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 My mom moved into my old bedroom... 
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post My mom moved into my old bedroom...
I feel so bad for my dad - recently he took my mom on a cruise that they had planned for about a year (then she was diagnosed this past winter). He had an awful time - she wouldn't sleep, she kept wanting to wander around and go upstairs (she thought she was at home) or downstairs to do laundry. She got up one night and fell in between the bed and the wall and my dad tried to help her up and she scratched his face and arms trying to fight him. She has NO clue what she is doing half of the time and she was never, ever a violent person. The change of scenery just seemed to have really messed with her. So no more traveling for them...

Now my brother (who lives with them) says she has been sleeping in my old room and has moved her clothes into my closet. Both my dad and brother have asked her about it and all she says is that my bed is 'comfortable'. It doesn't seem that she interacts much with my dad at all. I just feel so awful for him. He's losing his wife right in front of his eyes (she's only 55 years old!!) and she barely speaks to him. I don't understand why she is doing this (not that there's a logical reason, obviously). I guess I'm wondering if this is common, if she's mad at my dad or something because he's her primary caregiver and always telling her what to do.

I'm anxious because I haven't seen my family since December and I'm making the trip in August (this time with my boyfriend so he can meet them). I don't know how she'll be, if she'll be at all herself, how my dad is coping, everything. Ugh, so frustrating! If anyone has any advice that I can relay to my dad I would love it. I just need to learn as much as I can so I can attempt to help him - I know he won't (at least at this point) go to any support groups because he doesn't have time or energy and so I need to feel like I'm helping as best I can.


Thu Jul 08, 2010 4:48 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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She might have Capgras syndrome, where she doesn't recognize your dad as her husband. My husband almost never recognizes me as his wife and refers to me in the third person. It's most common with spouses rather than other relations.

Yes, it's very frustrating. We're going through a really troubling time right now, too, although my husband is older. Your mother is so young! How heartbreaking for all of you!

_________________
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.


Thu Jul 08, 2010 5:12 pm
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Joined: Sat Jan 30, 2010 3:53 pm
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Thanks for that info - since we're still kinda at the beginning with dealing with this it's tough to really get a grasp of what's going on in her head. My brother doesn't think she's not recognizing my dad as her husband but I guess that's always a possibility as the disease progresses.

I do hope things get better with your husband! I don't even live close to my family right now (sometimes I am relieved that I don't and sometimes I feel a lot of guilt that I'm not closer) and it breaks my heart every day. There's just so much that my mom cannot do - can't cook, clean, use a microwave, drive, grocery shop, write a check - it hurts to hear of other things that she can't do or weird ways she's behaving. Oh, how I wish I could wave a magic wand and cure all of our LOs of this horrible disease! I want my momma back! :)


Thu Jul 08, 2010 5:28 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Hopefully your dad can join a local caregivers support group, perhaps one sponsored by the Alzheimer's Association. And/or he can get some counseling.


Thu Jul 08, 2010 6:56 pm
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Joined: Sat Jan 30, 2010 3:53 pm
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Oh, I would love if he joined a support group - I'm sure he desperately needs the additional support and information. Even for him to just feel like he's not alone would be a relief I think. I'm going to discuss it with him during my visit next month; I've brought it up with him before but he was just not receptive. He says he doesn't have enough time in the day (which, to be honest, is true - he is also the primary caregiver for my grandma and has been trying to run a business and the entire household since my mom can no longer help much). I think it would be better for him to join a group now than to wait for my mom to get much worse so hopefully I'll have more luck talking with him about it in person!

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Thu Jul 08, 2010 7:01 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Perhaps you can find out about what support groups exist now, and then when you are in town check them out for yourself, and see if your father will go along with you.


Thu Jul 08, 2010 7:25 pm
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Joined: Sat Jan 30, 2010 3:53 pm
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Thanks, Robin, that's a good idea. I will definitely look into it!

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Fri Jul 09, 2010 1:53 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
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Hi Jamie - I am so, so sorry for your situation. Your mom is SO young! Does your dad read this forum or can you convince him to join the Caring Spouses Forum? I get so much support from this forum re: my dad and all his issues.
I, too, live far away, and when I leave his state I have that ambivalent feeling of being relieved I don't have to deal with things every day, and feeling guilty, and then being frustrated when I get home (500 mi. away) when there is some household, yard, tax, medical issue or whatever that I have to try to solve by phone. I now have a whole fleet of people helping with the house, and I can just call them and ask them to go fix whatever needs to be done and not worry about strangers in the house. I have a pretty good relationship with 2 out of 3 of his drs. and the nurses at the ALF so there aren't too many bumps in the road there. But it is difficult. When I am here at my dad's I get very little sleep - I have to get up early to get everything done during the day and I just go all day. When I get home I sleep 10 - 11 hr. a night!
The whole thing stinks! And then he is angry when I see him and angry when I leave. Sorry - I was trying to give you support and here I am venting my own stuff because it's been a very exhausting week of construction workers at my dad's house, newly found house problems, and my dad furious with me every time I've visited. I'm "calling in sick" tomorrow - I just can't face his anger another day. I'll visit Sunday.
I hope you can get your dad some support through these various internet sites if he can't/won't join a local support group.
Take care, I'll be thinking about you. Lynn


Fri Jul 09, 2010 5:04 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: My mom moved into my old bedroom...
Ah, Jamie. My heart goes out to you, your brother and to your parents. Your mother is two years younger than I am, and I'm the caregiver! My Mom is 88 and didn't show obvious symptoms until about 5 years ago. Thinking about all that has happened in the 33 years since Mom was 55, well, this horrid disease is taking so much from your Mom and your family.
When you can, try to give your Dad and brother a break. Your Dad, especially. I thought that being a primary caregiver and working full time was hard. Your Dad has your grandmother, his business and home to deal with. (My sisters are kicking me out of my house this weekend and forcing me to spend time on myself, God bless them.) If it works out financially, you might visit and send your Dad and brother fishing, or golfing or anything they enjoy doing together.
Jamie, dear girl, you aren't any more than 30, are you? Younger? So much is changing in your life. I hope your boyfriend is someone you can count on. The last thing a parent wants is to impede the progress of their young adult child. That may be why your father is trying to take everything on, himself. But, having all of my nieces and nephews at about your age, I know what kind of strength you can come up with when needed. Try to convince your Dad that helping to care for your mother is part of who you are and part of the life you want to have, while you still can. Look at your schedule and try to find a few weekends or some vacation time when you can go home and just be with your Mom. Years later, you'll be glad you did.

Strength, endurance and peace to you and your family.

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]


Tue Jul 13, 2010 1:20 am
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Joined: Sat Jan 30, 2010 3:53 pm
Posts: 40
Post Re: My mom moved into my old bedroom...
Thank you both, so much, Lynn and Kate. I really appreciate your kind words and support. This is probably the most difficult things my family and I will ever go through. We just don't think of the big picture as far as my mom goes - it's too heartbreaking. That and it's too hard to do anything but take each day as it comes. I'm sure that becomes everyone's mantra when dealing with this disease!

Lynn, don't be sorry, you sound so tired and I'm sure everything has been overwhelming lately. I hope that things get a little easier soon!!

Kate, you're right, I'm just 28 - I think that's what makes this all hurt so much sometimes. You always think that your parents will be there for your wedding, when you have kids, etc, etc, etc. And, even if my mom is still around when I get married she won't really be herself. She probably won't be comfortable (she can't carry a conversation much these days so groups of people are overwhelming for her) and it will be stressful for her and my dad no matter what. I am very grateful to have my dear, sweet, supportive boyfriend around. He's been so great to me - he was deployed this past winter and I swear sometimes I felt like he was supporting me more than I was supporting him! :) I don't doubt my own strength but I do worry about my brothers and dad. My dad is a very strong person but I know everyone has their breaking points - even him. Luckily my job is fairly flexible and my boss is very understanding - I was able to be with my family (and work from my brother's house and the hospital) for about 3 weeks over the holidays. Next time I have a nice chunk of time where I'm not as busy I definitely plan to do that again and help give them a break. I'm so glad your sisters are forcing you to take a much-deserved break! I really hope you can relax and enjoy it!

My parents have always been very adamant that we do what makes us happy and I know my dad does not want my brothers or I to stop living our lives because my mom is not well. He knows I wish I could help more and that I will visit as much as I can, and that even if I lived closer that I could only really help if I quit my job and lived with them. They would never want me to do that and I don't plan on it; we all know and understand that we're each doing the best we can. I always took care of my mom when I was a teenager (whenever she had surgeries or doctor's appointments I always went with her, I felt responsible for helping her when my dad couldn't) and my dad knows I'd do more if I could now. Hopefully the boyfriend and I will be leaving Kansas for Virginia in the next year and a half, depends on where he gets stationed. We'll see what happens and in the meantime just hope for the best and take each day as it comes.

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Jamie - my 56 year old mom was diagnosed with LBD in January2010, moved to a special care unit in December2011.


Tue Jul 13, 2010 12:53 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: My mom moved into my old bedroom...
Rae - I don't know how I would have handled such a tough situation at your young age. It sounds like you are doing a marvelous job, given the circumstances. Hang in there, and come here often for support when you need it. You sound like a very strong, caring young lady who will make it through this very difficult and heartbreaking process. Take care of yourself.
And, I am tired - going to bed early tonight for once! 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.


Tue Jul 13, 2010 10:05 pm
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