Taking care of me


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My mom's stroke was a little over 3 years ago. She was left needing 24 hour care. Throughout this "journey" I have struggled with managing all that my life demands of me.

Being a caregiver takes so much. I really truly think that no-one could understand how hard it is if you haven't done it. Then there are different degrees of care that individuals require. My mom in particular is unable to do anything for herself. She has grown very dependent on me. I am her safety blanket. There is so much guilt involved and she learned fast how to play me. For a long time (and being honest sometimes) it still works. Which I guess is my fault for letting it happen. ya know I love her so much and I fell so bad for her. She lost so much. I want to give her whatever I can to make her happy.

There are the days though that I get mad and lately it has been happening more often. She says things that make me so mad. Like you would be happy to get rid of me, or I am a bother to you. I am so sick of telling her how much I love her and I am happy to take care of her. I tell her she just needs to give me a break. Last sunday I helped out my chiropractor with a health fair and before I left I got I don't want you to go, I will miss you. All over me leaving for a few hours. I used to let that get to me and I would feel guilty but now it makes me mad. She gets hurt when we do things that she can't and then that makes me feel guilty cause she can't. I wish she could. I would give anything to make it happen. I ask her don't you want me to live, to have a life? I tell her in many ways my life stopped when hers did. I have sacraficed alot and sometimes I don't think she can see past her own pain and see mine. Is that selfish of me to say? I have so many mixed feelings on this.

I have taken a stand. One day when we were not getting along so well I kinda snapped on her. I feel I have given her so much and put my self and husband last. It was a day that she was depressed and kept saying stuff about me not wanting her and I had just had enough. I made the decision to move back to my room. We have slept on the pullout couch for over 3 years. She was/is afraid to sleep by herself. I bought a monitor and that night we went to our room. She cried on and off for about (honest to God) 3 hours. I finally snapped and yelled at her like mom just stop, I can't take it anymore. It was like your kid throwing a 3 hour fit. ENOUGH ENOUGH!!! It took all I had to stick to my guns and I didn't even tell my husband until he went to pull out the bed incase I chickened out. I followed through with it and she was fine and it felt so good to sleep in my own bed. I love it. She still doesn't like it but has adjusted to it. I knew it was just going to take me doing it for it to work. I have approached her on it many times over the years and she never agreed to it. So it has been about 3 weeks and I even stopped getting up at night and turning her. She has the pressure relief mattress and she wakes me if she needs me. She tries to tell on me to my brothers or my dad really anyone that will listen and they all just say it's about time.

You want to know the sad thing is when I take care of me I feel selfish. I started seeing a chiropractor and he said someone needs to take care of you. He is trying accupuncture on me to try and help with my fatigue and stress. It felt so good to hear someone wanted to take care of me. I think I am desperate. I almost cried when he said it. It was like hey someone gets how exhaugsted I am. I told him I just want to feel alive again. Feel motivated again. I think I have run myself down so much that I can't get it back on my own. Shouldn't I be used to this after so long? Does this ever get any easier?

I want to be her caretaker and able to have a life too. I want to be a good mom and wife. It is hard to make everyone happy. I know this is going to make me sound completely crazy, but I want to have a baby. I don't want my son to be a only child. I have 3 brothers and 1 sister and even though they drive me crazy I couldn't imagine my life w/o them. My mom is totally against me having a baby. She already had 12 grandkids. She is also worried about me being able to care for her with being pregnant and then after the baby I think she is worried I wouldn't have time. When my mom had her stroke my son was only a year and a half and there was no way I could handle another child plus we ended up taking in my twin 5 year old neices for 2 years. They are home now (thank God)! I just feel it is now or never. I turned 30 in Oct. and time is ticking. My son is already 5. I feel like I have given alot already and I don't want time to run out and regrett not having another child. I worry if I can physically handle it all. So am I crazy or what?

 

Let me know if you have any thoughts on this

Ruth

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Ruth, I really admire you. You are undoubtedly one of the most devoted people that I know. You have a difficult rope to tow. I would like to say it will get easier but honestly, I don't know that you can break the habits you have created with your mom. In defense of your mom, though, I know what it's like to be completely physically dependent on one person. It is extremely frightening to be left alone, especially when they tell you they will be gone for a certain time and then they are an hour late. It is a very bad psychological dilemna to be so dependent on someone else. Seriously, I wonder if your mom has problems with high anxiety. Do you think it would help to talk with a psychologist?

 

BTW, how do you communicate with your mom?

 

You are a trooper! :)

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i admire you and wish i could wave a magic wand and help, but i don't honestly know what to tell you. i agree you need more time for yourself, but have no idea where it will come from. :forgive_me?:

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Ruth,

 

What a difficult situation! I am a part-time caregiver and I have some sense of how difficult it can be but I could not do what you have been doing. I admire you immensely :cheer: but I also think you do need to take some part of your life back so that you can avoid burning out and/or resenting your mother. Your mother needs someone to tkae care of her 24/7. She also needs you to love her and to worry about her and to let her know that she matters. The critical question is can you continue to love her and worry about her and support her-- if you also have to be a 24/7 caregiver with no life of your own? :uhm: It sounds like the answer to that is probably no, so you need to find a way to take care of her but have a little more of your own life.

 

Another child may be something you need to do for you and your family but that is a huge step and will understandably scare everybody to death. :yikes: Maybe before making that decision, you could consider baby-steps to give you and your Mom a little independance. Is there any way you can have a scheduled care-giver for 2-3 hours a day? There are nursing aide students that might not be too expensive or maybe another family member can be coerced into stepping up to the plate. :bop:

 

My mother is in the same situation and I know that I would not be capable of being supportive without time away. (I also have a full time + job that I need for financial reasons!!!!). We knew that the only way my mother could come home from a nursing home was with a live in aide. She agreed but it was very frightening for her to lose the constant support of her kids, to have to deal with someone who didn't know her or her schedule, and there was a steep learning curve for the aide. She is also dependant-- and she was very dependant on her children. When I was there (one of us is there about 5 hours every day to give the aide time off- and full-time when the aide takes a week-end or holiday off) she would beg me not to leave and come up with every excuse in the book to get me to stay. She would say that nobody else could put her to bed without hurting her, that she couldn't eat if somebody else cooked, that nobody else could get her in the shower without hurting her, that she was scared and did not know why. She would cry or worse just sit there totally scared. :(

 

I would be stoic when I walked out and cry for the next two hours. I would call my sister from the driveway and ask if we were doing the right thing. She would talk me out of going back inside- telling me that the only way this could work is if we could leave her with the aide. My sister would call me crying when she left.

 

Mom has now been home about seven months. She would still prefer that it was all us, all of the time. BUT she is now more comfortable with the aide. The aide cannot give her a shower but can put her to bed. The aide can help stretch her but not give her physical therapy.... The aide can make her breakfast and lunch ( but not dinner) and keep her company during the day. She doesn't cry when we leave or call us up and beg us to come back any more. She is not as happy as if we were there full time-- but she is not unhappy. We are still sometimes resentful or frustrated but have some time away so that we can love her and enjoy time with her and not consistently see it as a burden.

 

In addition, making her (and it WAS making her) understand that if we had to be there all of the time we would be unhappy and financially ruined-- allowed her to be our Mom again. It allowed her the opportunity to think about what she could do to help take care of us. This did not happen right away. Her very strong fears and her depression made it impossible for her to think about how this was impacting us at first. But a few months ago when I left her and said I was going to a movie with a friend, she said "good for you, you look like you need to go do something for yourself". She also talked to me about changing the schedule so that my sister could have a weekend away-- saying that she thought my sister was burning out and was worried about her. That was huge. She has more confidence. She knows she can handle some things without us, she can calm herself down, she can communicate her needs to the aide, she has a schedule she figured out to keep herself occupied during the the time we are not there. It is not as full a life as I hope she can develop-- but it is a little better. :D

 

The term I always use in talking about handling all of the stroke caregiver issues, is "balance". I need to understand and respect and empathize with her emotions and her needs-- but balance them against my needs and my abilities. Right now, it sounds like the relationship with your mother is out of balance which hurts both of you. There is no easy way to change that balance but I hope you can come up with the a plan acheive a little more balance, and the strength to carry out your plan. Good luck and keep posting! :hug:

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My dad and mom divorced about 12 years ago. They were married for 31 years before they divorced. He does as much as he can and I am so thankful for what he does do. He visits her almost every day and takes us to appointments if I need him to. He will even sit with her for short periods of time when I need him to. He has helped financially and he is very supportive. I don't think most ex husbands would do what he does. He just isn't real good with her meds or feedings or changing her. If she chokes a little he freaks out. He doesn't have the best of health either.

I have 3 brothers and 1 sister with whom are all content with letting me do it all. Whatever as long it doesn't affect them. I am the youngest and they have all lives thier lives. My youngest brother is the only one who I know I can call and he will come without giving me attitude. They do all take a weekend which is fri night to sunday morning. I do get a break, but by the time some of them show up on Fri I am ready to go to bed. I love my saturdays. You don't know what a luxury it is to just pick up and go if you want to. Sometimes we have stayed at my dads house just to get out of the house and have a real break. I tell him it is like a vacation.

I know that I am part of the problem. I get in trouble for that. I am just to giving. My brothers all look up to me and I do alot for them. Especially since mom's stroke I kinda took her role. I have a problem saying no.

You are so right when you talk about balance. It is really hard to find. I think I am moving in the right direction in small moves. You don't know how big of a deal it was to move to my room again. I can sometimes feel the resentment sneaking in and then feel guilty about it. I don't think of her as a burden. I feel sorry for her.

For Mekelly how disabled is your mom? We brought in a friend of the family that helps out occassionaly. Mom threw a huge fit when we did it initially but then she learned to like her. Now she enjoys the company. Sandy loves to gossip and keeps mom up to date. We pay Sandy to come out once a week for about 3 hours so me and my family can go out to eat and usually get grocceries. It was hard for me to trust someone else with her as well.

I guess I need to get over my guilt with her. Why does it get to me so much more than the others? I need to learn to put myself first. easier said than done. I wish I just had it in me to be like this is what I need and I am sorry if it hurts you or upsets you. I am just not that person.

Thanks to all that posted and for all of the support. I know I have talked about this before but, sometimes it just helps to get it off your chest.

 

Ruth

 

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Ruth,

 

Bless your heart for all that you do. Granted, I'm a survivor, but I do feel for you. I'm glad you do get some consistent type assistance from your Dad and the caregiver you bring in. Thankfully, I am somewhat independent as my daughter is 15 and obviously in school as well as a teenager needing her time away from me outside of just going to school.

 

Initially post stroke, I would give her a hard time when she wanted to go somewhere. Bless her, she enforced some tough love which ultimately benefited both of us as I discovered I COULD be on my own so she could enjoy time with her friends and other family members.

 

As to your other siblings, I'd call a family meeting and insist they do their part themselves either by being there physically or financially to help out with expenses.

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ruth, you have alot on your plate. you are an angel here on earth for your mom, god bless you for all that you do, your caring nature is a good quality to have, so don't feel guilty about anything. keep taking the little steps to improve your situation and it will get better in time. caring for an invalid is hard work, that you didn't ask for. we do what we must to help our loved ones at any given time,and you are doing a good job but you are starting to burn out. i send you (((hugs))), i'm sure you could use more than just hugs, we do understand and are here for you. i will keep you and your family in my prayers.

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Ruth,

 

I know the feeling. Sometimes it is easier to do it all yourself. There is no guilt, and you know it gets done the way she (and you) wants it. The problem is that doing that all of the time only works if you can do it all of the time. Which is hard. Sounds like you have some resources available and just need to try to take baby steps in terms of figuring out how and when to use them.

 

As to how disabled my Mom is-- she had lost the use of her right arm in 1994 due to cancer surgery and taught herself to do everything left handed. So of course the stroke (this past April) affected the left side! When she first had the stroke she had no use of her left arm or hand and since she had already lost the use of the right-- she had no ability to do anything. She could not scratch an itch or feed herself. She could not use a bell or call bell to summon help. She used to be terrified that she would get smothered by the bedclothes in the nursing home because she couldn't move a pillow off her face if it fell on her. She could not turn the tv on or and off even with a remote. She could not blow her own nose. Her voice was almost non-existent because of paralysis of the vocal cords so she couldn't call for help. Her left leg and side were completely paralyzed. She could not hold her head upright at all or sit up. They had to move her in the sling. She was considered a two person maximum assist for everything. She was also pretty confused, could not read, tell time or do any math.

 

She was pretty weak because of health issues in the six months before the stroke. She had serious leg ulcers that wouldn't heal, leading to femoral artery bypass surgery, hospitalization and a series of TIA's leading to the discovery that she needed carotid bypass surgery-- to avoid a major stroke. The stroke was the result of the carotid artery surgery to keep her from having a stroke. Ironic, huh? So the first few months after the stroke were spent building up her strength and dealing with the depression when she realized what her life was going to be like. She had lived alone since my Dad passed away 6 years ago, was still young (65) and had previously been independant depite the health issues.

 

She is now 10 months post-stroke. She has good use of her left hand and a some of the arm. Nothing overhead but we are working on that with electro-stimulation every day. Because she has the use of her left hand and some of the arm she can feed herself and brush her own hair and teeth. She can put on her own makeup and blow dry her own hair. She can turn the tv on and off. She can help dress herself and wash herself but cannot do it by herself. We put out her medication but she can take it herself.

 

Her left leg is still pretty pretty useless. She can feel it but cannot move anything below the hip. If we stand her up she can walk a few steps with an AFO and a hemi walker but she can't get up herself- and we have to help her with balance. She cannot stand or transfer without help. She cannot roll over or sit up without help. She also cannot move herself in the wheelchair very well because she has has only one sort-of- good arm. We have a power wheelchair but it is very uncomforatable and she doesn't use it much- so she pretty much has to stay in whatever position you put her. Everyone says she will never be a "functional" walker-- but she is determined to try. Until December she was having physical therapy three times a week so she could work on that. She was cut off in December and we have tried to keep it up at home with limited success. I am trying to get her started again - now that we have a new Medicaid year.

 

She has difficulty reading as she misses the end of the line unless she follows along with her finger ( a little bit of vision neglect) -- which gets tiring. . Currently she says reading is too hard to enjoy. Mentally she is good. She can talk and think. She seems to be able to tell time (but she may be faking me out on this) She still can't really do math too well ( but I can't either so maybe its a genetic defect and not the stroke!!!)

 

She plays games on the laptop computer we got her for her birthday, talks on the phone, and watches a lot of TV. She sometimes listens to books on tape and she likes to visit with her three daugters, two grandsons and her two sisters. She is following the election very closely which is good sign - since she was always a CNN junkie. She cannot cook but she plans the meals we cook for her. Since I am a terrible cook, she sits in the kitchen when I cook and tells me what I am doing wrong. She doesn't like to go out much and is not comfortable in large goups - but we were able to take her out to relatives for Thanksgiving, and Christmas, and she has gone to see her father who is a nursing home a few times. She struggles with the depression-- but don't we all!!!

 

We are hoping she will improve but I also know that the problems that caused the stroke are still out there. She has a very, very bad circulatory system due to placque from high cholesterol, and radiation and scar tissue from the lung cancer. She also has chronic obstructive pulmonary disease, dangerously low blood pressure and has had heart valve replacement. In 1994 the doctor told her that he could save her life from lung cancer but that the things they needed to do- surgery, high dose radiation... would start to kill her. He said he could buy her five years and after that it was a crap shoot. In April it will be 14 years since he said that so she is doing okay rolling the dice.

 

Anyway- more than you wanted to know but that's the story. How about Your Mom?

 

Hang in there.

 

Mary

 

 

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Ruth,

 

I wish you the best in your care giving for your mom but like you say take time for you and with a baby it will be for the three of you at that time.

 

BTW, I do hope you had a chance to watch a few games toward the end of the football season without your team being in there. I missed your comments in the bunch but I understand your hands were full and time was limited.

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Dear Ruth,

 

Being from the UK there are many things i take for granted. I spent a long time in hospital and rehab and like the three wise monkeys watched a lot of things go on. It is clear you need a break, the length depends on you and your mum. Respite care is a wonderful thing, it gives you a chance to recharge your batteries and for your mum to see residential care without it being permenant. You never know she may like it. One thing is clear you cannot carry on as you are or you will crack up and then the choice will be taken out of your hand.

 

Take care,

Mike

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Ruth,

It sounds like you are carrying an awful lot! It sounds like you have been a very caring daughter for a very long time. It is time for you to start including you in that care though. It sounds like you have started.

 

I read a book a while back that discussed boundaries. Defining boundaries helps us to know what is and is not our responsibility. One of the big issuse that I have been working on is that I am not responsible for the feelings of other people. I want everyone around me to be happy and take it as my fault if they are not. When it comes down to it, we cannot make someone feel happy - that person has to make that happen for his or herself.

 

On the flip side - we are responsible for our own feelings. We have the choice whether or not to be happy or unhappy. If we decide to be unhappy unless everyone else is happy that is our choice. It is empowering to realize that we do have a choice.

 

I see a lot of feelings you are expressing: guilt, fault, feel bad, mad, sick, selfish, mixed feelings, anger, sad, desperate, worry...and love. It sounds like you are so busy worrying about other people feelings that you are neglecting your own. Obviously you have given so much to your mother and family so you certainly are not guilty or selfish.

 

Your mother has learned how to use your feelings against you to get what she wants. This is understandable expecially in her circumstances. It is up to you though, to decide if you will continue to be manipulated this way. You are responsible for caring for her but you do not need to feel bad about it.

 

All this is nice in theory and a bit hard to implement. I struggle with it daily and you can tell by my posts that I often am not successful (so I guess I better email a copy of this to myself huh?!) Sooo.. I am reading yet another book on the battle which goes on in my mind. I again am making that effort to be positive. This week I found myself feeling blue again and decided to work on being happy. I wrote a list of all the songs I know that are about being happy. Then I sang them! Of course anyone who would have heard me singing "If your happy and you know it clap your hands" may have wondered about me!! But even that realization made me laugh at myself and my outlook changed.

 

You have the right and RESPONSIBILITY to take care of yourself. You cannot change the fact that your mother needs your care but you can change how you feel about it. You have all ready had one success in this area. Instead of being controlled by fear and guilt you made a choice to make a positive move back into your bedroom and the benefits have been positive for everyone.

 

Ruth

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