I moved my mother into my husband's and my home in November of 2005. She had fell at home and broke her hip. She was not able to live on own any longer anyway. This gave us an excuse to move her into our home. She was a very independent woman before the accident, but things have changed in the last few months.
Her short term memory is not good at all any more. She can not wheel herself around the house any longer.
She just got out of the hospital back in June about a 2 week stay with a blockage in her colon and then she contracted VRE. That is not fun to have in the home. I felt so sorry for her.
I am starting to have crying sessions it seems like every other day anymore. I do not see my mother any longer I see a person declining quickly. I am feeling overwhelmed and I don't think my family sees it. I have told them I need to get away for a few days, but that never seems to happen. No one has time to watch or be with mom except me. I am the only child so this is all on my shoulders. Her brother is not any help they have not spoke in several years now.
I do not know if I am just going through a stage or if I am starting to get depressed. I am with mom almost 24/7 except when a homemaker comes in daily. A person can go to Walmart just so many times to get out of the house. I seem to have lost my friends because I can not get together with them anymore.
This on-line discussion is a life line for me. This way I can communication with people and see how they handle different things that come up in their caregiving also.
So if anyone has advice please let me know how to get myself under control.
Losing Control
It's sad, but many of us lose our "friends" because they don't want to know about our lives and we don't have time for them. I think sometimes they are afraid the same thing could happen to them, so they want to deny the facts.
Please do get some help for your depression and please keep coming back here. At least you know you have people who understand. Breaking the isolation is so important, and caregivers know what you are going through.
Carol
I know how it hurts when people always ask you how Chris is as if you are chopped liver when he use to go to Church with me occasionally everyone would make such a fuss over him and I was the one who make sure he was looking nice after tending to him for hours and barly had time I comb my hair and forget makeup or earings or anything. At least you are able to go out with him-my husband always says something mean or a putdown or argues with me so I will not go out with him and forget him going to pub for a while with him-he would not do it for me.
When I first started working with my client, I was basically thrown into the situation with very little information.I understood they were tired and worn out, so did not contact anyone when certain problems arose.My understanding was my client had Alzheimer's. She does not have Alzheimer's, but does have dementia. I am spending too much time on issues that need to be addressed with the family. For instance, she is on medications that are past their usefullness in her sitation and I can not get the family to listen. I take responibilty that I am not communicating well enough to be heard. Any suggestions? As crazy as my client makes me at times, I still want her to have a quality life. I need some time off, and will take it soon. The family will just have to figure it out. Please let me hear from ya'll as I do need support and suggestions. LindaM
Thank you for your reponse, it really helps when others respond to your pain. I have to have eye surgery today and have to go alone which probably makes me more upset and tonight we are celebrating our grandson's birthday so have to do things when I get home and if the surgery does not fix the problem will need to have cateract surgery and am not sure I will be able to do it on my own and will have to ask for help which I hate to have to do. I have one cat that I love and he knows when I am upset and sticks by me like glue- again thank you dear lady for caring about me, I also have a beer or two when I am depressed which is not good for me either. I hope I can help you also.
195 Austin "I have been so down in the dumps lately-the husband only cam home the hospital on Sun and it strated before then-I did get him 3 more days in the hosp by calling medicare so now his wounds are healed for now. I am so sick of him being so dependent on me and not wanting to even dress himself I can't imagine do this for many more years he is only 71- I do not want to get out of bed in the morming. I am having eye surgery on Fri and of course have to go alone. I am able to get done what needs to be done but want to run away from home and should not complain you all have it mush worse than me."
I can relate totally! I am alone in this... last night I did call some California family members - who rarely call & they actually asked this time "How are YOU?" Usually, it's how's Chris... with no mention of me. I really think they sort of are amazed I have taken care of my birth father for 6 years & have not gone completely bonkers... but, I do have negative vices that I am determined to quit - I know it's a very negative way to calm myself down - cigarettes & wine... I'm not a everyday drinker or anything... but, after a week... I get so pent up, I either go out with Chris... (who loves beer & cigarettes, but, should NOT be doing either) & have a few & then a few more at home. I know it sounds terrible... but, being all alone... is tough... I have 10 cats & the dog... they actually are pretty easy to care for! In any case, I'm trying to get back to exercise, proactive communication with people who are sympathetic. You have to take care of yourself 1st... and today I made that my Number 1 cause. I sat Chris down & explained... no more cigarettes or alcohol except maybe one at a nice dinner once in a while. I told him he needed to get up out of bed everyday (he'll lay there all day & mope if we don't go out... and he is able to do things still... it drives me nuts! - and I start feeling guilty about him laying there, and decide to go out where there is real life! (Generally down the road at Johnny's - a pub)... But, my health is suffering from giving in to my stress & his give up & die in bed attitude. I don't now if any of this makes sense. But, I am starting to put up boundaries or I will die young... I intend to live long and healthier from now on... and do the best I can!
This could be her dementia or it could be caused by medication. Only a doctor can figure that out. I know how frustrating this is, but your neighbor was right on with his answer. Arguing won't help. Hopefully, some medication or a change in what she takes can help, but sometimes it doesn't and you have to figure out how to live with it and cope. My heart goes out to you, as this is one of several of the hardest things to deal with.
Carol
Thank you ALL for the positive feedback & comments. One day at a time.
Mom needed new sneakers - I found "new balance" sneaker store & took mom last night. I bought her cool black sneakers with orthodic inserts. She is good to go for her knee replacement surgery this Friday! God, please help me put my past to rest. So I can be a good and happy person all around. Thanks xo Sandi
Carol
Jill
Brenda, glad to hear your Mom is doing so well. If she keeps this up, you won't be able to keep up with her!
Sandi, welcome to the site. I agree with you and Cat and the others, it is a real life line for me. It has amazed me to read what other caregivers say, that it is almost word for word the same problems and concerns that I have! I'm so glad to be a member here and have such support, and I would even say friends, even though we are probably from all different parts of the country. And I have to tell you that what you wrote about your faith, and also about being the best daughter you can be for your Mom, really hit home with me. I also depend very much on my faith, including sometimes wishing God would hurry up (of course I know, all things in His time), and I occasionally need a nudge out of 'poor me' and back into the real world, which is that my Mom needs me and I better stop with the pity party.
Thanks for being that reminder for me.
Carol, as Cat said, we're so lucky to have you with your experience and wisdom and knowledge and caring. I don't know what your current situation is, as far as whether you are still a caregiver, but anyone who you care for is surely in good hands. Thanks for everything you do as our 'fearless leader'!
Cat, the visitor this weekend was the man I told you about earlier who wants to marry me. I think I have realized and accepted that we have the best relationship as it is, very good friends forever. We had a wonderful visit, and I think we will keep it that way. Also, a friend told me that she has someone who she wants me to meet, and after giving it some thought, I have realized that it would be nearly impossible to have someone in my life right now. Besides the obvious, which is that we would have to be in love, it would have to be someone with no other ties, and nothing else for me to be responsible for, but also someone who could blend in with my life and join in. There really isn't any room for change in any direction the way it stands now, with my Mom as my main concern and all decisions made around her. But I think that's ok, in fact I have felt strongly since she had to move in with me last year that this is exactly what I'm supposed to be doing now, and in spite of my (too numerous) complaints, I really don't want things to be any other way. I want her with me, and I want to give her the best life possible for as long as possible. And as much as it sounds good to think of having a partner in that endeavour, I really believe it's a job for me alone. I would appreciate your thoughts on that, and those of the others in our group.
I was lucky to have a long weekend, my doc went out of town to a conference and I usually take off work when he does, it's just easier that way. Tomorrow I'm off too, but my hospital requires each nurse to do a certain amount of community service time each year, and I do mine giving flu shots. So that's where I'll be tomorrow. Then do a few errands in that part of town while I'm over that way.
Guess I've blabbed long enough, but at least I'm not complaining like usual! Though I know this group is supportive, thank Goodness. I'm glad that I've had a few days to rest, spend time with my friend, go to church, read, watch some baseball with Mom. And I'm glad that I can always come here, to share the bad and the good times.
Thanks to everyone for caring, and hope everyone is doing as well as possible. Cat and Carol, if you're inclined, I'd appreciate your thoughts.
Jill
I was the primary caregiver for both of my in-laws. It's often the case, especially if there are mostly sons.
Take care, marmmy.
Carol
I just found this place a few minutes ago and looking for help also.
Carol
All I can say is I give thanks everyday that with all of the life challenges you have juggled, and continue to juggle; you created and continue to moderate this site. Offering us this safe forum is *so huge* I cannot put into words how much it helps me thoughout the days.
To Austin, Sandi, Roxie and all the rest - I read your posts and feel connected in a way that is very special. We are all better, smarter, stronger, kinder, more resilient and happier because we have eachother and this forum. I am sending a virtual hug to all of you!
Thanks for letting me be part of the group :-)
The "only" way I get through my life is with the Lord. I don't totally understand faith, because I want it done now, I do know that God understands each of our situations and He IS working behind the scenes. Like last week, by a fluke, I met a gal that works at my same company, we have so much in common and she lives in the next neighborhood. My electric lawn mower batter wasn't charging and guess what - she has the same lawn mower & she let me borrow her battery. She invited me over Thanksgiving to go to a weekend spa - room and board paid - just pay for any "special massages, etc" I want! THAT is what gives me chills - little tiny miracles -- us finding each other through this internet. Able to support each other and hold each other up. xo xo Sandi
It was good to see your post-I missed your input and are very sorry you are having so much trouble get the testing device for your Mon and good for you for fighting for it it is horrible what the insurance companies are allowed to get away with and it is great you were able to educate us about this machine. My problems are small compared with you and the others- I wish spouse caregivers were on this site but I am able to pray for you all and maybe be of some encourgement and comfort at times, take care
The problem, as your say, is that we (even you, and you know how to jump the hoops) get so worn down from fighting. Our health care system is a total mess. I've written about it as a mother of a son with many health issues, as well as the caregiver to seven elders. It's mindboggling.
Keep up the good fight and know we are thinking of you and look up to you for your courage and strength. I sometimes get tired of hearing how "strong" I am, as if nothing bothers me and I don't get tired. I'm sure it's the same for you. Yet we need to soldier on.
I talk with people in Congress about health care issues, and it's not like they don't know that our system is broken. Many businesses that are benefiting from the system pretend to care, but are just plain greedy. It's very frustrating, to say the least. It makes me angry, and I don't get angry about many things.
The best we can do now is get out and vote for the candidates we think will help our health care system the most, and help our elders the most - and our disabled.
Keep the faith, Cat, and please continue to lend your wisdom and experience to all of us.
Carol
You have no idea how much your compliment meant to me - I'm a little teary because usuallly when I post I dont see feeback from anyone.
I am back to vent again about an approved medical supplier that mad me incredibly angry and sad and frustrated.
I have worked since April to get my mother an authorization for a home testing device for PT/INR (people on blood thinners like coumadin need to test - just like diabetics need to test for blood sugar). CMA finally approved home testing devices be covered for patients with heart conditions like A-Fib. Boy was I excited!
I pursued this because each time my mother needs to be tested it involves a 1/2 day trip to the doctors office to basically have a fingerstick test and the wait for results. It is wearing on her and affects my worklife - - another burden that caregivers have to bear. I got her doctor to write up a prescription, found a vendor that would take my mom's Medicare HMO and got an authorization from the IPA....when the sent back the authorization, the IPA specified another vendor that was contracted with Blue Shield of CA. Great! I contacted them and had to go through another round of paper work and another prescription, but it looked like all I had to do was wait for the device to arrive and schedule an appointment for training -
Surprise. The vendor, Tapestry Medical said that my mother was "not covered" - but they would as a *super special courtesy* give me a discount for *CASH* payment - when I called and spoke to a supervisor, she told me after alot of hemming and hawing that the real reason was even though they are the contracted with Blue SHield of CA - they did not take the 65+ Medicare HMO because Tapestry Medical could not *BALANCE BILL* the patient to make up the cost difference from their contracted price with Blue Shield.
I have given them until Monday to get back to me, as I know how to fight this type of thing, but it still gets to me in private. 7 months and still waiting because the of the vendor. The only reason my mother will get this testing device is that I am willing to fight until it happens. But many seniors and sometimes even their family members who dont' have someone who knows the system and is willing to contest what they are told will either pay or go away - something has to be changed in this system.
It seems to me that if all of us caregivers put our foot down as a group we could stop some of these practices. I am so tired some days - what have allowed to happen with our healthcare system?
Thanks so much for your thoughts. I think there needs to be a balance between feeling safe to truly vent without judgement, so people can get out some frustration, but I also agree that we have to be able to find our boundaries and then move on toward making it work for everyone involve, to the best of our ability. Sometimes that means getting outside perspective from a professional in healthcare, a spiritual advisor, or a trusted friend who can see the whole picture. I hope you continue to be an active part of this forum, lending your wisdom and spirit to help others.
Carol
You sound so upbeat - glad things are getting better for you, and your mom.
Nothing you say is ever boring - even if it is just taxes - - - you have a way with words.
I did want to share a story about a recent outing - my mom was entranced by a PBS tv show about a new stage production "Walking with the Dinosaurs". As luck would have it, there was a night that the show was sponsored by USC and Conquest Fund - an NPO for dementia / cognitively impaired people & their caregivers, so I went ahead & bought tickets - when we got there, my mom was treated like a VIP - not only were the seats great, but there were others just like us in the handicapped section. Seeing so many of us caregivers with our family members at a large event was so nice - and my mom enjoyed the show as well as getting a big kick out of the whole event. It made a world of difference for me too - going out to a mainstream venue without any worries about handicap access, or people's attitudes. A mini-vacation!
hope everyone is well
Roxie, I guess you're enjoying your daughter and son-in-law staying with you. Look at it this way, you'll be able to go visit in Hawaii next year!
Brenda, how are things on your homefront? I know, BOWELS, etc! Same here :-) Glad to hear your Mom continues to improve in her mobility. Are you able to take her on outings? And have you made good on your threat to give her a 'time out' in a nursing home if she doesn't be nicer? We all feel that way sometimes!
Cat, thanks again for the positive encouragement, and good information, about my BORING IRS stuff. So I'll try not to say another word about it until I hear back from the Tax Advocate, and then I'll update you. Until then, hope you and Mom are doing well and continuing to enjoy your outings. You'll see above that Mom and I had one last weekend and both really enjoyed it. I hope she continues to feel well, that will mean more opportunities for us. She even enjoys going around the block in her wheelchair with the caregiver while I'm at work if the weather is nice.
Carol, great advice and encouragement from you as always. Thanks for being here!
Welcome to our newcomers, I hope and believe you will find this a wonderful place to vent as well as get information and encouragement. We are all where you are, and everything you are feeling is normal. It's ok to get mad and tired and frustrated, and then the guilt that follows is also ok. If you will follow the advice that has been posted here regarding who to contact for some type of assistance, whether nursing home, respite care, whatever, you will be on the right track to begin navigating the maze that is Elder Care in this country. Just know that the wheels grind VERY slowly, and don't give up. You are the advocate for the person you are caring for, you are their voice, and if you think things are bad now, imagine if you weren't there at all. You will learn how and where to look for whatever help is needed, both for them and for yourself. And that's important, not to neglect yourself either physically or emotionally. Realize that you can't help them if you can't help yourself. Just jump in, keep at it, pray alot, and keep coming here. We're all here for each other. Right, gang?
Hope to hear from you guys soon!
Jill