her and I cleaned up the kitchen because by that time, she was too exhausted. She kept apologizing for the mess and I just smile and make a joke about it and clean it up. I want her to do whatever she thinks she can do while she can. I can't make her breakfast cuz she likes her oatmeal a certain way and I can't do it her way so she's ok doing it herself. I can't take away all of her 'usefulness' or indepedence and I don't want to.
I truly appreciate being able to 'vent' here and have you wonderful people put up with my complaining. It truly helps me and I wish I could get back here more often. The poor dog came down with Lyme disease and I have to give him meds, give Mom meds, and I just hope that I don't accidently confuse who gets what! I told Mom last night that if she she tries to lift her leg to pee, I may have accidently given her some of Shooter's meds! LoLoL She said she'd let me know...hee hee hee.
God bless you and everyone here. I'm not sure how I found this site anymore, but I think an Angel in Pink showed me the way. Peace, G

Re: I'm Taking Care of My Mom
 

Merry,

I am taking care of my mom too she does not have cancer but has congestive heart failure. I was advised to get hospice. At first I was horrified, but after talking to people I found out that hospice can help a patient for longer than just a few weeks. They can help her feel more comfortable and even provide drugs and beds that might make her feel better. You need someone to help you and you need to be able to get out and just be outside. If a nurse or aide comes to help you you can at least get out for a half hour break and it will make it better for you and your mother both.

You need to take care of yourself in order to take care of her.

Re: I'm Taking Care of My Mom
 

Hi Ladies -
You are awesome to be giving up your life to help your mothers. I have been doing that more lately, but now am in the THICK of it since she is home from the rehab facility. (She broke her upper thigh bone near the hip.)

The expense for round the clock home care is really a lot, so my sister came back from Florida for a while (unknown at this point) and I am here getting her up to speed with everything.

So if I seem MIA, I am not ignoring the boards here, just otherwise very busy.

Re: I'm Taking Care of My Mom
 

Been awhile for me to be back here, but I get so little time that getting online isn't a priority, as much as it helps me get away and interact with others. The Visiting Nurse keeps explaining to Mom about Hospice and the drugs that they can give her that will help. There's one in particular that even temporarily shrinks tumors. She refuses Hospice. She says she isn't ready for them. So, I am left to deal with her alone. It wouldn't be so awful if my brother would do something besides get stinking drunk every day. He won't even go to work, using her illness to abuse the Family Medical Leave Act by lying and saying he needs to be home to help his Mother. Ha freaking Ha! He's a spoiled rotten man and unfortunately, it was my Mom who did this to him. He has been taken care of by her his whole life. She has picked up after him, washed his clothes, hung them out to dry, folded and put them away, cooked and made his lunch. So, if I don't do it she'll try to do it herself and she can barely walk because her oxy levels are low when she does. I can't tell you how angry I am at him every time I have to re wash the floors because he tracked in crud or wiped off the counters because he eats like a pig. He'll wash his clothes but leave them in the washer. I'll do it all for my Mom but I'm stressing so bad over her illness and trying to take care of her that the Family Doc wrote me a script for Zoloft, lolol I need uppers to keep me going, not something that will turn me into a zombie! I can't talk to my brother because he never wants to hear it. I'm just tired and I want to go home to my own home where my husband is and where it stays clean, and the weather is always sunny and warm. I've not seen the sun for over a week and all it's done is rain. I have chronic sinus problems and the headache never goes away.
My cousin is having a picnic and invited Mom and I but she can't go because she says her lungs are too full of fluid and I should go. I told her I couldn't possibly have a good time with worrying about her! I called the hospital because she has a standing order to have them drained but it's a holiday weekend and she'll probably have to go thru the ER to get it done, and she refuses to go! She told me to go to the picnic, that my brother will watch over her but he's outside drinking. That certainly makes me feel SO much better!! Maybe I should go anyway and not think about it?
I'm so sorry for rambling on and whining but this is the only place I have to bitch, and you guys are super for putting up with it. I did get to go out for lunch with a friend yesterday and I had a beer for the first time in months and it felt so good! I even bought a cool Western hat for when I go back out there, lol. I'm glad that God has let my Mom be here longer than she was supposed to be, but it's making me crazy living in her packrat house and never getting enough sleep.
She wants to fight this disease but won't take chemo anymore because it makes her so sick. She also will not go back to her Oncologist because she feels uncared for and all they want to do is give her chemo. She wants to try radiation but they said it wouldn't work. I'm going to call her Radiologist Tuesday and ask him what he thinks, if I can talk to him at all. The cancer hasn't spread to her organs according to the last test, and it's only in her left lung but the tumors are growing. I've never seen such a lack of concern and care by the Oncologist and don't blame her for not wanting to go back. But she needs to do something besides watch TV and wait to die. I can't even get her a scooter because Medicare says she can get around the house well enough and won't pay.
Well, I've complained enough so I'll go now. A big hug to everyone who is caring for their Mom or another loved one, and more hugs to all the survivors! It's Memorial Day, keep the memory of the ones who have gone before alive in your hearts..peace, G

Re: I'm Taking Care of My Mom
 

It doesn't sound like things are getting any easier. glad you got out for lunch and I hope you go to the picnic with your cousin.
Thinking of you,
Trish

Re: I'm Taking Care of My Mom
 

Merry,

Below are resources for caregivers provided by NBTS:

• The Family Caregiver Alliance provides fantastic support for caregivers. Check out their website to search through their Family Care Navigator for local resources and support in your community. For tips on ways that caregivers can care for themselves, take a look at the National Cancer Institute's Caring for the Caregiver.
• The AARP Foundation's Prepare to Care provides A Planning Guide for Families where caregivers and patients can keep track of appointments, questions for their doctor, finances, and helpful resources found along the way. The information is geared more towards adult children caring for aging parents, but many of the checklists and action items can be adapted.
• For spousal caregivers, try Young Cancer Spouses or Well Spouse Association to find more information and support on how to best care for your partner.
• To connect or speak with other caregivers over the phone or online, read more about our Caregiver Support Network.

Re: I'm Taking Care of My Mom
 

Trish..I think you're right..my husband who took care of his wife in her last stages tells me it's not going to get better and he's right. But I think I could handle things better if my brother would pitch in instead of creating more havoc and tension and treating me like I'm some kind of interloper. Or space invader, lol
I just got a bit crazy the other day and this is the only place I can vent a bit....you guys probably think I'm completely crazed!
Thank you for putting up with my raving lunacy...and it's not even a full moon, lol. The weather doesn't help either, it's been raining and gray so I can't get out of this house even to be out in the yard. I miss my privacy, but I know I'll miss my Mom more....hell, I already miss her.

Jackie..thanks for those links...I'm gonna look into them. Mom says she doesn't want "strangers" in her house so she won't let Hospice help out. Too bad, I'm gonna have to explain that I need some help too. Man, this is what I get for being so rowdy as a teenager...eh? LoL
Thanks again and God bless every lovely one of you!

Jackie...and God Bless Texas! The hearts of Texans are as big and wide as the Lone Star State! I'm kind of a neighbor because I live in New Mex..about 3 hrs West of El Paso....in the heart of the Chichuachua Desert....beautiful land! Peace, G

Re: I'm Taking Care of My Mom
 

Merry, you were at the end of your rope last time you posted and we are glad to help you hold on!
As has been said before, maybe you just need to set some boundaries there and say how it has to be. That the help is for YOU and you can't keep on without it. That you need some respite. Period!
Your brother is a whole other story. I suppose he does not consider sobriety an option?
I always say "keep the faith" and I hope you will! It is not always going to be like this and you will get through it.
PS: Zoloft will not necessarily turn you into a zombie! But it sure might take the edge off. Why not try something for stress?

Re: I'm Taking Care of My Mom
 

We are with you in spirit. Just keep doing what you need to do...and vent as much as you want.You are a sane person in a really difficult situation.
Trish

Re: I'm Taking Care of My Mom
 

Merry, you are truly impressive. Don't worry, keep venting here!

Re: I'm Taking Care of My Mom
 

I'm 5000 miles away from home, so I've not been taking care of my parents. But my siblings have been spending time at my parents' apartment. Thought I'd share what I know about taking care of my Mom.

My Mom is turning 88 in a couple of months. She has been treated for Non-Hodgkins Lymphoma is a 13 year survivor. A couple of years ago, she developed congested heart failure. My parents have a live-in housekeeper and my siblings take turns to be with them especially on the housekeeper's day-off (usually on Sundays)

When my Mother's cognitive ability declined due to UTI (or congested heart failure - I can't remember which one), my oldest two brothers were spending time there, but didn't do anything for several days. We still can't figure out the reason why they did not take action. It wasn't until my Oldest Brother-in-law went for a visit that an ambulance was called. Mother's life was saved in the hospital.

I think some men are more 'passive' when it comes to dealing with crisis. At least that's the case in my family. Mother loves to tell the 'old stories' when Father didn't do anything while Oldest Sister (then 19) was fighting pneumonia in the hospital 40+ years ago. The 'miracle' antibiotic cost a fortune and the hospital wouldn't administer the shot until money was paid. Father was dejected and followed 'order' like the good soldier he's always been. Mother went to the doctor's office, pounded the desk and 'ordered' them to give Oldest Sister the shot "this minute!" She'd take care of the payment later.

We are compiling writings to commemorate the 60th anniversary of our family's 'relocation' from mainland China to Taiwan. Oldest Sis has refused to contribute. Memory brings back too much pain ...

Re: I'm Taking Care of My Mom
 

Good for your family though for taking care of your Mom! I would have loved to have sisters or brothers to help out so I could take a break once and awhile. Your Mom sounds like one scrappy, tough lady! But, I guess I'm just a bit scornful of "passive" men. When you're brought up to believe that men are the "hunters" and take care of their families it's hard to put up with a guy who doesn't take charge and control. That means I have to be the one, and you know what they call a strong woman who is in control? A bitch, lol but it's not a word that I'm ashamed of being called. Means I'm one strong, independent woman and after these last 6 months I'm thinking there's not going to be much more in life that I can't deal with. Well, as soon as I stop being so sorrowful because Mom lost her battle with cancer and I'm in a daze of pain and sadness.

Good luck with your Mom, they're precious and a treasure and I thank God that He gave me 55 years with mine...God Bless!!

Re: I'm Taking Care of My Mom
 

Merry,

My mom was diagnosed with Stage IV lung cancer in November of 2010. She has metastesis to the bones, liver, and brain. It is August 2011 and she is under the care of hospice. I am the primary caregiver and I have no siblings. The doctors (three opinions) and hospice nurses have said that she has days to weeks to live. We've made it past the days, and are working on the weeks. The harsh truth of all of this is that no one gets to pick their time, and death comes to all of us eventually. Like your mom, my mom is fiesty, but I have watched her slowly deteriorate from a relatively healthy to severly ill woman in a matter of months. You are doing the right thing by your mom, don't worry. Personally, I feel angry, sad, happy, anxious, reflective, ect... everyday, sometimes all at once. I think it's normal to feel uncertain about your ability. But it is your thoughts getting the better of you. I am so very tired of "waiting for my mom to die", physically, mentally, and emotionally tired. Rationally, I know she will be in a better place and in greater comfort when the time comes, this does not mean that I am wishing the time away. Your mom, like my mom has fought a fight that ultimately cannot be won. Unfortunately the best that can be hoped for is a comfortable, peaceful transistion. I know this is not uplifting, just know that you are not alone. I'm not a person of faith, but I wish whatever your higher power is to grant you strength in you and your mom's journey.

Sincerely,

Rick

Re: I'm Taking Care of My Mom
 

Hello and how is everyone? Well, instead of being "stuck inside a cloud" I'm still stuck in Indiana! Seems my brother is not happy about having to buy me out of our Mother's house, so he's taking as much time as he possibly can to conclude the contract. I'm getting very, very impatient. I've enjoyed spending time with my cousins and Uncles and Aunts, but I wanna go home! This is my favorite time of year in the Midwest with the temps cooling off, and the leaves beginning to change, and local festivals, but I wanna get on the road!
There's entirely too much sorrow and pain in this house and I think I would heal better if I was in my own home. All I do is cry and feel sad being here. I've cleaned up what she wanted, and I need to be done with the pain of seeing her in every place I look. I don't want to be reminded of the time she was sick and fading before my eyes, I want to enjoy the memories of when she was fiesty and scrappy and we had places to go and money to burn at garage sales!
I suppose that sounds like I am coldhearted, but I'm not. I just don't wanna cry anymore. I lost my joy watching my Mom get sick and fade away, and I need to get it back or I won't be able to carry on...

I hope you ladies (and any gentlemen) are doing allright. God bless everyone and keep you strong and safe. Peace and Love, G

Re: I'm Taking Care of My Mom
 

So good to hear from you Merry. I've been wondering how you were doing. I'm not bad. Had flu and chemo reaction so have been out of sorts but am back in town now. Remember you said you didn;t expect to get home till October so I hope you are still on track. No surprise that your brother is dragging his feet about the house but he can't do so for ever. Keep remembering your feisty mom's beauty.
Trish