No Friends... No Social Life


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No Friends... No Social Life

Postby Kandis » Sun Feb 26, 2017 12:42 am

Well, here it is... Saturday night and I'm sitting home alone and bored. My husband safely tucked into bed and sleeping... well at least for the next hour or so before he wakes up again since he can't sleep. We've recently moved 3,000 miles from the home we loved to be near family. Don't get me wrong, my family is amazing. They have offered more support than we could have hoped for, but at the end of the day, I have no friends. Where I use to live, I had a circle of girl friends for 15 years and we were either meeting at Starbucks, or going out to lunch or having dinner at one of our homes. Now my life is full of working 40 hours a week... at night and then being the sole care giver of my husband during the days and my days off. I took a night job so that I could be around the house during the day when my husband was more active. My husband is home bound and the only time he leaves is when I take him some where. I feel too tired and too guilty to go out and make friends. He spends so much time home alone as it is, that leaving him yet again to go have fun just tears me apart. I always say that on my night off, I'm going to join a bible study group, or attend a Meet Up group for a walk.... but when I have to leave him home alone, it just breaks my heart, so I don't go. I'm a very active and social person and if I'm not working or running errands... I'm home alone, granted my husband is here but he really can no longer have conversations, so it generally is just me rambling on about something and him agreeing. I try to be positive and upbeat when around him, but he generally is irritable and grumpy and the smallest thing can set him off. Some days, I find it easier just not to talk than have him get upset.... so then I feel even more alone. Everyday is so different with him, I've given up on be hopeful in having a nice day with him. I can't fault him for being irritable, I would be too. I can't imagine what he must be going through. How do I balance being good to me and in the same time, being a good caregiver and loving wife. I feel guilty that I want to go out and have fun, but I've always been the type of person to live in the day because there is no guarantee that tomorrow will even come. I'm a glass-half-full kind of girl and live today as its the last, but am now having to reconcile the thought process into live today for my husband because his days are numbered and I can live after he is gone. I know there is no good answer to all of this. This disease just sucks to the ends of the earth. Every day I just wonder how it will turn out. For now, my husband can walk slowly around the home but will still fall on occasion. Some of his falls have been pretty bad but without serious injury. Every time he clears his throat, I wonder if he will get aspiration pneumonia. I feel like I live on pins and needles. Any time he makes a loud bump, I think this is the big fall that does him in. I've started applying for Medicaid just to see what it will take for him to qualify. I've been toying with the idea of hiring home help, but don't really have the month to month cash for that. I feel so sad that he is all alone so much. I think our new neighbors are a bit nervous coming to visit him since he can't talk very well. I had asked him if he would be interested in anything like adult day care and he completely panicked and thought I was trying to dump him off some where for good. I think Dementia would truly be a blessing for him so he didn't understand all that he was going through, but he shows no signs of that. I will say though, I have noticed a few thing recently that concerned me about his cognitive decision making skills. Nothing serious or dangerous, but things that the man I married would never do. I'm still in complete disbelieve this is our life now. I keep hoping he wakes up one day and is back to normal. This really can't be it for a 32 year marriage, can it?? My best friend's husband left her after 30 years of marriage, she complains about how hard it is... but yet she is now on her third boyfriend since the split, she goes out to dinners and event and is getting good sex.... I think her life is so much easier... and yes, I will admit it.... I'm freak'n jealous!!!!!!! I spend my weekends bathing my husband and even wiping him on the days he struggles so bad. I feel so guilty in saying this.. but what about me, what about me having some fun. But then after my selfish temper tantrum, I realize this is no picnic for my husband either and I just go back to caring for him and put my life aside for a while. Sorry for being so whiny today, but just needed to vent. I like it better in here than on the Facebook pages. Thanks everyone for being here for me tonight.
Kandis
 
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Re: No Friends... No Social Life

Postby myownwoman » Sun Feb 26, 2017 1:19 pm

Honey, I think I can safely say that everyone of us here has been where you are right now, and understands all the feelings you've expressed so well. I am so sorry to hear that you had to move away from your friends.

I can only wish you more "better nights" than "bad ones".

Kate
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Re: No Friends... No Social Life

Postby Robin » Sun Feb 26, 2017 1:40 pm

Sounds rather miserable... Sorry.

Perhaps ask yourself if the roles were reversed, would you want your husband to get out of the house and attend a bible study or some other activity?
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Re: No Friends... No Social Life

Postby Brutus22 » Tue Feb 28, 2017 1:19 pm

Wow I feel like you just wrote that entire thing for me. Some days I say I can't do it and other days I am passed at myself for whining. Mick is in a wheelchair and cannot walk at all. When he does try to talk to me it takes so long for me to understand that he gets agitated and just turns his head. I quit work 3 years ago because he could no longer be left alone and every couple of months some of the women will call to go to lunch or dinner. I have 2 sons who always are there if I need them so I really do not feel bad about leaving my husband. I get so excited to go but then can't wait to leave. Everyone talks about going here or there with other couples, planning vacation or remodeling the house with their spouses and all I can think of is my husband is getting a little worse each day. It's true I am jealous but I think I also get tired of giving bad news. Its not like I can say we're doing ok because it is not ok. I do tell myself that Mick and I do not have a lot of time together so I can do other things when he is gone but the truth is I have started to think that by then I will be spent both physically and mentally. I am 62 and can see how fast I have aged in the last couple of years. My one saving grace is that I can watch my granddaughter who is 2 while her parents are working. She is so much fun and it is remarkable how compassionate she is with grandpa. So I tell myself to count my blessings everyday even though some of those days are really hard. I am sorry for what you are going through but hopefully it will help to know you are not alone.
Terry
Brutus22
 
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Re: No Friends... No Social Life

Postby grandmakcat » Tue Feb 28, 2017 5:06 pm

I don't care who you are, no one in even the best marriages is a saint. Especially when it comes to becoming the caregiver of your spouse. Every single thing you are feeling is normal and completely understandable. I quit my job and took care of my husband for 2.5 years on my own 24/7 and I too felt lonely and tired and sad. I did everything I could to keep things upbeat and to laugh and enjoy each day to the fullest in a bad situation, but at night, when I was sitting alone I did a lot of crying. And worrying. And second guessing. And being angry. And being sorry.
I am sure that working along with being your husband's caregiver is beginning to take it's toll - you are tired. Is your husband a veteran? I was at least blessed that because he was we were able to tap into some of the services they provided like a home health aide a few times a week (when they would come...). I looked forward to those few minutes to myself, even if it was to rush through errands, but I felt guilty getting out while Denny was stuck at home. I am sure if the roles were reversed, I would have been in a nursing home! LOL!
Since you moved closer to family, is there anyway someone could come and give you a few hours at least a week to get away and breathe? I will tell you now though - now that Denny is gone - I don't miss the disease but how I miss him here!
All I can say is don't be hard on yourself. Try to find things to enjoy and laugh about because there is enough that isn't very funny. Take one day, sometimes one moment at a time. Forgive yourself and try and take care of you. I say that because I am now seeing the effects not doing that has made on me physically. Your hubby is still in there and he still loves you for you, even if he can no longer express it like before. Hugs and prayers to you! I am glad you reached out.
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
grandmakcat
 
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Re: No Friends... No Social Life

Postby HelpingDad » Wed Mar 01, 2017 7:29 pm

I think your feelings are normal, it's extremely hard to basically put your life on hold while caring for someone. I've been taking care of my dad for a little over 2.5 yrs now, he is divorced and I am an only child so myself and my wife are his caregivers. I did recently start having an aide come in and bathe him since he's now at sponge baths and I suck at it. I get water everywhere and think both of us were struggling way too much. Later this month we're going to try a week of respite care at a facility operated by the VA. Truth be told I am counting down the days to when I have a whole week to do what I want, when I want. It may sound selfish but it's been a long while since my wife and I got out at the same time, dad can't be left alone.

Good luck, recharge when you can and keeep going forward.

Ron
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Re: No Friends... No Social Life

Postby svargas » Thu Mar 23, 2017 11:36 pm

Wow...I also thought you were telling my story...My husband and I are new at this terrible disease...he was diagnosed in October 2016..
Like you we moved to be closer to our kids and grandkids and they are wonderful and will come when needed to help. But they have kids and a life too, so I try not to ask so often. I am not working at this time, but will probably need to in the near future.
I have always been the social one and had my girlfriends where I used to live, which is 2 1/2 hour aways, so not able to run up for lunch etc.
We have been married or 49 years and have always done things together. When I go out and see other couples doing things together is when I get the saddest...I think I might just move their carts at the store, but that would be mean... lol...
I have done a lot of reading and research as I am sure everyone has done, just to get familiar with this insipid disease and I have to say it scares me..
This is the first time that I have written and I am thankful that everyone is out there... It helps to know that we are not alone in our journey...
svargas
 
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Re: No Friends... No Social Life

Postby myownwoman » Fri Mar 24, 2017 10:26 am

Welcome to this forum, svargas, but sorry for your need to be here. I hope the information - and our input - will be of some help to you and your husband.
Kate
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Re: No Friends... No Social Life

Postby svargas » Fri Mar 24, 2017 1:07 pm

Thanks Kate.. I have so many questions, one for sure..My husband has a difficult time keeping his eyelids open, at this point I use tape to raise them up a bit so he doesn't have to struggle so much..Does anyone have anyother suggestions?
Sheila
svargas
 
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Re: No Friends... No Social Life

Postby Brutus22 » Sat Mar 25, 2017 10:42 am

Hi Sheila,
Mick also has trouble with that and our neurologist said when he cannot keep them open we will use botox to help him. Right now I just have to tell him to open his eyes a lot and he can do it when reminded.
Terry
Brutus22
 
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Re: No Friends... No Social Life

Postby svargas » Sat Mar 25, 2017 2:41 pm

Thanks Terry...at this time my husband, Butch, has to fight to keep them open..sometimes he sits with his hands on his forehead just to keep the his lids open. I haven't talked with the doctor about Botox, but certainly will when we see him next.
svargas
 
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