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Old 05-02-2012, 07:38 AM   #1
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New to this wonderful message board

Hi,
I am reading all of your posts and just wanted to say I admire your courage and willingness to share. It is VERY helpful to those of us dealing with the care of loved ones with such devastating disease.

My story:

I've been a nurse for 31 years and am the care provider now for my mother
in the advanced stage of vascular dementia.
I gave up my FT nursing job and work perdiem once or twice a month when family can care for her to keep myself in the workforce. Work feels a bit too close to home sometimes but at least I get out and earn a bit of money;=)

When she moved in with me 2.5 yrs ago she was unable to care for her finances, diabetes and live alone but was ok otherwise - Walking, understanding most things etc.

Now, 2.5 yrs and a year after major surgery (a right above the knee amputation due to vascular disease), 2 hospitalizations while in rehab that did nothing but make her deteriorate, she is incontinent unless I get lucky and get her on the commode and she manages to go for me. She does not even know what she has to do. I had her to a urologist for a small UTI but that cleared and does not seem to be the culprit in the cognitive decline.
It is now resolved.

Her ability to process information is just shot. Of late she is just sleeping all the time, the cognitive decline is just shocking to watch. This past week she has started the closing eyes at the table vs eating and has a lot of neurological signs and reflexes when sleeping.
I feel she is starting to shut down neurologically.

I have a swivel-slide shower chair that is a wonderful product and am still able to shower her every other day. I've said when I have to feed her, she cannot sit up, follow simple commands, transfer, I will have to consider placing her in a facility.

I feel myself moving more that way with each passing day and it is sad, makes me feel guilty even though there is no reason for me to feel that way. As you all know there is that intellectual knowing that fights with the emotional feeling.

I pray she passes here at home but worry I may not be able to last. It seems this can go on forever.

I enrolled her in a medical day care center 3x a week about 4 months ago that is costly at a bit over 2000.00/month as she does not qualify for assistance that would cover it but it gives her stimulation and the care she needs medically and gives me 6 hrs or so to myself. They pick her up and drop her off and give insulin. I get her hair done at the salon they have etc and it gives her stimulation and somewhere to be with recreation.

I want her money being spent on her and not being there for those left behind but getting her out in the AM for the center is a job, with getting the prosthesis on etc. I sometimes question my thinking on that when the clock goes off at 6AM ;=) Once she is on her way though, I know it was worth it.

Getting her to doctor's appts and in and out of the car is a chore but must be done. I may have to look into some of the ride services that can accommodate the wheelchair but for now we are managing.

I know she is safer, happier, cleaner and better cared for than anywhere else but it's getting hard.

That's what brought me here, to read about everyone's experiences. Knowing you are not alone is very important.

Dorothy

 
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Old 05-02-2012, 08:14 AM   #2
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Re: New to this wonderful message board

Welcome to the board Dorothy I hate that you needed to find us but glad you did. It is a wonderful place. I wandered in over 5 years ago with the same questions and emotions swirling around my head.

........."I feel myself moving more that way with each passing day and it is sad, makes me feel guilty even though there is no reason for me to feel that way. As you all know there is that intellectual knowing that fights with the emotional feeling."..........

BINGO! That is the problem. Our rational brains tell us where we are and what we need to do. Our emotional brain beats up on us because we can't fix it or do all. As some wonderful board member told me when I was wrestling with this same question.... When we are ready to place our relatives, the relative is past ready to be placed.

You have put your life on hold to care for Mom. You have a vision of being able to do it all until the end. Then the reality of the situation hits home. Can you sustain the emotional and physical strength you need to do it all? It becomes a battle between our dreams and reality. Anything short of fulfilling our dreams make us feel that we have not reached the potential we set out... even if it is an impossible potential. At least with my that potential involved spandex and capes. I did figure out I was not super woman.

Guilt should be reserved for those times when you do not do what you know you can and should do. In this situation you have done all that you can and should do. You are continuing to do all you can and should do. Your responsibility is not to take care of Mom's every need yourself but to be sure that Mom gets the best care possible. That may or may not be at your home.

Oh, and I will say that being in the medical profession doesn't give you an emotional edge. It may help with the day to day knowledge of what to do but you are dealing with MOM!

Step back a bit and get out a piece of paper. List the pros and cons of keeping Mom at home. Be honest and include your emotional and physical needs on that list as well. It's not just about Mom, it's about you as well. It may take a while to do this list... it's not something you will figure out in an hour so take your time because it will take days for you to see all the pros and cons.

Then know that not all facilities are created equal, as you probably already know. There are good facilities that will take excellent care of your Mom. Will it be in just the same way that you do, probably not, but excellent are anyway. Check out some of the local facilities and talk to those that have their loved ones in a care facility. Know that you will still be taking care of Mom. You will still be her advocate. You can still be involved in her care. What happens when you place Mom is that somebody else does the day to day care leaving you more time and ability to focus on different aspects of Mom and yourself. It is tough to do but let logic help you make this decision rather than emotions. But mos of all throw guilt out the window because obviously you have done an amazing job to this point with your Mom's care Pat yourself on the back and go forward to where you and Mom needs to be... wherever that is!

Love, deb

 
Old 05-02-2012, 09:00 AM   #3
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Re: New to this wonderful message board

Hi there.

I am sorry that you and your mom are going through this right now.

You sound like a wonderful and caring person and your Mom is lucky to have such a caring and responsible child.

That said...

I think it is time for you to consider alternate arrangements for you mother.

It sounds like her condition has declined to the point where you have had to become a one-person nursing home.

That is simply too much for any single human being to shoulder for very long. Doing so over the long haul could be very, very detrimental to your own health and well being.

You have to think about yourself too, and I suspect that if your Mom were well, she would feel that way too. It could go on for quite a while longer. Have you considered that your Mom would not want to burden you if she were in a state to make her own reasonable decision?

I think you also have to consider that in certain situations of advanced disease, it might good to consider a facility sooner rather than later. You are already trying day care to give her certain of things that you simply cannot duplicate at home and considered ride services. I think these are indicators that it's time. Making the move sooner would give her time to adjust a little and to reap the benefits that a facility environment has to offer.

Yes, it is true that in a certain way there is nothing like home, yet, in another way... a facility can offer certain things that home cannot, not because it isn't filled with love and attention, but because it is a private home and not a facility. There is great comfort in knowing that 24 / 7 there are competent people making sure everything is OK and doing all they can to ensure that she has pleasant days.

I understand your feelings of guilt, even tho you know that they are not warranted. When I finally was able to get my Aunt to the Nursing Home, I had the OPPOSITE feelings of guilt - because she thrived there. It was so much better than I thought it would be. I then started to feel regret that I had arranged for her to stay at home so long!

There is a good book called Home or Nursing Home which has some facts and figures that helped me make the final decision to place her.

Of course selecting the RIGHT facility is the key. My aunt's facility is not "fancy" but the care and attention are excellent. It is small and personal. Everyone knows her and they even know me, when I call the nurse statiom to check on her they recognize my voice without me having to announce myself. The staff is very kind and caring. They are in a borderline neighborhood and not fancy and therefore their 5 Star rating and good reviews are their only calling card - so they work hard to maintain both.
So all the research, make personal visits, talk to residents, look for personal reviews or recommendations, and, as a health care professional, trust your gut.

As my aunt put it just yesterday "I never thought the nursery could be such a nice place to live!" (Yes, she calls it the nursery.)

One additional benefit is that when we visit, we can spend our time refreshed and well rested and just on the visit instead of on caregiving.

On the other hand, if you enjoy the caregiving (which you might given your profession), many NHs will accommodate you (especially since as you say you are a nurse). At her place, we can bring in a private nurse or aide to provide services at our expense (in your case no expense since it is you yourself). All they have to do is provide proof of licensure and go through a short 1 - 2 hour protocol orientation to ensure they know the rules, routines and practices of their facility before could bathe, clean, transfer, walk or exercise her. We as visitors can also bring in food and eat with her any time we want. Some will also let you personalize the room a bit to feel more like home.

So there is a long way you can do remain very involved in her care, but to take the larger part of the constancy of the burden off of you.

One additional consideration is that at my aunt's NH, she does not have to leave the facility to get regular medical, psychiatric or psychological care. This relieves her of a great stress since for most dementia patients transfers and changes of scenery can be very taxing. Even for her daily activities and entertainment, she only has to go down the hall or to a different floor. Transport by car to her medical services and day care might be causing her stress too even though she cannot express it.

Lastly, at some point if your mother were deemed terminal you could take her home on Hospice if you felt that it was important for her to be at home. By then you might think of her new residence as her home though and not feel it was necessary. But it is always a possibility.

I know from experience that these considerations and decisions are so so hard. Our emotions and brains battle it out and it no matter what we decide it is almost impossible to feel "happy" about it because the situation itself is so lousy.

Please do not take anything I have said to imply that what you are doing for her is not top notch. That is not what I am saying.

I am just sharing my experiences from having made the decision to move to a facility and I hope in some way it is helpful to you.

Suzy

 
Old 05-02-2012, 10:05 AM   #4
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Re: New to this wonderful message board

Thank you Deb and Suzy. I appreciate all your advice.
I spoke to my brother today about my concerns and as ever my family is totally in support of any decisions I make for Mom. My siblings are very appreciative of the fact that I gave our mother and continue to give her care that she could not get anywhere else and the ability to be in a beautiful home with family and eating with us etc. They also say that they totally understand when enough is enough. My husband and son and daughter have been great but it's getting a bit overwhelming.

I had very negative rehab experiences with her last summer despite their star ratings and just dread the NH hunt.
I am going to look at the long term care at the facility where she is doing Adult Day Care and see what's up with them. They have a good rating. We'll see ;=)

I have the luxury of time right now vs. dealing with a hospitalization and trying to pick a place with a discharge planner.

I'm getting myself adjusted to the concept and that's a big first step for me.

Thank you all again

Dorothy

 
Old 05-02-2012, 10:48 AM   #5
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Re: New to this wonderful message board

You are totally smart to do some research and planning NOW when there is no emergency.

We were just LUCKY that the right facility happened to have an open bed when my aunt got discharged from the hospital.

Star ratings are important but it is just one thing to take into consideration. Look for personal reviews and recommendations and when you do site visits see if you can find any visitors or residents who are willing to chat with your for a while.

Taking your time and coming to terms with the different stages of your emotions will help you make the right decisions.



Quote:
Originally Posted by dp135 View Post
Thank you Deb and Suzy. I appreciate all your advice.
I spoke to my brother today about my concerns and as ever my family is totally in support of any decisions I make for Mom. My siblings are very appreciative of the fact that I gave our mother and continue to give her care that she could not get anywhere else and the ability to be in a beautiful home with family and eating with us etc. They also say that they totally understand when enough is enough. My husband and son and daughter have been great but it's getting a bit overwhelming.

I had very negative rehab experiences with her last summer despite their star ratings and just dread the NH hunt.
I am going to look at the long term care at the facility where she is doing Adult Day Care and see what's up with them. They have a good rating. We'll see ;=)

I have the luxury of time right now vs. dealing with a hospitalization and trying to pick a place with a discharge planner.

I'm getting myself adjusted to the concept and that's a big first step for me.

Thank you all again

Dorothy

 
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Old 05-02-2012, 06:39 PM   #6
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Re: New to this wonderful message board

Dorothy, please do not equate a bad rehab experience with a long term care facility that specializes in dementia. If you will look back at some of the threads related to rehab, they are rated on their rehab work and have no clue how to deal with a patient who has dementia. Horror stories abound related to dementia patients in rehab facilities. When you find a care facility that specializes in dementia care (and that is what you need to find) then they know how to deal with these residents and it works so much better.

You are so right that doing your research now is much better than when that crisis occurs which forces you to make a quick decision.

When I searched for a facility I did look at star ratings and also checked reviews. I checked the state department responsible for facilities to see if there were any deficiencies. I made many visits to the facility. I ask to observe without sales personnel present. I talked to unit directors and care managers. I went at different times of the day to see what was going on in more than just a quick snap shot of time determined by the marketing director. Yes the marketing director does call the unit and tells them to step it up because a prospective family member is coming through. So take the tour and then come back for visits unannounced just to observe. I also talked to family members in the parking lot when administration was not around. I got my best information in the parking lot Don't just talk to one (who might be disgruntled) but several to see the general consensus. I also ask about staff employment longevity and turn over. If a unit is staff by employees that have been with the company for 10 years and the care appears to be excellent... you know it's a good place. Talk to the wellness staff, check out the dinning room and eat a meal if possible. Watch for activities going on and how the staff relates to the employees. You will know when you find the right place

Love, deb

 
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Old 05-03-2012, 03:27 PM   #7
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Re: New to this wonderful message board

Hi Dorothy

Just thought I'd throw in my two cents! After skilled nursing, and assisted living, neither of which worked out very well for my stepdad, we found a wonderful adult family home that was very comfortable taking care of patients with dementia.

My stepdad got to live out his last year and a half in a home, in a lovely private room with a private bath (we paid extra for this, but we felt it was worth it), with a very small, very attentive, very loving staff (basically 3 people cared for him). My mom and I were free to visit and spend as much time with him as we wanted. We would usually visit in the afternoon, and it always made me feel good to begin to smell dinner being prepared in the kitchen. They may not have been the fanciest of meals every night, but it was better than institutional food and I was just so happy that he was able to live in a home setting.

Not sure where you are in the country, but I always like to share my positive experience with adult family homes. My stepdad was able to stay there, we brought hospice in at the end, and he passed away there. That was 4 months ago.

Thinking of you and wishing you all the best!!

 
Old 05-03-2012, 04:41 PM   #8
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Quote:
Originally Posted by TC08 View Post
Hi Dorothy

Just thought I'd throw in my two cents! After skilled nursing, and assisted living, neither of which worked out very well for my stepdad, we found a wonderful adult family home that was very comfortable taking care of patients with dementia.

My stepdad got to live out his last year and a half in a home, in a lovely private room with a private bath (we paid extra for this, but we felt it was worth it), with a very small, very attentive, very loving staff (basically 3 people cared for him). My mom and I were free to visit and spend as much time with him as we wanted. We would usually visit in the afternoon, and it always made me feel good to begin to smell dinner being prepared in the kitchen. They may not have been the fanciest of meals every night, but it was better than institutional food and I was just so happy that he was able to live in a home setting.

Not sure where you are in the country, but I always like to share my positive experience with adult family homes. My stepdad was able to stay there, we brought hospice in at the end, and he passed away there. That was 4 months ago.

Thinking of you and wishing you all the best!!
Thanks so much. I am on Long Island. My condolences.
That sounds like a wonderful arrangement. I'm happy that you found that.
I have to say that just venting and talking about all of this made taking care of Mom today much more relaxing. I think I needed to just start talking about it to feel less trapped in a weird sort of way.
I guess I'll know when the time is right.

I'm going to start visiting a few places . Unfortunately the place I thought might have LT care has discontinued it and gone to a rehab model.

Dorothy

 
Old 05-04-2012, 09:09 AM   #9
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Re: New to this wonderful message board

Dorothy,

I just want to share with you my experience. A good nursing home, private or not, has a long waiting list usually. The local reputation is important. My FIL is in a private NH for memory impaired. There are all kinds of residents from young and old. I see a few of people with darker hair and there are also some people who are in the late 90s. My FIL is 91.
The one we picked is a residential care home with nursing care 24/7. It has 2 wings (One wing for mid-stage and later stage and the other one for sicker patients.) We waited 9 months. We moved my FIL to another state to be closer to us so this is the home in VT.
One question you need to ask first is if they do certain nursing things like catheter, oxygen, IVs or even feeding tubes. If you don't want to go for aggressive treatments, you should go for the ones that can do hospice or palliative care. It is a personal choice. Once you decide on it, you may not be able to move again later on given that she will be sicker. If you don't want certain service, you can stay for hospice. If you want some aggressive service, you would need to move her to the hospital and to another skilled care home... Lots of choices. I like the one for memory impaired so they can focus on dementia in the locked NH with 2 wings.

Do look into any NH even if it is a little far. A good one has a long list so put her on the waiting list now. Also the ratio of caregiver to the residents is important too. My FIL's home has 4 residents to 1 caregiver in the day/regular time. Now they have one nurse in each wing. One nurse for all overnight. The directors are on call 24 hours in case of emergency.

Hugs,
Nina

Last edited by ninamarc; 05-04-2012 at 09:12 AM.

 
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