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 What happened to me? 
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post What happened to me?
I'm 43 years old. My 2 year wedding anniversary is in October. I'm caring for my 69 year old dad at home he has LBD. I feel like I have lost my life. I know this is horrible to say. I love my dad dearly and I'm taking the best care of him that I can. I just miss time with my husband and kids. The freedom is gone. Plus i have a full time job at home. Today has been a very bad day. Physical therapy. Then an argument because he feels I'm not giving him his meds on time. I promise I am. I've been putting off home health care for PT, but I think it's time. Mood swings are more frequent. Very unbalanced. Trouble swallowing. Dr wrote a script for n in home eval. I'm going to get that started Monday. Just feeling very guilty for ll these feelings I'm having right now. I love dad dearly.


Fri Jul 22, 2011 11:59 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: What happened to me?
One of the best benefits of this forum is learning that guilt in this situation is normal and that we shouldn't let it engulf our emotions. Does it go away completely? No, but it becomes less and is manageable with the understanding that it isn't because of our failings, even though most of us do have failings, but because we are human. No black and white here.


Sat Jul 23, 2011 12:54 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 188
Location: Portland, Or
Post Re: What happened to me?
Try not to do the guilt thing, it's really normal to feel trapped. I was just telling my brothers today that I don't have a life of my own. My sister is out of town now for three days and my brother ( who lives with my mom and myself) is going to Montana for a week soon, and they didn't have to ask me or anybody else for permission first! lol! I said if I just took off for a few days and didn't make arrangements for Mom first, everybody would have fits & probably file a missing persons report on me. I get very resentful that I have no life anymore, but never at my mom. It 's usually at my siblings because none of them ever bothers to come over and help me out ( but they sure speak up if they think I'm doing something wrong), and sometimes at Lewy's. I know this isn't going to last forever and I enjoy my mom so much! If there's any way you can get some kind of help with your dad so you can spend more time with your family, do so. Hope you feel better soon!

_________________
Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sat Jul 23, 2011 12:57 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 718
Location: LA
Post Re: What happened to me?
Please take advantage of whatever Home Health you can get. You wil find it a blessing. The PT and OT and Aide for the bath will all make him feel so cared for as well as the nurse checking his vitals and he will have less time to find fault with you. See if you can get the PT and the OT to stagger their visits, using one until their time runs out and then starting with the other which will keep the therapy on almost continual basis. Make sure the visiting personell have no other interruptions so your dad knows they are there for him alone.

I stayed in the background while they spoke with Mr Bobby and he loved them coming to see him. I usually had an icy on a stick or an ice cream cone for them to give him when they were finished.

You cannot do everything alone, no matter how much you want to. You are just one person .. and human at that. Plan for and accept help. We know you love him. Now love yourself.

Good Luck.

Dorthea

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"See this lady, she's 85, but she's nice"


Sat Jul 23, 2011 1:12 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: What happened to me?
Ah, Michelle. Don't fall into the trap I let myself get caught in and then got comfortable with. Establish firm schedules, with times that other family members, or home health care, become the hands on caregivers. Even if it is in your home.

I used to be very active in politics, active in music, have a social life. I also work full-time, going to an office every day. Because Mom lived with me, it seemed most logical that I be the one to take over the primary caregiving (with help from a senior daycare center when I was at work). At once, the social life faded. I stepped back from my political involvement and gave up the music groups. When I had back surgery a few years ago, I actually had to write my sisters a long email trying to get them to understand the situation and understand that Mom needed someone to stay with her while I was in the hospital and stay with us for at least a week after. One actually told me that Mom could be alone at night. Another told me that my surgery needed to wait for a more convenient time. (She was quite shamefaced when the surgeon told her that it was a mystery how I was still walking and that I'd waited too long as it was.)

As long as you are there and handling things, it is very easy for siblings to think that everything is fine and even believe they are giving you all the help you need by spending an hour with your LO here and there. DON'T LET THEM DO THIS!! At least try to keep them from doing this. If you can.

Our situations are somewhat similar, except for one thing. I am single. You have a husband and kids. You are more than a daughter. You are a wife and mother. What would your dad want for his grandchildren? I'm willing to bet that he'd want them to have their mother's availability and participation to be part of their lives. What would he tell you if his mind were still clear?

It doesn't mean you love your dad any less if you insist on sibling involvement. You are actually giving your siblings an opportunity to spend time with your dad in his remaining years. You are doing them a favor.

One thing, though, in defense of siblings: it could be that they are a little hesitant to come into your home to care for your dad. They might be concerned about disrupting your routine. Be sure they know that your routine has already gone out the window, because of this situation, and that there is nothing they could do to make things any more desperate.

Sending you a virtual hug.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Sat Jul 23, 2011 2:03 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: What happened to me?
Michelle, years ago I wanted children. I had two sons. Taking good care of them became the most important thing in my life. But it was never the only thing in my life. I had friends. I had a marriage. I interacted with my sisters. We swapped baby stories and toddler stories, and teen stories. I had a career. I worked on professional development. I tried to cherish each stage of the kids' growth, knowing it was fleeting, and looking forward to the time they wouldn't be under my care and we'd have a different kind of relationship. As much as I loved my sons, there were times when I had the screaming meemies feeling trapped, feeling there was no "me" time. I hired babysitters and did things with my husband, and with other adults. I did not feel guilty about it.

My children are grown, and once again I am taking care of a dependent. This time around I do not look forward to less and less dependence on me -- I know it will only increase. I do not look forward to a new realtionship at the end of the dependence -- I will be a widow. I have less interactions with my sisters, since we all have very busy lives. There is no one I can swap dementia stories with, except the folks in my local support group and this forum (for which I am exceedingly grateful). I'm older myself, with less stamina and energy and with some health issues.

Tell me, Michelle, do you think that I was a horrible mother because sometimes I needed me time? That even though I had freely chosen the role, I sometimes resented the demands of motherhood? Do you think I'm a horrible caregiver because I sometimes resent the demands of this role that was thrust upon me? Because I sometimes wonder whatever happened to "me"? Am I an awful wife to insist that my dear husband attend a day program a few times a week to improve my ability to cope?

If you think I was/am horrible, then I understand you labeling your own thoughts and needs as "horrible." I would hope, though, that you will cut both of us some slack and give us both credit for doing our best for our loved ones, in spite of our human limitations.

It is very, very hard. I hope you will figure out some ways to embrace your role as a newywed, and as a mother, as well as a daughter. That you can't do everything you'd like to do in all the roles is a given. Please don't let that make you feel inadequate!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Jul 23, 2011 3:07 am
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: What happened to me?
Thank you all for your support. That's why I love this forum. You all understand. I'm the type of person that keeps a few very close friends and even though they listen, they don't really get it. So I've started keeping things to myself. I only have one sister and she lives half way across the country. Although, she would help if she were here, it's hard for me too even communicate to her how things are with dad. She talks to him on the phone and it just doesn't truly relay how ill he is. Dad has four siblings still living. His brother lives five hours away. One sister is in a nursing home. One sister works full time. And the other sister is a full-time caregiver to her husband who has alzheimers. She is a great emotional support to me and helps as much as she can, but also has her hands full. So basically, I've got to "man" up! I can do this and I will be fine. I just need to get my ducks in a row and realize I do need help. First step, calling home health Monday. It's just been a rough week and dads illness has started progressing so quickly.

Thanks everyone
Michelle


Sat Jul 23, 2011 8:33 am
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: What happened to me?
Your story could be mine. Home health is a blessing and we have a dedicated caretaker for weekdays. I continue to work full time and have kept up with my hobbies and social groups, although I have become more selective about which activities I will do. Family help, other than my husband or sons, is non-existent. I actually had one of my MIL's daughters tell me, when I had a trip planned to go back east to visit my own elderly parents, "Is that a good idea?" Pretty nervy. I still go every year for a two week break. My dear hubby takes over my duties with additional outside help on weekends. Then he gets to go for a big weekend out with his pals. I only say this, because I don't let myself feel guilty. I have my own life, and so do you. Never feel too prideful to ask for help. It's out there. Good luck.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sat Jul 23, 2011 9:16 am
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Joined: Sat Jun 18, 2011 9:53 pm
Posts: 17
Location: Costa Mesa, CA
Post Re: What happened to me?
Ahh - I just basically wrote about these feelings in Off Topic. I, however, chose not to have any children, and now I am learning (slowly) how to be a parent... I am hugely lucky to have a supportive and mostly understanding husband but he feels like I am spending too much time away and wants to problem-solve when there isn't always an immediate solution.

The guilt and worry just eats at me for Dad just 'sitting there' day in and day out - makes me want to move him (early?) to a place that will have more activities and interaction/socialization. I already don't have much social live (even before Dad).... I feel like I have detached already and am treating Dad like les than a Dad. He is not 'fun' to be around and I do not enjoy hanging out with him but I try to spend at least an hour with him when I go over daily (1 mile away). It makes me sad that I feel this way but I also have to remember we were never a loving, daddy's girl family, so that's just the way we are (and I do love him but now I am caretaker differently than daughter).

I have never been super responsible and organized and I cannot effectively balance two households and a home business - I have gotten behind on EVERYTHING and that is the most distressing thing.

We are taking a 10 day trip end of August and I'm worried about something happening to Dad (currently in independent living community) while we're gone since there will be no phone coverage - there is no one to assign 'responsibility' to so in case he should fall or need a medical/care decision. I'm still going to go because I need it (a festival) but will have to figure out what to do about a responsible person (and tell Dad NOT to fall! - LOL!!!) I don't really want to move him into a respite care but it is an option.

I think the bottom line is to try to find or make some balance and peace (even and Craig reminded me in a prev post that 'balance is for scales...') and do not give up all of the things that make you 'you'. Easier said than done, perhaps.

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Jenna - daughter of Dad diagnosed in 2010 with PD and in 2011 with probable LBD. Symptoms were present for a few years prior. Dad is 74.


Sat Jul 23, 2011 2:49 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: What happened to me?
Jenna, here are a couple of thoughts.

I have learned from experience with my mother that having interaction and activities available does not mean that your LO will want to participate! So I hope you do not make any big decisions just on the hope that your dad will participate. He may be past that point or not naturally inclined toward those things. That was my mother--we really pushed her at first but she simply cannot or will not do it. She does spend a lot of time alone in her room doing not much of anything, but that seems to be what makes her comfortable, certainly more comfortable than being forced into a group activity or socializing. In her case, I think her cognitive decline makes it much harder for her to communicate and understand conversation, so socializing is just very uncomfortable for her now. Maybe your dad doesn't need those things, either.

Of course your new relationship with your dad, as his CG, and especially as LBD changes him, will be really different. My mother is no longer herself and definitely is not any fun anymore. I don't enjoy spending time with her, either. I do it for the sake of the mother she was. Doesn't mean I don't love her, just means things are not the same. I spent a long time feeling guilty about this but finally realized I cannot help how I feel. And neither can you. You and I and so many others are just doing our best in very tough circumstances. It's all we can be expected to do.

Lastly, I really hope you will consider respite care while you are on your trip, so he will be safer and you will not be worrying every moment, but even if not, are you going to a place where you cannot even go find a land line so you can call in? Like we used to do in the days before cell phones? Surely almost nowhere is that remote these days. Seems like that is the minimum you will need to do if you cannot delegate or use respite care.

Julianne


Sat Jul 23, 2011 3:45 pm
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Joined: Tue Jul 05, 2011 11:06 pm
Posts: 49
Post Re: What happened to me?
I totally understand about the just sitting all day. Dad sits in his recliner in his room and watches tv sometimes with the lights off and door shut. Nothing I say or do can get him out. And my Dad didn't raise me so we were not very close when I was young. So here we are. My husband and I moved him in our home about a year ago. As for a vacation, ha, at this point, I'm worried to death too go out to dinner.

So, once again this evening, he became very argumentative saying that I'm not giving him his meds on time. I try to always be so gentle and tolerant. But tonight I just flat out told him I'm not putting up with this every day. He says he's moving out. Ok?!?!? Where does he think he's going to go? I know this is impossible for him to do. I'm just not sure how to deal with false accusations toward me. Of course, now here comes the guilt on my part again because I know it's Lewy not Dad. Lord help me!


Sat Jul 23, 2011 7:57 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: What happened to me?
My MIL also stays in her room all day sometimes with the lights off and watches TV. She always shuts the door. The only time she comes out is to to go the bathroom and at 5pm. Then back to the room. If I don't turn on a light she sits in the dark. Must be a Lewy thing.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sat Jul 23, 2011 9:09 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: What happened to me?
I think it is a Lewy thing. Derek doesn't want to be entertained. He does not want activities. He doesn't even watch TV. He does have some very interesting delusions so I'm assuming they are his entertainment.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Jul 23, 2011 11:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3309
Location: Vermont
Post Re: What happened to me?
Michelle - correcting or arguing with our LO who are not dealing in reality will do nothing other than frustrate you and everyone will end up angry. What if you just say "You're right. I did forget to give it to you so here it is now, so please take the meds." What's the worst that could happen if you just agree with him and go on from there?
You do need to go out to dinner. You do need to go on vacation. You do need to take care of you. I hope you will get help to come in and relieve you whether it be a friend, relative, neighbor, paid CG or whatever. Or, put your dad in respite care for a day, a week or two. It won't be good for you or your own family to have this disease completely take over your life. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Jul 25, 2011 1:20 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: What happened to me?
Michelle,

Even if your sister lives halfway across the country, she should be able to visit and give you a week off here and there. If she can't afford it, see if your dad's siblings can help.

I love my mother dearly and, if my sisters left us to ourselves, I wouldn't hesitate to do whatever is needed to give her attention every day. But I have finally reached the point at which I can tell my sisters "she's your mother, too." Sometimes it actually works.

Do what you have to in order to get some private time with your husband and kids. They won't be kids forever.

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Jul 25, 2011 2:06 pm
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