dealing with dementia - Mothering Forums

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#1 of 28 Old 01-14-2010, 03:35 PM - Thread Starter
 
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I was hoping to reach out, in hopes that someone here can offer words of wisdom. Mom's illness started off with strange little things she would say or do. She has always had issues (emotionally) and I have tried for years to make peace with her despite our past. In less than a year she has declined tremendously. She is very far from herself now, living in late stage dementia. She had to go into a nursing home two days before Christmas, after months in the hospital. She always expressed that her worst fear was to be put in a nursing home. She seems to be adjusting. She still knows us, but she struggles to speak and express herself.

I feel so guilty. Rationally, I know I there is no one to blame, nor can I do anything to heal her. How do I stop beating myself up?

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#2 of 28 Old 01-14-2010, 06:01 PM
 
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Find a caregiver's / family member's support group . . . maybe her nursing home can give you info?

What a tough situation, seeing her lose so much as you lose, too. I'm so sorry.

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#3 of 28 Old 01-14-2010, 06:02 PM
 
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s IDK. My grandma has dementia/alzheimers, and its hard. Mostly, she just doesn't talk anymore... I feel bad for my grandpa who has to take care of her, cause' as my dad says she's just not a companion anymore, let alone company. They live in a nice, big condo, and its mostly just quiet... Apparently my grandpa finds her just staring at the tv when its off sometimes cause' she turned it off accidentally and can't figure out how to turn it back on its very sad.... Its an awful disease - we watched her sister (my great aunt) go through it several years ago... and that was awful. This is just as bad, if not worse since I am/was so much closer to my grandma... and its very upsetting for my dad who used to be very close to his mom... and as he told me the other day, she's just not the woman he used to know even just 2 or 3 years ago.
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#4 of 28 Old 01-14-2010, 06:27 PM
 
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Tricia - what an incredibly hard decision you had to make. It's easy for me to tell you not to feel guilty but for you I know it is probably impossible regardless of what you're told.

Your mother needs to be somewhere where she will have the help and care she needs 24 hours a day. I can see by your signature you have children and one on the way (congratulations!) so becoming her caretaker 24 hours a day, seven days a week is impossible for you.

You say she has trouble expressing herself...can she draw, play any instrument or sew or anything like that? Perhaps that would give her an outlet and also a distraction. I am sorry you are having to watch your mother drift away. I am slowly losing my father to dementia from a series of undetected strokes. It is hard and frustrating. He's not the father I knew and it's hard for me to be patient with him. I know it's even harder for my mother and there may come a day when she will need help in taking care of him and we will be faced with the same situation you are.

I wish I could say the magical words that you need to hear but I don't know what they are. Just know that you are doing the best you can for your mother and like MariaMadly suggested - find a caregivers support group.

Take care.

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#5 of 28 Old 01-15-2010, 01:53 PM - Thread Starter
 
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Thanks for the reply. No, mom can't read or anything anymore. She sleeps 18 hours a day, so it is a big deal if she is even conscience. Thanks again.

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#6 of 28 Old 01-24-2010, 01:37 AM
 
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Hi- Hugs to you. My mom has Alzheimer's and my dad had been (poorly) caring for her until he broke his hip last month. I found her a residential care home near my house and she's been there for a few weeks now. I feel sad for her having to be separated from family, but I know she's being well cared for.

It's really hard to watch a parent slip away, even if you've had issues in the past. Why do you feel guilty? Is it because she's in a nursing home or because she has dementia?
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#7 of 28 Old 01-24-2010, 11:52 AM - Thread Starter
 
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I'm sorry.
The thing that I am struggling with lately is the feeling that she is no longer present in our lives. She is an hour and a half drive from here (one way). Never in my life has my mom been so kind and loving. It sounds horrible, but she has always been so combative and troubled, I love her like I never could have before. It is likely she will never leave that bed, again. Mentally, her reality mingles with dream stuff. Still she pleas to go home (to Ossining with her parents in 1955). She had a hard life, she made life hard. Now the family conflicts have melted away, and there is peace. And sadness that she could not know it. It is surreal.
Love is the answer, we love each other the best we can while we can.

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#8 of 28 Old 01-30-2010, 01:16 AM
 
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I have two grandparents who have had this. One had official Alzheimer's and the other is Dementia...though my family isn't the sharing type, so it might actually be the big A as well.

You can't beat yourself up. We had to put my grandfather into a home and it was so sad, but it got to a point where he was becoming a danger to himself, my grandmother and any of the helpers they had.

My grandmother (on a different side of the family) lives alone at home, though they finally have tried to bring in help to see if it will work. She WANDERS OFF. She will triple up on her medicine because she can't remember if she took it. She rarely eats or makes herself meals and she goes back and forth between now and sometime back in 1940.

Dementia/Alzheimer's is a very scary thing and I feel for you. But, sometimes, well...you have to keep your loved one safe.

I've always just played along when they go to their alternate reality...it seems to be easier for them if you do it.

I really can't offer much help, but just hang in there. Give her all the love you can and know what you're doing is right, even if it hurts.

OH...and PS...about expressing themselves? They can often remember music and songs. My grandfather could not say anything besides "okay," but he could sing all the words to Jingle Bells.

Welcome to the Real World she said to me, condescendingly, take a seat. Take your life; plot it out in black and white.
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#9 of 28 Old 01-30-2010, 03:06 PM
 
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back to you.

My Dad died of Alzheimer's October 2007 and my Mom has it now. I have had 4 Aunts (on my Mom's side) die with this.

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#10 of 28 Old 01-31-2010, 07:27 PM
 
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Hugs!

My grandmother is starting to lose her memory and slips into episodes of dementia. Lucky they caught it in time and she is now in two meds that slow the progress. She's more like herself now. She only slips into the dementia when she's scared (like when she fell and hurt her hip). Luckily, she is cared for by my aunt, who has lived with her for her whole life.

It's rough situation to be in. The most important thing is to make sure she is safe and comfortable.

Maybe try to get into a support group for people dealing with this. I know there are many. Hopefully there's some in your area.
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#11 of 28 Old 02-01-2010, 01:44 AM
 
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A great "support group" is online at the Alzheimer's Association's discussion board. The people in the caregivers forum have been really helpful to me. Here's a link to anyone who is interested:

http://alzheimers.infopop.cc/eve

I posted this link a while ago in another Alzheimer's thread and I should probably do it periodically on here, because I think it's a great resource.

Savoir Faire- That sounds like a really unsafe situation for your gma. I hope the help works out. It sounds like she needs someone with her 24/7 if she's wandering and overmedicating.
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#12 of 28 Old 02-01-2010, 01:57 PM
 
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My grandmother has dementia and has been in a nursing home for years. Tricia, I thought that was interesting what you said about her personality changes, no longer being combative, etc. My grandmother had a lot of anxiety, quite severe, but was never diagnosed. Now in the advanced stage of dementia, the anxiety is gone. She is so calm and peaceful now. She is not the grandmother I grew up with, but it is so nice to see her feeling at ease. She also does not remember that my dad passed away a year ago, which I think is truly a blessing. When she asks for him, we say he is in heaven, and this makes her smile.
I feel horribly guilty that she is in a nursing home, now that my Dad is gone, I feel even more responsibility. I just don't know how we would take care of her physical needs if she lived with us. My aunt and uncle see her weekly, they take her out faithfully, even though she never remembers it.
Anyway, just wanted to second the support group. I haven't gone but a friend who does shares lots of info with me and we talk about it. So many similarities in how we feel, in the experiences our families have shared. It is comforting.
Now my mother in law is showing signs of dementia as well. My FIL takes good care of her but if he ever can't, we hope to have her live with us if possible, for some period of time, but realize that isn't realistic forever.
(((((hugs, Tricia))))), these decisions are just not easy.
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#13 of 28 Old 02-18-2010, 11:54 AM
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I came over here to see if there was an Altzhimer's thread. My mom is in the middle stages (at only 67 years old), and I am soon to be her primary caretaker. She is moving in with me, but I think that I will end up putting her in assisted living very soon. We have arrangements for her during the day when I am at work for now.

The thing is, with her living with me, I can not leave the house without her when I get home from work, so my life will only be working, and taking care of her... no more gymnastics lessons for DS, dinner with friends, etc... Going to a nursing home is my mothers biggest fear too, but I think that if she were normal, she would never want to be such a huge burden on my family. I try to remind myself of that when I start to feel guilty about sending her to assisted living, and it does help.

She is also very aggressive and sometime violent, which scares me. At other times she is depressed and wants to die. This is a horrible disease, but I am certain that my mom would not want it to ruin my life and my family's life as it as ruined hers.


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#14 of 28 Old 02-18-2010, 05:36 PM - Thread Starter
 
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It's a heart breaking thing to live with.I'm sorry. I was working as a home health care aid, last year. It's a hard, yet rewarding job (taking care of someone) I hope things go well for you.
I am painfully pregnant, I haven't seen mom in three weeks. I couldn't make the trip to see her on her birthday. Next month would have been my parents 40th wedding anniversary. My dad just started seeing someone. I am sad for her. Of course, she is not aware that she has slipped away from us. I seem to experience my grief in surges.
Thanks to you all for posting.

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#15 of 28 Old 02-23-2010, 01:58 AM
 
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The thing is, with her living with me, I can not leave the house without her when I get home from work, so my life will only be working, and taking care of her... no more gymnastics lessons for DS, dinner with friends, etc... Going to a nursing home is my mothers biggest fear too, but I think that if she were normal, she would never want to be such a huge burden on my family. I try to remind myself of that when I start to feel guilty about sending her to assisted living, and it does help.
My mom's Alzheimer's also started young. She was 65 when I started seeing signs. We had my mom with us for about a week over Christmas break and it was so much work. I also could not leave the house without her, so that meant I needed someone to babysit her so that I could do errands. Between her and the kids, dh and I were constantly caring for someone day and night.

My mom was also afraid of going into a nursing home and resisted assisted living even when she was living with my dad. After my dad broke his hip in Dec. and she spent that week with us, I found her a residential care home. She didn't like it at first, but now she's so comfortable and happy there. She's well cared for and I visit her on the weekends.

I know it's hard not to feel guilty, but finding an alternate living situation for your mom is best for you and her. Do research to see what kind of facility would be best for her. Sometimes the bigger assisted living facilities are not the right match. You can pm me if you want to know more about my experience.
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#16 of 28 Old 02-24-2010, 07:44 PM
 
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My mom is currently 65 years old, and has been living in a nursing home for 13 years due to bipolar disorder and early onset dementia. It was a very difficult decision for my older siblings to make (I was a minor at the time) and we are all still struggling to make peace with it. My mom has been out of my life...well, my whole life. But much like you, her home is an hour and fifteen minutes away and I struggle with having her so close and yet so very, very far away at the same time. My mom may recognize us most days, but has no desire to initiate or continue conversations. She is literally so medicated to control her mental cycles, it's like she doesn't even have a mental presence at all. It's hard not having her be part of my life, and I can imagine you are very hungry for your mom's presence during your pregnancy. Many, many hugs to you

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#17 of 28 Old 03-21-2010, 02:53 PM
 
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*Hugs* to everyone....It is a hard thing to go through. My grandma (92) just got moved into a "Retirement Home" (Different than a nursing home) She has dementia also. She lived alone on a huge farm, and started to hear voices, kids etc....Upstairs (where nobody ever goes) she was calling 911 fairly often, to have to police go up and get the "kids" out. It got to the point where she called 911, 12 times in 24 hours, to have the police come and check the upstairs for her. The pilice took custody of her that time, and told us we either put her somewhere to get the help she needed, or they would give custody of her to the state & they would decide where she went.... She was also seeing a white bull, over in the barn. She started cooking dinner for ppl, whom she thought were in her house, but in reality was only her there.

Anyhow, we got her moved into a really nice place (after being evaluated at a psych ward for a week etc....) put her on new meds for the progress of dementia etc. She is still a little upset with us for, as she says "Tossing her out of her home" but she seems to be adjusting somewhat anyhow. I dunno, she is still "with it" in the head, andou 95% of the time, will carry on conversations, remembers a whole lot about pretty much everything, but slips sometimes.

I work in a nursing home. We have the dementia/altzhimers floor, which I wanted to comment on, as far as the aggression etc.

Some of the ppl we care for are still very loving, sweet, quiet, but we have a few who are physically and verbally abusive on a daily basis. So Im not sure how that goes, as far as maybe it affecting certain ppl differently than others.

Either way, it is such a hard thing to deal with....

I do find it extremely interesting, how they revert back to the younger days. Sometimes I think I would love to be in their minds for just a few minutes, to see what they see.
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#18 of 28 Old 04-09-2010, 05:58 PM
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Some of the ppl we care for are still very loving, sweet, quiet, but we have a few who are physically and verbally abusive on a daily basis. So Im not sure how that goes, as far as maybe it affecting certain ppl differently than others.


I do find it extremely interesting, how they revert back to the younger days. Sometimes I think I would love to be in their minds for just a few minutes, to see what they see.
Count my mom as one of those aggressive types - the was kicked out of assisted living for being violent a few weeks ago.

I would never never never want to be in her mind. This disease does horrible and cruel things to people. I would not want it for a second.

They revert back to their younger days because they forget things in reverse order... that is why my mom thinks I am her sister - because mom thinks she is 30, and her sister is about my age in my mom's 30-year old brain... and since she is only 30 she can not possibly have a child who is my age.

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#19 of 28 Old 04-12-2010, 05:55 PM - Thread Starter
 
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Sometimes I get stuck on the bad days. Mom's been so depressed. I brought our new baby to meet gramma. It was precious. As soon as she saw him she was in love. I am not sure she remembered exactly who we were. But she knew her much longed for family had finally come to be with her. So sad, and yet glad.

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#20 of 28 Old 04-21-2010, 02:44 PM
 
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s My grandma is dieing... my dad moved up to his parents' house to help his dad take care of her almost 2 wks ago now... She's more-or-less stopped eating/drinking over the past few weeks, so nobody's sure how much longer she'll be around for. Its very sad... I've made a concerted effort to get up there and take pictures of her with my boys, so that they at least have a few pictures of them with their great grandma, you know?. Part of me is anxious for her to die... I'll be very sad, but at the same time, relief, you know? That she's done suffering... that nobody has to worry about her anymore. Its callous, I know... but in many ways I hope she passes on quickly... for her sake and for my grandpa, and my dad and everyone else' sake.
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#21 of 28 Old 04-21-2010, 03:04 PM
 
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I have no wise words of wisdom, but have been in a similar situation. *I* use to care for partners gma. At that time, she was 101 yrs old. Completely immobile. I was the one who bathed her, put her into her chair, put her on the potty and wiped her bottom, made her food, EVERYTHING. After a year of her care, I had enough, I was wearing thin. She did not have an ounce of respect, not one ounce of appreciation for anything anyone did for her. I took on this responsibility because she was my partners grandmother, because she wanted to remain living in HER HOME, did not want to go to a nursing home.

Finally, when it got to the point that she became physically violent towards me and the $ we were using to bring in outside care for her was completely gone, we asked other family for help. That was a HUGE mistake on our part.

With her dementia in full force, the other family came in, drilled into her head that we 'stole all of her money' and that *I* had been abusing her all the time. They tried to bring criminal charges against me and my partner. Of course, the LEO flat out told them there was NOTHING they could do becuase we did NOTHING wrong.

The other family who were NOWHERE to be found for the 5 years my partner cared for that woman walked in, moved her out of her home and BAM she was gone.
We have no idea where she is, no idea if she is still alive or not. This all happened in the beginning of 2009.


This is not your situation, but I have 100% sympathy with what you are going through. For many months after the other family came in, I was sick with remorse. I was hurt at the lies they made up. I was resentful and angry with gma for saying that my partner and I did these horrible things that were being drilled into her head.

It is horrible to watch a family member deteriorate. I was not even related to gma, yet I loved her as my own. I cared for her as my own. It was a huge slap in the face for others to make accusations that what my partner and I did for her was 'not good enough'.

Sorry, I did not mean to ramble on about what I went through, but guess I did need to get it out. Have not talked about her or what happened since it did happen.

Regardless, Know what you are doing is best. Know that YOU have to take care of YOU before you will ever be any good to her or anyone else who may need you!
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#22 of 28 Old 04-22-2010, 02:39 PM
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. Part of me is anxious for her to die... I'll be very sad, but at the same time, relief, you know? That she's done suffering... that nobody has to worry about her anymore. Its callous, I know... but in many ways I hope she passes on quickly... for her sake and for my grandpa, and my dad and everyone else' sake.
I know exactly how you feel. I hope mom dies of a heart attack or something else soon, because she could hang on for years and years with this horrible disease.

Tummy - what you went through is very common. I am sorry. I am constantly getting accused of stealing my mom's money by my sister, who has never visited my mom and has no idea the condition that she is in.

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#23 of 28 Old 04-22-2010, 05:48 PM - Thread Starter
 
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Sounds like a really horrible experiences (being accused of abuse). I am sorry to hear of the drama you all have gone through.

Our family is very sad to think mom may live for years in this state. I can relate to wanting to see her suffering end. I always feel bad for wishing her life away. I guess cause it makes me feel selfish. I am sure you know how it is though, never feeling like you can do enough. I pray you all peace.

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#24 of 28 Old 04-22-2010, 06:10 PM
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Yea, there is a lot of guilt that comes with this. I was up half the night last night feeling terrable because in order to get my mom to assisted living they had to give her some pretty strong drugs, which really zonk her out. I am feeling really guilty that I am somehow making her condition worse by giving her the drugs...

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#25 of 28 Old 05-26-2010, 10:53 AM - Thread Starter
 
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to all of you going through this kind of loss. I am posting to ask those of you with a loved one in a nursing home, if you have ever tried taking him/her outside? Mom has lost her mobility, but they can use "the crane" to get her out of bed and in a wheel chair. I want so much for her to feel a summer breeze or hear a song bird.
My sisters and I go back and forth on this. She has come a long way in the last few months and considering her situation she is doing well. I will admit I pray she will be spared this life of dispair someday soon. The quality of these final days with her, are very much our concern. It's like she is in prison. That is how she feels. Our hearts are heavy.
Would any taste of freedom intensify her feelings of confinement? Have you tried leaving the building? What can I expect?
This sucks.

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#26 of 28 Old 05-26-2010, 12:15 PM
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This was really hard for us at first. Mom is in assisted living now and doing very well. The first time I took her out was to the doctor, since I am still responsible for taking her (although I could pay them to take her). Since then I have taken her out a lot - at least once a week. I was worried she would freak out when trying to take her back (she still does not realize that she is there to live - she thinks she still lives in her home, sometimes she thinks she works there, or that her parents kicked her out and she is only staying there for a few weeks). Every time I take her back, I have to make up an excuse in order to get her back in (I have to go to work but I will be back later... DS is sick and has a doctor appointment and I can't drive you home now... etc..). She forgets within 10 minutes, so I can just use the same excuse next time. Her short-term memory is gone. It has helped to take her back just before a meal, so I could say, hey, it is lunch time, why don't you sit down (that way I can leave without her trying to follow me out the door). She often does not realize that she is locked in there, but if I leave and she realizes that the door is locked after me and she can't go out too, she gets aggitated.

I have not been brave enough to take her to my home, because we now take care of her dog there, and have quite a bit of her stuff (we are working on clearing out her house), so I am afraid that she will see the dog and her stuff and freak out. However, just to be able to take her to a park (with DS), or an antique store, or the grocery store is very fulfilling for her, and I think it really improves her quality of life (makes her feel like less of a prisoner). I am hoping to be able to take her home for a day in a month or so.

Before you take her out, I would have a plan for getting her back in, if you are worried about her refusing to go. Also, talk to the nurse to see if she is ready. We waited a few weeks before taking her out for the first time. I recommend taking baby steps, y/k? Do you have a problem lieing to her? I have learned that it is really the most compassionate thing to do in my mom's case. Maybe just go for a short trip to the park or a short drive just to see how she is going to react. My mom is still mobile though, so the logistics may be tougher for you.

I also hope that my mom will be spared this life of dispair soon.

Mom to DS 12/07 and DD 11/13, plus a bunch of chickens, dogs, and cats.

Moving past many years of infertility and always thinking of my friends in the infertility forums.

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#27 of 28 Old 11-09-2010, 10:48 AM - Thread Starter
 
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Hi there.I hope that you all are doing okay. The holidays are fast approaching. Here for advice/support again. So my family is not coping quite so well. Dad has decided he "upsets" mom. So he won't visit her. She waits everyday at the window for him. She misses us all so much. However she is often serene when I see her. She is a new woman, I love her so much. Still dad won't attend family gatherings that include her. Most recently a few months ago when our family hada cook out at the home. He is suffering. This has the family sort of estranged. Personally, I am having trouble making time to get down there, but she is in my heart. I'll get there for the first time in months, this weekend. Anyway, for those voices of experience, any tips for easing the pain of our second holiday season? This time with mom and without dad?

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#28 of 28 Old 11-10-2010, 05:03 PM
 
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I don't have any specific advice, just lots of hugs for you. My dad has alzheimers and its' not too bad yet but I dread where this road is going to take us as  a family. It sounds like your dad is really struggling with watching what is going on with your mom, and he may be right in that your mom seeing your dad is upsetting for her. Depending on how bad the dementia is and which part of the brain it's located in, your mom may not recognize your dad when she sees him in person, or she may not know how to react to him or have a stable relationship with him anymore. I think irregardless of what your dad decides to do, he definitely needs to seek help with this. Hopefully he lives in a town that has a caregivers support group that he can attend. It may be helpful and relief to him to be able to speak with other people who are where he is now and help him process these emotions. (((((((((((HUGS)))))))))) to you. I hope the holidays are as peaceful as they can possibly be for all of your family.


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