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Anyone successfully transition parent from IL/AL to memory care?

Shambo — Fri, 05 Sep 2008 05:39:02 GMT

I'm just thinking ahead regarding my 93 year old mother. She hasn't been officially diagnosed with dementia yet just because she hasn't had to go to the doctor for quite a while. But she's due for a checkup and I'm pretty sure the doctor will finally give her that diagnosis. Right now she's in a very nice assisted living facility. But I know once she's diagnosed with dementia, they will move her to their memory care unit.

I've toured the special care unit a couple of times and talked with its director, all in anticipation of the eventual diagnosis. The director told me they could do a transitional move. She'd spend the days in the memory care wing, take her meals there and join in the activities, and then be escorted back to her AL apartment for the night.

Has anyone had experience with this kind of situation? It's not quite the same as being moved to a NH but slightly similar. The biggest difference is that there isn't any obvious physical problem, like a broken hip or recovering from surgery. I know every move and change is going to be traumatic, and I know that eventually she'll need to be placed in the memory care unit. Maybe even sooner than I think. If you have any advice or suggestions on making the move less stressful for her, I'd appreciate your input. Thanks!

Allowing UTI to run its course

Paula — Fri, 05 Sep 2008 05:08:51 GMT

I am new to this group. I have a 96-yr-old aunt who has been on a PEG (feeding tube) for the past 4 years. She had been an incredibly lively and active person until the PEG tube was inserted. She had developed numerous problems with her esophagus which were preventing her from keeping food down, drinking, and taking her heart and other meds. She hid this fact from me for quite some time, and by the time I figured it out, her esophagus was beyond repair. Within a couple of months of inserting the PEG tube, she took a severe and immediate decline: depression, progressing dementia. She is now in a nursing home: unable to speak, unable to walk, and my assessment is that her quality of life is extremely poor. I do not know what her wishes are regarding continuing to live - she always refused to talk about it with me or others. (I am PoA.) On the other hand, she still knows me and other family members, and she lights up when we come to visit her.

Now she has yet another Urinary Tract Infection (UTI) and at this point in time I am weighing the pros and cons of not treating it. If we leave it untreated, would she endure discomfort or pain? Could the discomfort or pain be alleviated with palliative care? Would it be appropriate to allow this infection to take its course?

I would welcome any comments from people who have had experience in this area. Her doctor and other docs in the clinic have been distinctly unhelpful. I am in the process of seeking the advice of a local palliative care nurse, as well.

Thank you for your consideration of this post and I look forward to hearing back from you.

Sincerely,
Paula

Don't know what to do!

Rachel — Fri, 05 Sep 2008 03:22:23 GMT

Hi all,

i have not posted for some time. But tonight, well...I can't take anymore and don't know what to do. I actually yelled at my 94 year old mother tonight and night before last. I told her she was pushing me away and driving me CRAZY! I am only caregiver. I have 2 young children. Am in a "helping" professions and work minimal 55 hours. I am completely given out, angry, and NOT compassionate. Yes, my mother has some memory problems.

Here's the problem for today....although it is just about EVERY day...and I am fed up! Today she called me 31 times on my cell and work phone!!!!!   I did not even check my home answering machine. My husband said she called. I
DO NOT want to know how many times!!!

I've tried everything! My cell phone minutes are used and I am know Over $30.00 over usual bill because of her calls. The worst part though is that it is so disruptive to me. I turn off ringers. But I have to check messages at work and go through deleting hers. The repetion of hearing the ALMOST SAME message is TOTURE! I feel like I am being stalked!   And harrassed!

I am seriously considering having my home phone disconnected and cell phone number changed (not give it to her). I cant bring myself to do away with her phone although that is probably what should happen.

I really though she was ill today. Both times I called, she was not in apartment (SLF). After 10 1/2 hour day, she caught me at home and said she didn't want anything and then switched to wanting to move! I am soooo
sick of it! It is either she wants more tylenol because of headache, or her legs hurt and she needs to go to a doctor or she wants to move from SLF.
ALWAYS the same. I wish she could look forward to talking with me each evening. We have always been close, but now, I just feel anger!

I really don't know what to do about calls. Resent having to change cell number and disconnect home phone. Talking to her does NO good. She does what she wants at her convenience....not mine. I told her this.

Oh, I could write pages venting. But really, my feelings from all this stress is bothering me! I want out of this nightmare. Mom has no one else. Im stuck, yet, I don't want to talk with her or see her until she shows a little respect. I think she has early dementia, but really do feel she can make changes.   Thanks for listening. Any suggestions?

Poop - a dialogue in one act

rosie — Thur, 04 Sep 2008 22:36:02 GMT

Me - "Dad - there is poo.On the toilet floor.It has been walked in."
Dad(incredulous) - "POO???"
Me - "Yes, poo. I will clean it up.You will have to change your clothes and have a bath."
Dad - "But how could that happen?"
Me - "Weelllll - you've dropped a bit of poo, and walked in it."
Dad - "And why would it be me?"
Me - "I hope you're not suggesting that Sis(who lives in his house)did it? 49 year olds do not usually have poo accidents!"
Dad - "I'm not suggesting anything. I don't see how it could happen!"
Me - "Well, I'm not making this up.Do you think I'm making this up? I have to clean it now."
Dad - "I don't suggest you made it up.I don't see how it could happen.And why would it be me?"
Me "It did.It is there.I have a bucket of boiling water and disinfectant, not just because I like to wash floors."
Dad - "Well I don't understand it."
Me - "That's fine Dad. I'll get the bathroom and fresh clothes ready, ok? Feel up to a bath? Let's have a nice bath then ok???"
Dad - "Yes, I will.I don't understand it..."

.......now I can't get the smell of disinfectant off my hands........

Paranoia (what's real and what's not)

Angie — Thur, 04 Sep 2008 18:28:21 GMT

Hello I need a bit of help. First off I took care of both of my parents for almost 5yrs prior to their passing so I am not really up for this new thing.

My godmother is turning 81 on sept 5 and up to a few weeks ago had seemed fine, but it seems she thinks someone is coming into her house when she is not there and taking things. She lives in a 4flat bldg. Now, she only goes to the store and to the doctor mostly. She has a gated door on the back plus the regular door with two locks. On the front door she has a deadbolt lock and also an alarm system. The person she believes is doing the entering does work in the bldg., but has no access key to any of the apartments. I have let her talk to the police and they have no answers for her, and she wants to confront the landlord who unfortunately, is a relative of mine and lives across the hall from her. I do not want to say she is lying, as she thinks that is what people think as she is a senior, or that she is delusional. But she is convinced this person is methodically going through her things and taking stuff. She has given me things that she thinks he may take to keep for her, but I am at my wits end as to what to do. She was very instrumental in helping me cope when I cared for my parents when no-one else would. But, again my journey with my parents ended in 2002 when my mom passed away and I am not sure nor do I believe I am ready to work this out as I have my own issues and concerns.

She also has a sister who is a doctor but she does not want to involve her in her affairs as she feels the only thing her sister cares about are her patients. She wants to go to the police again but I am not sure she realizes the magnitude of that type of action since there would have to be an investigation of all parties involved. Does anyone else have this type of
issue.

Other than this issue she seems perfectly fine.

Mom delima

Britt — Thur, 04 Sep 2008 16:38:29 GMT

This is my first ever chat so I hope I am doing this the right way. A few months ago my very healthy father was diagnosed with pancreatic cancer and died two months later. For the past three years he and I have cared for my mother after they moved in with me when Mom experienced several mini strokes within a 6 month time period, each stroke has taken another chunk out of her. She is also diabetic and has significant health issues. Well, as a result of my father's death and my mothers daily needs I have had to resign from my job to care for her. The type of work I did was far too demanding and unpredictable to work out at this point in my life.

I love my mother dearly but miss my freedom and my work life. I am also self-employed and will be taking Mom to work with me each day. She is excited and it will save a lot of money but I am feeling like the walls are caving in at times. I miss the daily people contact I had in my old job. She is wonderful and tries hard not to put more on me. It is not her it is me.

I am torn between feeling resentful towards my siblings for not offering to help in any way and also glad that she is with me rather than one of my crazy siblings who keep eying her assets and down play her special needs. Mom and I get along very well so I am very blessed in that way. Both my parents have lived with me for the past 3 years so it is not such a big adjustment. I have already been doing all the house work and managing her doctor appts and being there with her, setting up her meds weekly etc. I feel so guilty when I am not meeting her social needs now.

Sometimes I think she is handling my Dad's loss better emotionally than I am. I took him to all his appointments and stayed with him in the hospital helped him with his daily care. Mom was there emotionally for him because she wasn't able to physically help due to her limitations. Has anyone else experience some of these feelings? If so any words of wisdom?

Kolleen......where are you?

Molly-Tx — Thur, 04 Sep 2008 15:05:40 GMT

Just checking on you.

Hurricane IKE...Yipes!

Moly-Tx — Thur, 04 Sep 2008 10:14:53 GMT

Hurricane Ike

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Lump in the throat?

ttsd — Thur, 04 Sep 2008 05:25:08 GMT

Anybody had this feeling? I had and endoscopy and an ENT dis a scope and nothing found...also an ultrasound on my thyroid, blood teats... Nothing. I tried prilosec and tums...it comes and goes, often more noticable with stress and on an empty stomach. I am so tired of drs. and feeling like a hypochondriac.

Recovering from or at least trying to.......

Gia — Thur, 04 Sep 2008 02:35:21 GMT

Mother's Day weekend I decided to not be here any longer. Was saved and placed as 5150 for 4 days. Learned a lot since then and am still researching what I have learned so far. Was very hard to realize that your father, whom commit ed suicide December 2006, and you were just alike. Both of us were perfect victims for the N. All we all want and will always want is to be loved like we love. My father and I had/have unconditional love for whom we are with and of course the children and grandchildren. My father lived a horrible life with my mom. His whole life was the "N" word. His mother and then his wife. What was awful was to discover that my mom was the main cause of my father's downfall. He had a stroke and she made him feel like such a burden for 2 years. He couldn't take it anymore. I hated and was extremely him for doing it at first but way understand since I was in the same boat as him but obviously still here. What is tough is that also the love of my life is just like my mother but much better and more intelligent. Of course, more than completely, love him more than life itself and can not imagine my life without him. Can't imagine my life with out pain if I stay. Occurring much more frequently now. Know I have to go but at least this is familiar territory. What is on the other side??? No one knows but it is the scariest place to even try to imagine because you have no idea what, who or anything it is. What is the other side of not having any "N" word in your life. that is the only life you know. How long does it take to know it is ok to dance if you want to or be happy doing what you want to do or be manipulated into what they want you to do anyway by knowing what buttons to push to get the job done their way. What is happiness???? Sounds like a simple question to answer but to us children, spouses, etc. of "N" persons in our world, it is one of the most difficult questions to answer because I absolutely have no idea what that is. I have my happy places for sure. We all do, but personally I can not go to my happy places all the time/ My happy places are all too much fun.

Feelings get hurt, feathers get ruffled

JAH — Thur, 04 Sep 2008 00:31:24 GMT

I am trying to speak to how it is, that feelings get hurt when differing opinions are given, or something someone types in is taken to heart. Those of us who write and read on message boards should realize what we type and what others read may be two different things, or maybe exactly how it was taken or what was meant by our words. What I am trying to say is sometimes words can come across in writing very differently than they are meant, as well as being very succinct and precise. I have seen instances where people get hurt and I think we all need to take what others say and what we read with the proverbial grain of salt. We are all on this board to share and learn, we are here with a common bond caring for an elder, and we all need each other more than we could ever realize. It does not matter if we agree, it does not matter if we like the same people, it doesn't matter that we have different belief religious or otherwise. None of that matters, what matters is we should learn from each other, we should read and say what we feel without malice. There should be sort of guidelines for reading and posting on message boards. Stick to the topic, don't accuse, don't take offense, realize everyone has and is entitled to their opinion and you don't have to agree or disagree. I just though these gentle reminders might make this board a better place to meet at and maybe will help people who have some communication problems, either writing or reading to take what you can from this board and leave the rest. I think we all can contribute to keep this a great message board, if we re-read what we write, before we hit send, don't take offense, everyone is entitled to their opinion, try not to say things that may be construed as putting down another poster, stay on this board and learn and teach. I

Could use some prayers, good thoughts, whatever ya got. :)

Joani — Thur, 04 Sep 2008 00:13:37 GMT

Taking Mama Dot to the oncologist tomorrow. She was dx'ed with small-cell lung cancer back in Feb of 2006. She was very fortunate to be dx'ed after a lobectomy (apparently when small-cell is involved, surgeons don't want to touch you). Six months of chemo and she's been in remission ever since.

Last Nov was when she had the fall in her apartment that led us on a wild ride of hospitals, rehabs, NH's, more hospitals, rehabs and finally AL, but one more hospital and then a rehab and finally back at the AL. Lots of mental meandering and head-butting and me wanting to run away to join a carnival, but things have settled down. She's happy at the AL. She's made friends, she goes out, she's the sing-a-long leader with another gal, heck, I think she's got a beau or two! She's happier than I've seen her in years and years.

So, last month the oncologist mentions that the last PET ct taken on Mom in April showed a little activity in the chest and orders another one to be taken (we did that last week). He also mentions that should there be more activity on this one, we'll do chemo. We'll get the results tomorrow. I know that this is all in God's hands, but I can't help but be a little dang scared.

Can AL throw her out on the street?

SheilaJ — Wed, 03 Sep 2008 22:17:54 GMT

Wondering... If AL throws MIL out for repeatedly violating the smoking rules, I assume they can't just throw her out on the street? We are not about to drop everything on a moment's notice to drive up there to deal with her. She has no house keys (we have them). The doctor has said she is unsafe to live alone. No one will take her into their home.

So, what then? What are the legal obligations of the AL and of us? Is the AL obligated to hold her until a suitable place can be found? We're tired of looking for suitable places, nothing is going to "suit" MIL anyway.

Or do we just FedEx the house keys, tell AL to hire MIL a moving company, and we'll deal with her later, when we can face it without screaming? Meanwhile, we hope she doesn't fall down the stairs, and there's no one to get her groceries or meds for her.

So, it's "Tag - you're it!" But just WHO is IT? Help!

Do you remember the first thing your parent did that made you think dementia?

Pured Prodigal — Wed, 03 Sep 2008 21:03:36 GMT

My mom is doing something new and disturbing (even for her). She keeps referring to money in the wrong denominations. She asked what her house was worth and I showed her a copy of an appraisal for $100,000. She looked at it and said, "So my house is worth $100." Confused I said "Uh, $100,000." Again, she said, "$100" and seemed to be getting agitated. So I gently asked if she was kidding around with me and did she understand the difference between $100 and $100,000? She just stared out the window and wouldn't answer me. Not sure whether to be concerned. Does this sound familiar to anyone?

Moving Mom into our home or AL.

Doug — Wed, 03 Sep 2008 16:19:35 GMT

Hi I wonder if some here has gone through what we are and can offer some advice. My father(91) just passed after a rather short return of his cancer. He died at home with my wife and I caring for him and my brother trying to get retired so he could help.

Soon after his death my brother said he wanted to move mom into a very good Assisting Living facility 14 miles from where there family home is. My brother lives next to the family home and I live 250 miles away.

Within three weeks of dad dying, mom (89) had been moved and my wife and I were a little stunned how fast it went. We wanted to take her home with us but my brother wanted her to do AL. (We both are retired (56 and 51) she because she has MS and I just retired a year ago). My wifes MS is currently in remission and she is and continues to do well.

My mom is I assume going through what most do that are thrust into this situation. She cries and wants to die and be with dad etc. She is willing to move into our home where we can care for her. However my brother wants her to stay there. He and his wife have agreed to allow mom to try living with us after a month has passed at the AL.

My mom is sweet, and easy to care for. She has dementia but can bathe herself, make and get her coffee, knows who we all are but cant fully care for herself, bills shopping etc.

She has said to me if I had been asked where I wanted to live before I came to the AL and had a choice of AL our your house I would have chosen your house.

The AL my mom is in as I said very nice. It however does not encourage her to get out. She eats breakfast then watches TV, eats Lunch then TV, Dinner then TV. If she came to live with us she would have church, local family outings, sporting events at school, (she loves sports) lunch on Tuesday with the other church ladies etc.

We feel she would be much happier here then in a facility but many of you have said different. Have any of you done this and found it best for your elderly parent and yourself.

Thanks