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 Mom's recurring lament? 
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Joined: Tue May 18, 2010 9:57 am
Posts: 4
Location: Massachusetts and Texas
Post Mom's recurring lament?
The single most difficult issue I now have to deal with on a daily basis now that my mom is a resident in the secure wing of a nursing home (except for the sadness that she must be there at all) is that every single time I visit, she insists that she will be going home with me. She refuses to take part in any of the daily activities offered, instead spending her days packing her belongings over and over again, plus looking out the windows to see if I've arrived yet. If I do not visit on any given day, the nursing home will call me for her in the evening, and then put her on the phone. She will then ask plaintively that I come to pick her up immediately.

Her doctors tell me that if I should inform her that it will not be possible for her to return home, it will make treating her very much more difficult for them. I do wish that I could do so in the hope that she might be able to enjoy the many activities this facility offers. At the same time, I fear that if she were told this, she would give up all hope and simply "shut down". How do y'all deal with this?

I've written extensively about my experiences in dealing with mom's difficulties at the website link listed below.


http://www.mydimentiachronicle.com


Tue May 25, 2010 8:57 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Is your mom completely mobile? When my dad had extremely limited mobility last year and kept wanting to get out of the rehab center and moved to the ALF, I kept telling him he had to work really hard in PT so he could walk with a walker again. He did work really hard, so that kept his hopes up but he also knew he couldn't go back home. If she has limited mobility, which is declining, you could set some sort of goals that sound reasonable, but they aren't really given her situation.
Or, when trying to talk my dad into moving to the ALF last spring, I reminded him that he was falling a lot and that some day he'd fall, not have his cell phone with him and he could be on the floor for a day or so with no way to get help, and wouldn't that be scary? The reality of that got to him so he decided moving to an ALF would be preferable to lying on the floor for hours or a day or two.
If she has no falling or mobility issues, neither of those will be helpful.
You may just need to keep it simple and say "Your family needs for you to be in a safe place, and your home is not a safe place for you right now." Don't argue, don't discuss, just be strong and know you are doing the right thing even though she will most likely be very angry with you.
My dad is in a beautiful place with lots of activities and he has to be forced to join any of them, even the ice cream social Wed. afternoons. Some people, like my dad, never will adjust and that is just the way it is no matter what I, his friends or anyone else tries to get him involved in.
I wish you luck. It isn't easy but it's good you belong to this forum! Lynn


Tue May 25, 2010 1:26 pm
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Joined: Sat Mar 27, 2010 6:15 am
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Location: USA
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My dad too will never be happy at the nursing facility where he lives. I don't blame him really. He can't see so he can't read or anything.

I think that someone will never adjust if they continue to believe they are just waiting to go home. It seems very strange that the doctors would put you in the position of lying and pretending.

Use your own judgement - but for your mom to adapt I would think she needs to know the truth. She needs to know so she will start thinking in terms of making a life where she is at.

I always tried to help my dad by making plans for him to look forward to. A trip to the park, out to eat at Cracker Barrel etc.. every few weeks. Now that he is off his feet because of Diabetes sores I can't even do that!

It is hard to know what to do. My dad has completely given up I think. He was doing okay off and on. But then they doped him with too many meds and put his shoes on wrong and he got sores on his feet which are now infected. Well that did it and now my dad has been off his feet for a 3 months and has really lost hope.

I keep trying to fix things and then something else happens.


Tue May 25, 2010 7:27 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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I wonder if hope is a concept that our LOs can even grasp most of the time. Whenever I talk with my dad I ask "how's it going?" or something fairly inocuous. He always responds "terrible" and no matter what it is, there is always something to complain about. He is frustrated, depressed and angry, period.
He did tell his CNPs a couple of weeks ago that he is getting better and will be going home in 3 weeks. So, I guess he is has hope or just delusional thinking! Of course, he now thinks "home" is the town where he was born and hasn't lived in 72 years!!! And, he tells people that I will be taking him there soon to work on his Christmas cards.
Drs. don't always know what is best for our LOs and I dare say that if they were dealing with a LO with dementia, they'd be at a loss for what to do most of the time and feel just as helpless and frustrated as the rest of us.


Tue May 25, 2010 8:07 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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My husband wants to go home every evening. And he IS home. :(


Tue May 25, 2010 9:07 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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This going home thing is so interesting, sad, but interesting. It seems like so many people have this experience, whether they are living at home, in a facility or whatever. Amazing that I've never in my life heard my dad refer to where he grew up as "home" but now he does and he thinks that's where his house is. He gets one of the caregivers mixed up with the housekeeper we had for many years, and every few days he tells her he is going to drive her to his house so she can clean it for him.


Tue May 25, 2010 9:14 pm
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Joined: Sun Oct 04, 2009 10:18 am
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Location: Washington State
Post On the Dr.'s Response
I heard someone from the health care world talk recently about communicating with Dr.'s. What she said is that the easiest solution for the Dr. is not always the easiest solution for the patient and their family. They have a different perspective...their own. Her point was that it is important to ask questions. Like..."is there another way", or "what do you mean by that" or "what are the side effects", or "what is involved in recuperation".

The Dr. may operate and go home and be done. The patient and their family will live with the recuperation period and the results.

From my own perspective, I'm a lousy liar and I know it. The truth is better for me. If it were my Mom, I would tell her what Lynn suggested, "I don't think it is safe for you at home right now". I would give her a chance to adjust.


Tue May 25, 2010 10:45 pm
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Joined: Fri May 29, 2009 10:06 am
Posts: 42
Post 
Jeff,
My Mum too is in a nursing home for the past 18 months. She was exactly the same as that in the beginning too, every time I went to leave her after my visit, she would begin to pack and organise herself to come home with me. This was very upsetting for her (and for me!!), but eventually she settled down and never looks to go home now, actually she thinks she is at home. She doesn't walk anymore, cannot eat or drink unaided, is still not fully incontenent (but getting there). This is a very cruel disease, and even if you have to white lie a lot of the time, well then so be it. Blame the doctor, tell your loved one that the doctor makes the decisions, and that is why they are not allowed home. Maybe you should not visit every day, and then they may take part in some of the activities, my Mum never took part in any activities (even when she was able to).
Time really does help, they do adjust eventually.
Keep the spirits up.
Annie41.


Wed May 26, 2010 5:29 am
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Joined: Tue May 18, 2010 9:57 am
Posts: 4
Location: Massachusetts and Texas
Post Mom still wants to leave!
Ok, It's now almost July, and mom still wants to 'go home'. Her doctors still are insisting that if I tell mom that there is no chance that she will ever be able to do so, it will make treating her very difficult. I tend to agree with them. I hate lying to her and making up excuses for why it is impossible on any given day, but I fear that telling her the truth would cause her to give up entirely, so I just continue to try changing the subject.
Off with her to Mass General Hospital tomorrow for yet another visit to the Memory Disorders Unit, but I do not expect much to come out of it at this point. Mom is now in a wheelchair full time. The physical therapist tells me she is physically capable of using her walker, but her mind is not.[/b ]http://www.mydimentiachronicle.com [b]details our journey thus far.


Mon Jun 28, 2010 1:25 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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This is so true about their loss of mobility! My husband's muscles are able but his mind can no longer reliably control them now and he quite literally forgets how to walk or even stand sometimes.

What kind of w/c does your mother have? I want to order a 'transport chair' for my husband because it's less than 20 lbs. and I would have no trouble folding it and putting it into the back of my Honda CRV. He wouldn't be able to wheel one himself, anyway, but someone said they aren't good for sitting in. I'm thinking he would only sit in one for meals and to get to his bed, bath, etc. but not any great length of time, so I thought a transport chair with the handles on the back and footrests, along with a comfortable seat pad would be good. Any feedback on this issue?

_________________
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.


Mon Jun 28, 2010 2:00 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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Jeff -
Many call this a "therapeutic lie." I know some healthcare professionals who give "permission" to the family to tell a "therapeutic lie." Some of us do need permission!
Robin


Mon Jun 28, 2010 2:19 pm
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Joined: Tue May 18, 2010 9:57 am
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Location: Massachusetts and Texas
Post hi mock turtle
Sorry, but I can't help with wheechair selection. On the occasions when we need one, I have just borrowed the one mom uses at the nursing home. Luckily, I may be 62, but still relatively fit,
Jeff :)


Mon Jun 28, 2010 2:32 pm
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Joined: Thu Jan 28, 2010 4:42 pm
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Location: Florida
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Mockturtle,
We have used a transport chair for mom for the past 2 yrs and I've loved it as it's so lightweight and fortunately, someone gave it to me. When she was still able to stand a little and strong enough to go out places in the car (a year ago), it was so easy for me to get the chair in and out of the vehicle. Now, she can't stand at all and is with hospice. I now have to use a hoyer lift to transport her to and from the bed to the wheelchair or recliner. We live across the street from our church so most Sundays I can "wheel" her to church. The problem I'm now having with the transport chair is this--she has trouble keeping her left leg bent down enough to where the foot will stay on the pedal. That makes wheeling her down the road to church very difficult and dangerous. If we had a wheelchair with adjustable leg rests, we could simply elevate the leg so that the foot would be on the rest. Also, the circulation in her feet is very poor and if she sits more than 20 minutes with her legs down, they turn black so I have to prop up her legs both at home and at church (which isn't easy). Again, if we had a wheelchair with adjustable leg rests, we could just simply adjust them to keep the legs elevated. As far as "comfort", we have an air pocket cushion, which is supposed to be about the best thing to sit on but she's so thin, her bottom still gets sore if she sits more than about 30 min-an hour. Hospice had brought me a gel cushion, but it was too "slick" and during one meal, she almost slid out of the chair--I barely caught her! Of course, I should have had the seatbelt buckled (which I had to buy the seatbelt and put it on the chair). Not all wheelchairs have adjustable leg rests but I have asked our hospice to see if they can get one for her. Good luck on making a decision.


Mon Jun 28, 2010 10:29 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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My dad has a gel cushion on his wheelchair and he slips out every once in a while, like 3 days ago! I think I'll get some of that squishy, thin, rubber matting I use in our RV to keep the dishes from rattling and breaking when we're driving on bumpy roads. That might work for others having this problem. I've found it at Kmart and Walmart, kitchen section. Lynn


Mon Jun 28, 2010 10:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Thanks, kitkat & Lynn. I think the transport chair I'm looking at online has adjustable foot rests. The type of pad to get is worth some extra research, it sounds like.

_________________
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.


Mon Jun 28, 2010 11:01 pm
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