Joppette Posted June 2, 2011 Share Posted June 2, 2011 Many of us have been in the role of caregiver, whether it is for a person with cancer, or old age or other illnesses. While it can be a blessing to care for a loved one at times, at other times it is just absolutely stressful. There were times when I thought the top of my head was going to blow off in frustration. Other times when I was trying to help, but trying to also hide my grief, knowing my Mom or Dad would be leaving me. And then there was guilt. Guilt that I was not doing enough, not doing the right things, and guilt that they were not getting better. The symptoms of the stress are many, such as: Feeling sad or moody Depression Exhaustion Trouble sleeping, or not sleeping enough Not wanting to get out of bed in the morning Not feeling appreciated by the person your are caring for The list could go on and on............................... You should not feel bad about having these feelings. It is normal. Many doctors diagnose caregivers as the "hidden patients". Aptly put. But if you don't take care of yourself, you may not be able to care for your loved one. Ask for help. Stay close to family and friends. Ask them for help. People like to help, and many times they say "let me know what I can do to help you." But we don't specifically ask for help. It can be simple things that help, such as a run to the store for you. Can you pick up a perscription for me? Would you sit with my loved one for an hour while I take a break? Community services can include meal delivery, transportation, legal or financial counseling and home health care services such as physical therapy or nursing. You can also ask at your church or synagogue for services or volunteers who can help you. If you are reading this, you are already at an on-line support community that can help. We can't physically run to the store, or help in the ways written above, but we can support you, and listen to you and sometimes that can help. Whatever it is, give yourself a break. Your job is very important as a caregiver. Congrats on a job well done. Judy in MI Quote Link to comment Share on other sites More sharing options...
Annette Posted June 2, 2011 Share Posted June 2, 2011 Pure poetry. I reread this post several times. Even realizing that some of my issues, behaviors and thoughts were stress related made me feel good for a moment. Now all I need to do is find avenues that I can take to honestly reduce the stress and still accomplish the things that are necessary to sustain the people that are relying on me. I think that the forthrightness of your post might make some people realize that at some point continuing to allow those in your care to put straws on the camels back will eventually break that back. Thank you Judy for a very thought provoking post. Annette Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 2, 2011 Share Posted June 2, 2011 there is so much info for caretakers and its amazing! i am trying to remember the name of the site I used to recommend. It lets you organize your entire caregiver support system in one place to make life easier! Some people have friends and Family that get involved including transports to appointments and providing lawn care and food items for freezer and housekeeping services that it is sometimes amazing! Thank you for taking the time to address this and starting a dialogue about these issues! Quote Link to comment Share on other sites More sharing options...
Katy66 Posted June 6, 2011 Share Posted June 6, 2011 And isn't it great to have those friends and family who don't say "let me know what I can do" but they just come and they do? Never once did I have to say to my sister and brother in law, I need "this". They just did things they knew I needed and left me to take care of what I needed to focus on. Oh and there were the dear friends that made sure I had few meals to cook in the 19 months of Gene's treatments. Quote Link to comment Share on other sites More sharing options...
eric byrne Posted June 6, 2011 Share Posted June 6, 2011 Thanks Judy, I am sure there are many out there appreciate your comments.Caregivers are really the unsung heroes,the support they provide,often over many years with perhaps little praise,or acknowlegement even,I take my hat off to each and everyone of them,for without this army of selfless people society would grind to a halt. Quote Link to comment Share on other sites More sharing options...
D&TM Posted December 15, 2011 Share Posted December 15, 2011 I am new to this caregiver role. I am already full of guilt and anger. Not toward my mom, who is the patient, but toward my sisters. Your post says that we should actually tell others what we need from them. I am sure it's mostly my paranoia, but I am terrified to leave my mom unattended. I just keep running all the horrible possibilities through my head and I live over 400 miles away. So, I have asked other family memebers to stay with her when I leave to go home to take care of my obligations there. I have a 14 yr old son and a husband who works away from home over night. We have established places for him to go when my husband and I are both away. However, lets face it I do still have obligations as a mother and despite my every effort, cannot find a magic spell to allow me to be in two places at once! My delimia is that when I do ask I get told, " yes, yes" and then they don't follow through as promised. I find out that they have not done as promised and left her there alone. I know none of those horrible things have occured... YET! I just don't know how I could ever forgive myself if she is alone and something does happen. I now find myself feeling like I can't trust the others to stay with her and my mom will not come home with me when I leave her house. She has always been a very independent woman and is having a very difficult time succumbing to the idea that she needs a caregiver. So, when I leave she tells people who are suppose to come- (who by the way are her other daughters or granddaughter) that she is fine alone. I have explained for them to expect her to do this to the others and also let them know why I feel the way I do and have asked them to not give in to her request to be alone. But, they do. Am I wrong to not allow my mom to decide if she wants someone there or am I justified in my fears. My thoughts are, " better safe than sorry". I just can't stay with her constantly. But, find myself feeling that I must be the only one who is going to do this for her! Quote Link to comment Share on other sites More sharing options...
Joppette Posted December 16, 2011 Author Share Posted December 16, 2011 Hi D, I didn't notice this post before responding to your other post. You've asked very valid questions. I have some questions for you to help understand the situation. Is she getting treatment anymore? When my Mom was dx, she took radiation therapy to her brain because she was having seizures, but refused any other treatments such as chemo. When she was done with the radiation, we had the "tough talk" about Hospice. At first she was completely against it because she thought if she accepted it, she was "giving up". When I explained that their job was NOT to help her die, but rather, to help her live well, with good quality of life, she decided to accept their help. This was huge in helping me care for her. Not that they could be there all the time, but knowing I could call them in an emergency was a relief. As you will read in my post to you, I was in a situation where my siblings were not willing to help care for her. My Mom was also very independent. I was very careful in explaining what Hospice would be doing, to help her understand that their help was not accepting death. It was critical for her to understand that, in order to accept their help. I don't know what else to say in writing. If you want to talk, private message me, and I'll give you my phone number. I totally understand your frustration, and anger. It is a tough place to be. I get it. Judy in MI Quote Link to comment Share on other sites More sharing options...
D&TM Posted December 16, 2011 Share Posted December 16, 2011 Thank u for the offer of ur phone #. I have read several of ur posts & replies to others & realize you are a very informative veteran with this cancer ordeal in many aspects. So I do value your opinions. I will send you that private message as soon as I figure out how. Lol! I know that I am now in need of outside input that comes from experience & from an objective view point. It seems easy to see things from my own view point & it's also easy to get lost in my own mindset. I guess that's why I came to this web forum. I just needed some feedback on the things I was feeling. Because, we all need a reality check. I don't feel pity for myself & am not looking for any gold stars for the care I am offering to my mom. I just needed to know from others who have been through this ordeal if I was thinking selfishly or with paranoia. I only want what's best for my mom. Who, yes by the way is still undergoing treatment. The onc has her thinking that she will only have to have 6 chemo treatments & then possibly some maintenance afterwards. I don't have the heart to tell her that if she survives the six that it could be years of her battling this monster. I want her to keep the hope alive, but at the same time I don't want her to be devasted if she finds out the treatments have not been as successful as she had hoped. I'm not sure what to say to her and what not to say. I sometimes find myself thinking, " dummy- you shouldn't have said that. Now she thinks you're planning her demise." Quote Link to comment Share on other sites More sharing options...
Joppette Posted December 17, 2011 Author Share Posted December 17, 2011 D, smiling at the private message comment! If you look at the bottom of my post, you will see to the left 3 little boxes and one of them says PM, which stands for private message. Click on it under my post here, and it will take you to my email here. Then you can write privately to me, and I can respond the same way. Judy Quote Link to comment Share on other sites More sharing options...
D&TM Posted December 18, 2011 Share Posted December 18, 2011 I did figure out the PM deal & sent you one. Not sure if I did it correctly because haven't seen a response from you on it. So, if you didn't get it let me know & I'll try my hand at it again. Quote Link to comment Share on other sites More sharing options...
Joppette Posted December 18, 2011 Author Share Posted December 18, 2011 At the bottom left is PROFILE, PM OR EMAIL. I didn't get your PM. Usually if I get a PM it shows up at the top left of the page, under 'new messages.' I look forward to hearing from you. Quote Link to comment Share on other sites More sharing options...
D&TM Posted December 18, 2011 Share Posted December 18, 2011 Ok I attempted to resend the previous PM. Says it went. Let me know if still not received. Thanx Quote Link to comment Share on other sites More sharing options...
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