Jump to content
Sign in to follow this  
Islandchic

Hello from a Newbie to this site

Recommended Posts

Hello All!

 

This website was recommended to me and I just wanted to say Hello and see what information is on here. I am not a new caregiver, just a very tired and burnt out one.

Eight years ago, my Mom went to bed and woke up totally blind. She had a stroke in her temporal lobe and it knocked out both optic nerves. She is now 83, has lived with me for the past eight years and I am a full time caregiver to her. The last time I had 24 hours off in a row was a night in January of this year. I had to give up my job at the university, lost my retirement and stay home full time. She was never able to adapt to her blindness and needs constant assistance. She refused to learn braille, she does not get herself a drink of water. She has the physical ability to do these things, she just refuses to. She tells us that she died the day she lost her sight and basically has sat for eight years, waiting to die. I have tried to get her professional help, she told the counslor that she did not want or need that. Her only health problem is the fact that she has become so sedentary that we are dealing with leg and feet issues.

And.....I had stopped smoking 6 months before she became ill, while she was so ill, I began smoking again. I have recently finally been able to stop smoking again, in fact, it was thru support on a stop smoking website that I was given info regarding this site. For eight years I convinced myself tha it was either cigarettes or Valium for me to help cope with the stress of my life, and I had chosen cigarettes! So, now, as a non smoker, I am finding that it was a crutch for me and it seems like my stresses are getting out of control.

I know that there are many people worse off than we are, but it is so hard. It has been a huge emotional burden, not to mention a financial burden. It is severely affecting my marriage of 38 years, it has affected my relationship with my children; I have very few friends left anymore, they are tired of calling me to go do things and me not being able to just pick up and go.

I have one sibling, but he lives 1500 miles away and she does not want to go there even for a vist.

I guess there is not much else to add, except that it is always good to know there are others that have "been there, done that". I try my best to maintain a positive attitude, but I am just so tired. Any suggestions as to how to ever feel rested again?

Thanks for listening...and Happy Friday to all.

Share this post


Link to post
Share on other sites
Guest bessy

:happydance: soglad you found this site island chic youare such an inserperation to me sorry tohear bout your momyouhave given upsp very very much to stickny her againi want to :welcome: youtothid great site whereyoucan join inour chats andtalk along with otherssopop into a :chat: some timesoon after noon or evening s :chat: catch up soonhope fullycare giversarevery very rare breed

 

 

BESSY :big_grin:

Share this post


Link to post
Share on other sites

Islandchic,

 

Welcome Welcome. I'm a survivor, but I wanted to pop in and welcome you as well as encourage you to take that time to do things for you. Have you ever checked on her going to a senior center during the day to socialize with others. A few years back, when I was getting a flu shot, they were being given at the local senior center - I was amazed at all they had going on for the seniors - quite a happening place from what I saw - made me envious and wishing I was 20+ years older.

 

Your a good daughter to be doing what you are doing for your Mom, but you're walking straight into burn-out. Hope you can visit the site often and receive some suggestions from our caregivers - we've got a terrific bunch here.

 

 

 

 

 

-

Share this post


Link to post
Share on other sites

Hi Islandchic. Happy to see you found your way over here. I am a survivor, but we have wonderful caregivers loads of information and support here.

 

Is there a nursing home you could put your mom in just for a weekend , so you and your husband can have some alone time? Having a home aid come in for a couple hours twice a week, so you can get out and get your hair done. Or just do SOMETHING for yourself. If you belong to a church or group someon may volunteer or know some one who would sit and look after your mom for short periods.

 

Like little ones.. when you leave the first few times she may put up a fuss... but as she gets to know the person staying with her, she will make a new friendship and a little trust in someone else.

 

If she is still mentally able to understand, you may have to tell her mom. I need a few hours to myslef... If I don't care of myslef I wont be able to take care of you.

 

Best wishes and I know the caregivers here will jump in and welcome you ..

 

We have live chat every day of the week from 3 to 4 pm EST and nights 8 to 9 PM caregiver chats are on Tuesday and our host is from Australia.

Everyone is welcome to all chats.

 

To access chat click on community links and click on the 2nd live chat... there is a chat tutorial at the top of the newbie sections also or just holler someone will help you.

 

 

Share this post


Link to post
Share on other sites

hi islandchic, welcome to a great place with others like yourself. who do understand and care. we all have been affected by stroke one way or another. i agree with the others, you have to make and take time for yourself somehow. caregivers are truly angels here on earth. i know others will respond to you. if your mom is on the state medicaid program, they usually will pay for respite care. if not you should check into getting her on the program, they also will pay for home health. have you checked into a program for the blind, they might be able to help you too. i think the lions club helps the blind in most states. do try to join us in chat sometime to meet others like yourself and to have fun for awhile. i hope you can find a solution soon to help you out. good luck and god bless for all you do for your mom.

Share this post


Link to post
Share on other sites

aloha and welcome islandchic,

 

there comes a time when you have to take your life back and take care of the things that truly matter. perhaps moving your mother to the right senior center is the best thing for her. speak to her doctor about your concerns. even though making a transition will be difficult, it's a necessary one for all concerned. you have done more than expected. now it's your turn. good luck to you and take care of yourself!

Share this post


Link to post
Share on other sites

Hi Islandchic I'm Sue, host of the Tuesday night caregiver chats. I look after my husband Ray and have done so for the last coming up nine years. I know that always tired feeling of the long term caregiver.

 

I too had my parents here for a while, Dad with prostate cancer for only four months before he died and Mum for 2 1/2 years with mid-stage Alzheimers. Then Ray had another stroke and I could no longer take care of both of them. It was hard looking after three people and is easy by comparison to just look after one. My husband has had five strokes, some TIAs and a siezure and now has vascular dementia so it is harder to get him to co-operate than it used to be. But I say every day: so far, so good.

 

I guess right from the first I stated to Ray and all who support him what my terms were for looking after him. Right from the start that included some "me" time. Initially I could leave here when he was asleep to go for a walk etc but now he has falls sometimes on waking so I can no longer do that. He has always gone to Daycare on Mondays and he now has a shower nurse twice a week and a three hour minder on Fridays.

 

It is better to give yourself some breaks and in your case some couples time for you and your husband. There have been some hard times in our lives but somehow we have overcome them. Like you have found our friends have dropped away but we have new ones who understand our position now. Of course Ray is able to go out as long as I am along to push him in his wheelchair so that is different to your situation.

 

I agree with some of the suggestions: find some minders, if your mum throws a hissy fit say: "Sorry dearest, this is to save my sanity. It's got to be that way now." And walk away, just as you did from small children being demanding. She has rights but so do you. Explain to hubby that you can still go out, it is a matter of finding someone to "sit" and maybe he can come up with some ideas. Your sibling who lives so far away might be able to finance some extra care time for you. We can all contribute in some way to the situation. If you have grown up children they might be able to do some sitting for you too. Don't get yourself feeling like a prisoner, there are doors to walk through for you.

 

Hope to catch up with you in chat.

 

(((Hugs))) from Sue.

Share this post


Link to post
Share on other sites

Thank you all for your welcome and replies. You have given me some good ideas and I will be back here soon and post. Have to go finx Momma's dinner and get her set for the evening. It seems like that is the only time I can truly relax a bit! Happy weekend to all!

Share this post


Link to post
Share on other sites

Islandchic,

 

Just want to say Hi and welcome. My FIL was blinded by his stroke a year before Katrina then lost his life while being evacuated from one of the nursing homes just before the hurricane hit land. So I know some of the care giving you have experienced. Plus with her not wanting to do many things does make it much harder on you and I wish you the best.

Share this post


Link to post
Share on other sites

At 83 she should be receiving some combination opf SSA, SSDI & SSI. She should also be eligible for a free home health aide through your state's Long Term care system for the disabled, possibly even free respite care. Tell us where you live and maybe we can guide you with specifics.

Share this post


Link to post
Share on other sites

I know, as a "seasoned" caregiver how exhausted you are. I was one of the "sandwiched generation" caregivers for a time, too. My husband and my mother both had severe health issues. I also can understand your situation with your brother since I have two and when I'd call them I got lots of encouragement that I was doing a great job. Neither of my brothers were in a financial situation to help. My Mom didn't live with us the entire time, however I was her support for doctor's appointments, etc. and she lived about a mile from us. She actually passed away the evening of the day my husband was admitted to the hospital with congestive heart failure and I got the call the next day on my way to the hospital. She was living in a retirement community and didn't go for breakfast.

 

Now, having said that, I think it is time for you to remember the vows you took when you married. Your husband has been extremely understanding and supportive. However, your mother is draining your marriage because she seems to have a sense of entitlement. You do have some rights too. If she is really just refusing to care for herself at all then she is just using you. She feels entitled to be the center of your universe because you have put her there.

 

I put my husband in the center of my universe after his last stroke. He isn't very happy when I go out for a few hours. However, I have to do it for myself. I'm now blessed to have a care partner for him three hours every week. It's only three hours, but I wouldn't give it up for the world. Tough love may seem mean, but unless we take control of our own lives nobody else will.

 

At 83 there are probably several issues at play. You realize your mom will not live forever and you want to make these last years as comfortable as possible for her. The flip side of that coin is that she knows she won't live forever and she also knows exactly how to get what she wants - it's called putting you on a guilt trip.

 

I would suggest insisting that she do what she can for herself. She isn't going to like it - but if she can do it, you should not. It takes some effort to get some respite help, but it is possible. You can find resources through your local hospital or social services. Check out the Yellow Pages and look for an Area Agency on Aging.

 

Next, you really need to take some time with your husband. If you don't there may come a time when he isn't there and neither is your mom and you will regret the times you chose to put his needs at the bottom of your "to do" list. The funny thing is, by moving him up a bit you will be providing yourself with a little diversion when you go out to dinner, or for a ride even - without Mom!

 

Warmly,

Share this post


Link to post
Share on other sites

Thank you all, and you will be glad to know that I took your comments to heart and made time this weekend to go out shopping with my son for an afternoon and also went to a friend's home Friday evening after getting Mom to bed. I am going to start making more effort into getting out and about for yself. As we all know, however, sometimes after a full day of caregiving, it IS an effort to make yourself get out and go, I would just as soon crawl under the covers and sleep! I do not know what it is like to stay up very late anymore!

I think that is a combination of depression and exhaustion kicking in!

Happy St Paddy's Day to all of ye!

Share this post


Link to post
Share on other sites

Island Chic,

I am glad that you have been able to implement some of the get away stratagies. That is so important. I have been caring for my husband who has two massive strokes, unknown quantities of small strokes and now vascular dementia. I have no one else to help with his care except I can leave the house briefly when my teenagers are home. I limit that to avoid increasing the resentment. At first my husband was content to sit around all day. He did not willingly do any therapy and since his abilities at first were that of a new born, he became rather dependent. He is now able to get around the house, dress himself (sorta!) and handle most of his toileting (even less sorta!).

 

I have learned that I need to be tough. I have to insist that he do what he can to help himself. Sometimes it would be easier to do the job myself than to insist that he say, put on his own socks. Over time though I heard less and less requests for that job. Most of the time it is better for me if I cheerfully tell him to do the job then leave the room so I don't have to watch the struggle or listen to the whining. The reason for doing this is because it is best for both of us. He needs to keep active and putting on socks is good exercise both physically and mentally. I need a him to do as much as possible because I cannot do it all. When I try I wear myself out.

 

I have also learned (or rather am still learning) that I MUST take time out for myself. Caregiving is exhausting physically and mentally. It is also quite isolating which increases the stress. I have recently joined a small women's study group. Those couple hours each week have changed my outlook on life completely. I am much more positive and being able to share what is going on in my life with others has made the burden lighter.

 

Finally, I would encourage you to think hard about priorities. I spend a lot of time caring for my parents who are still able to live on their own. I also have young adults daughters who still call me regularly for help as well. I personally feel my priority is to my husband and two girls still living at home. This means I have to say no sometimes. I even have to say no to my husband in order to give time to my teens. This is HARD but necessary. My girls are just starting out in life and my husband (age 76) has all ready had a very full and happy life. The girls deserve a chance at the same. You still should have years of happiness with your husband and children. They need you so much right now too.

 

Ruth

Share this post


Link to post
Share on other sites

This website that opened my eyes, so to speak and I have felt more like I can allow myself some time for my family and myself. Mom has not had the happiest of weeks, but she is being well taken care of and I have left her a bit more than normal. (my daughter, bless her heart, works 12 hr. nights at the hospital, slept here so she could be on call if Mom really needed anything)

I even had my hair done yesterday, it was heaven!!

Thank you all so much for the support and good ideas!

Share this post


Link to post
Share on other sites

:happydance: :Clap-Hands: Yeah for you in getting some well deserved time for yourself and family. Mom WILL get used to the idea of you being away.

Share this post


Link to post
Share on other sites
Guest
This topic is now closed to further replies.
Sign in to follow this  

×