more about *our* situation

funkillMay 6, 2007

I have spent the past several weeks visiting Assisted Living Facilities for my mother. I toured 10 places - that ranged from small home-style environments that cared for those that were quite diminished to large communities that care for those who are fairly independent and active. One thing I found similiar in each was the compassionate staff. I found the experience suprsingly pleasant... Though helping my mother has been difficult, I am continually amazed at the positive and helpful people I have met. Thankfully, something is positive ....

Again, my mother was recently diagnosed with dementia --- specifically, alcohol persistent dementia. She was absent throughout my life and we have never been close. My father left the marriage about 20 yrs ago. She has struggled with addictions since I was a toddler and today has no recollection of any wrong-doing (not that she ever admitted it earlier either). I have lots of animosity (sp?) and resentment - but, somehow, it seems to be less obvious now .... maybe I'm finally putting that behind me??? Anyway, petitioning for guardianship of her and putting forth such effort to plan for her future was not in my plans - and I only started this venture after realizing that, if I did not, she would be in a very, very difficult situation. I found that after I put a plan in place and started taking some action, the venture did not seem to be as great or as difficult. As I progress in this, I'm finding the guidance of others to be very helpful and encouraging.

I finally decided on a memory care center ALF for my mother. It's a medium sized facility (55 in each of two sister facilities) that offers several options for *apartments* that includes a bedroom, kitchenette (micro and small fridge) and bathroom. They also provide 3 GOOD meals a day, laundry, medication management, off-site shopping and lunches, travel to doctors, and a good bit of entertainment. Best of all, they will allow small pets! I placed a $2000 deposit for my mom to be placed on their waiting list.

Unfortunately, their nurse assessed my mom at home and believes my mother should actually be placed in their alzeimers facility because she is concerned that my mom will try to leave their standard ALF. ???? I have never been concerned about this ... but the nurse thought that since my mother does not recognize her degree of need (dementia, diabetes, hypertension, depression, etc), that she will not want to stay in their ALF. Again, I am very confused about this. So, I requested a second review. Saturday I took my mom to their facility for lunch. Mom was a bit "horrified" at being taken to an Old Folks Home (mom is just 66 yrs old), but I explained that her moving was part of the court order. After that, she was quite agreeable. We toured the place after lunch and the original nurse assessor (or whatever you call her) spoke as if they might have an open room soon. So, I'm assuming this review went well. I will call tomorrow to see if I have the right understanding.....

Again, I am pleasantly surprised at the wealth of information I have found and the degree of help I am given. Every individual I have met seems genuinely interested and offers suggestions and advice. My mother is diminished enough that it seems her nasty, critical, belitting attitude is also diminished!!! I am feeling more sorry for her future than about our past. I hope most of you also have time to reflect on this circle of life and find some comfort, somehow .....

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Getting the ball rolling can be the hardest part; once that happens it all just seems to take on a life of it's own. I'm glad you found that people are helpful and caring. We found that to be the case, too, and that really lessened the burden of being in the position of having to do these things.

I'm sure you made the right choice with the facility you chose. If the more "independent" wing doesn't work out and your Mother requires more than assisted living and is exit seeking, it is likely she would be transitioned into the dementia wing. And "going through the system" in a facility she'll become familiar with generally doesn't create the kind of anxiety that any change in routine can bring to those with dementia.

I didn't have the experience of assisted living with my Mother; she went from adult day care several days a week right into the dementia wing of a very good facility. It would have been a different story had I not been available for full time care giving - she probably would have had several good years in assisted living before ultimately being moved into the dementia wing.

I've stopped visiting everyday; can skip a couple of days without guilt. What I do find is that our time together now is quality time - much more so than when we were together 24/7. The stress is gone - the facility staff does the hard stuff and I can enjoy the good.

Role reversal and children taking care of parents is extremely difficult - it takes it's toll both emotionally and physically. And to be honest, I think it's much more of an emotional roller coaster than you could ever believe is possible. I certainly was not prepared for that aspect of it. You've been grieving for a Mother you never had all your life; and now the grieving will take a different direction - the sadness in seeing someone lose a little bit more of who they are every day. The sense of loss is truly profound.

    Bookmark   May 7, 2007 at 1:56AM
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Please keep in mind that when you are checking out a facility the staff are on there best behavior, Talk to other pts there see what they have to say, watch for call lights and how quick they are answered, each state has there own rules about how much staff they have to have, and many will just have enough to get by, Look at the other pts are they dressed right, are they clean, is there hair groomed, do you smell urine, are they gotton up and put in a chair and left in a hall way or there rooms for hours,do the pts that need help eating get it, is there food cold before they get, any place can look pretty on the outside, I worked as a cna in LT facility for 15 years and had to get out it broke my heart and haunted my dreams! If I was a writer I could write a book that would sure scare you to get old! sorry I just read so many post where the poster says, (I took a tour and it was very nice and everyone was nice and helpfull) its like buying a new car everyone is nice till you bring the car back with problems. its a money makeing bussiness frist. thanks for leting me vent.

    Bookmark   May 14, 2007 at 9:14AM
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NEVER trust a long term care facility. They'll promise you the sun, the moon, and the stars, and will fall far short; realistically, there is no way they can offer what they show in the brochures. We understood that, but basic care isn't a "frill". My present experience with Mum is complete nightmare; matching every other experience I've had with "rehabilitation facilities" and HOSPITALS. I could no longer care for her in my home. But the facility is absolutey incapable of mastering the simple techniques required to maintain her urostomy. My brother and I have offered our assistance... no one wants to admit they don't know what they're doing... they don't want to contact an ostomy nurse, either... what a surprise!

They washed her $4000 hearing aids last week. They lost her cane and now insist she use a walker (she was negotiating a full flight of stairs and walking unassisted the week before she was admitted). I'm quarterbacking the replacent of the hearing aids now. As well as drafting letters about the lack of appropriate care for an urostomy patient in their facility. Copies will go to the director, her boss, the board of directors, and our attorney. Another copy will go to the ward nurses along with all the requisite information from the urologist, the ostomy nurse, and the representative from ConvaTec. I will send them with a receipt to make sure they were received.

NEVER, EVER trust what they tell you, if your loved one has "special" needs. We did our homework... and they've not held up their end of the bargain. Good thing we've dropped in unexpectedly at wildly random times... . You ought to see them blanche and jump when they see us coming down the hall. It would be funny if it wasn't so potentially serious.

    Bookmark   May 15, 2007 at 7:00PM
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Connie Kru

Hi Chelone
Sorry to hear that you are having such a bad situation. I only dealt with a nursing home (supposedly the best in the area) for eleven days. It probably would have been less if I had not been out of state attending my mothers funeral. It was the most awful thing, and of all the care that I did for my mil, I had to put her there for her death bed--I still feel sad about that, but I had no other option, except miss my Mothers funeral. I hope you can get them to do right for your Mom or that you can find another way to care for her. I know that you will go after them (I mean that in the best way) I am so timid that I admire people who will stand up and give it back to them.
Take Care

    Bookmark   May 15, 2007 at 7:25PM
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HI Connie! it's nice to see your name here and know that a birthday mate is still looking in. :)

It's terribly hard to be polite and diplomatic when what you really want to do is "punch their lights out". It's not the ignorance of how to care for an urostomy patient that lights my fuse, it's the EXCUSES, the stonewalling, and the repeated "medical qualifications" they haul out. It's perfectly clear that they have NO CLUE how to do this stuff. I changed the urostomy appliance and it lasted 5 days, easily. They're changing it twice a day, and telling me they know what they're doing?

I don't think that passes the sniff test. I smell bull-hit, and a lot of piss. ;)

    Bookmark   May 15, 2007 at 8:38PM
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