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"he needs to be in assisted living"
Posted: Tuesday, December 31, 2013 6:05 AM
Joined: 12/3/2013
Posts: 306

Just wondering, how many of us hear these words?  What planet  do a lot of people live on,  and who in the world can afford it, if necessary??  Sticky Wicket!!!
Posted: Tuesday, December 31, 2013 6:13 AM
Joined: 9/20/2013
Posts: 1174

That's a good question, what planet do they live on. I dont know. I do know I am not there at this point and it would completely break his heart. I also think about the cost b/c I think a CG would still be needed.
Posted: Tuesday, December 31, 2013 6:29 AM
Joined: 12/3/2013
Posts: 306

We are doing ok, downsized to a 1 bedroom condo,, at least I have a view of hills and trees, got to have my nature fix! And I rely a lot on my god of understanding, and give thanks for what I have.......
Posted: Tuesday, December 31, 2013 11:12 AM
Joined: 9/10/2012
Posts: 2703

I actually don't hear this at all, not yet.  A variation, possibly, with people thinking we should move.  I'm not up too good on terms, etc., but is assisted living even a very good option for alz folks?  Don't they need more help than assisted living can provide?  If not right now, probably pretty soon.

My own feelings on OUR situation is that I think people that are placed in NH still need a lot of personal care provided by family and a lot of interaction and involvement with staff to ensure proper care of the LO.  So, as long as I can manage, it's easier for me to do it myself and will give me lots of peace of mind.  If I get where I can't physically/mentally manage, then that would have to change somehow.

My own personal notion is that I want to care for him here for the rest of his life, God willing.

Posted: Tuesday, December 31, 2013 1:32 PM
Joined: 5/30/2013
Posts: 1179

Its statements like these that demonstrate why we are headed for a crisis in coming years with all eldercare, but especially AD.  Unless someone has recently placed a LO, they have no comprehension of how expensive it is.  They also have no idea of how different it is to care for someone affected by dementia.  Casual oversight, such as that provided in assisted living, is not adequate for even a moderately impaired LO.
Posted: Tuesday, December 31, 2013 3:16 PM
Joined: 12/18/2011
Posts: 11665

Hi everyone,

The doctor told me a few months ago that she thought it was time to "place" Ray somewhere - that he had declined to the point he needed better care.

If we are able to give it, I think we give the best care they can have.   Like Katrinka, I'll do this as long as is humanly possible for me to do so.   I know it's not right to do this, but when Ray was so bad on Christmas night I made a deal - that if he could wake up and get better and go home I wouldn't place him anywhere as long as I could possibly care for him even to the point of selling every cow and getting rid of every cat and dog.   I know he wouldn't want me to do that but that's the way I felt then and still do.   

He has improved - still not as strong and a little thinner and paler but still getting better.   His HBPC RN came today and BP was okay - she can't see a big difference.   Home Health comes tomorrow to evaluate him for physical therapy.   Our RN thinks this will help him get stronger.

He's walking pretty well today. I got the tractor started and gave the girls a couple of bales of hay and he came out on the porch and watched and waved at me.   Today he's helped me do a couple of things I couldn't do alone.  It's so good to have him do that - we've always done everything together.

I realize from time to time we get to the point we think we can't go on any longer but then we get a second breath and trudge ahead.  It may eventually come to the point where we absolutely can't care for them at home and we'll have to deal with that when the time comes.  

I so wish everyone who has a loved one with dementia had the same benefits and resources that the VA offers.   We'll all get through this one way or another - there's no other choice.   We just have to enjoy every lucid minute we have with our loved one and try to have all the patience in the world that we can muster.  Sometimes it's hard but just think how we'd feel without them.  So  many of our friends have gone down that path and at some time in the future we will go there, too.    We just have to think about that when we think we've hit the wall.

Posted: Tuesday, December 31, 2013 3:54 PM
Joined: 1/31/2013
Posts: 600

I don't know about the rest of you but I think "this" "you and I" are the assisted living situation.  Anything beyond what we do would have to be something greater than that.  They are not going to watch them every minute and have the sometimes nonsense conversations, clean up after them every time it is needed, hold their hand, give them a hug, sleep with both ears and one eye open, just in case, and just generally try to keep them safe and out of stuff all the time.  Please correct me if I have this all wrong.......

Besides what someone else said, I cannot afford 4-5 thousand a month for someone else to do it.

Posted: Tuesday, December 31, 2013 4:10 PM
Joined: 10/26/2013
Posts: 230


Every relative that I have, who said anything about it to me, has told me that my husband should be in a nursing home. They acted like I was being silly and perverse when I brought my husband home after the stroke. Like -- well, I could have had help and decided to do it on my own -- so I didn't have any right to expect any help from anyone in the family.  (The hospital had transferred him to a nursing home for rehab. I didn't wait until a dishcharge -- just said I was taking my husband home and he agreed, so we left after less than a week there.) He was better the minute he was out of there. People on the outside of our marriagees are accountable for their souls and I am not going to judge them... have not walked in their shoes...but I do have to walk in mine; so, my husband is going to stay home as long as I can possibly handle it.


So far, my lo has gotten alot better, he is actually closer to his former self and to the Lord, and goodness knows I have become more sensitive and giving. In some solemn and serious ways this period of time has been both strengthening and cleansing for our realtionship and our characters.


 We caregivers and our loved ones experience some raw moments of intimate honesty that I think 'normal' couples never approach. All the exterior puzzle pieces of fru-fru and icing have been stripped away and so we are given the real opportunity of being 'our brother's keeper' and of having each moment to 'love one another..' as we love ourselves.


I'm thinking that quality of life and experience is not available in a nursing home -- for our loved one or for ourselves. There may well be a time when we will have to say that we have run the race as far as our physical bodies will let us and at that point we will be able to let our loved ones be placed in a facility, but I pray that does not happen to those of us who take up this cross and this joy of deep love and commitment every single day, every single moment. For those who are at that point, (and I have seen some heartbreaking posts about that in forums) I wish you peace and the soft comfort that you can pull from knowing you have done your dead level best...and that is all any human being can do.


God bless all of us caregivers and our loved ones as we enter into this new year.

Posted: Tuesday, December 31, 2013 4:48 PM
Joined: 12/15/2011
Posts: 859

I wish I could care for my LO at home. He was combative, exit seeking, and confined to a large wheelchair requiring a hoyer with two people to transfer, bathe and dress him. I am at the NH almost every day, but until/unless he can walk/self transfer he has to be at the NH. We are fortunate that he is in a good one with compassionate staff,therapy, stimulation and activities. I wish I could have had him home but there was just me. Sometimes there is no choice no matter how much we want it, and I do love him as much as anyone on this board loves their LO.
Posted: Tuesday, December 31, 2013 5:31 PM
Joined: 12/15/2011
Posts: 669


Like Lorita, I hope I can keep Jim at home.  And, like Lorita, I wouldn't be able to do it now without the amazing help I've gotten from the VA.  I've not had anyone tell me I should place him.  His doctors know me pretty well - they are there for both of us and trust me to make that decision.  My kids are very supportive and help as much as they can.  Physically he is pretty frail, walking with a walker and sleeping way too much.  The aides come in twice a week, and I'm going to increase that to three times a week.  The stairlifts are making it possible to live in a two story home.  So day by day, I'm hanging in there and hope to be able to continue.

Posted: Tuesday, December 31, 2013 8:11 PM
Joined: 10/26/2013
Posts: 230



I hope and trust that you didn't think I was making any negative inference toward anyone who had to place their loved one in a nursing home. I have read some heartrending comments on the boards from caregivers who have had to...and they seem so bereft, so lost and so totally devoted to make sure that their loved ones are getting good care away from home. Any way you slice it, it's a hard, hard decision and as I said, we do it at home as long as we are physically able, and then the reality of life forces some of us to have that transition outside our homes. God bless you and many hugs to you.

Posted: Tuesday, December 31, 2013 8:59 PM
Joined: 12/15/2011
Posts: 859

Thank you. We are all in pain from this damned disease. Many's the day I question his placement but then I see how much care he needs that I could not give. I am comforted by knowing how hard we all worked to get him in his current, good facility. I get to see him every day and be his sweetheart and for that I am grateful. Yesterday he said "I'm sorry".  It tore me up. But then I got him to smile and I smiled as well. Let's pray that 2014 is the year of the cure,
Posted: Tuesday, December 31, 2013 9:10 PM
Joined: 12/29/2013
Posts: 37

It does hurt so bad when they get their few moments of clarity and realize what is going down.  My LO doesn't remember me now, and today is the 2nd day that he has tried to get into bed with all his clothes on.  Luckily I was able to work him thru that.  But he realizes that he basically has no useful life now, and it is hurting him, and I think that is why he is being so grouchy - just his way of reacting to this horrible disease that has claimed who he was.  So sad for him.
Posted: Tuesday, December 31, 2013 11:02 PM
Joined: 7/9/2013
Posts: 3205

I have wondered how they could survive in assisted living, I think my dh would just be lost.  

I would like to know how or who to contact to find out what the VA offers.  He is 100%,, he uses the VA for eyes, hearing, dental, and his feet, which were frozen in Korea.  His PCP is no help(civilian) He has an appt. with the Memory Clinic the 17th, Cardio. called today and had him scheduled for a CT same day.  I was trying to tell her he already had the Memory appt., she was trying to brush me off, and he was screaming he was not going there again,(Memory Clinic)  he says those Dr.'s took his lic. because they were afraid he would die sitting in the car.  I have been waiting months for the Memory clinic appt., so I could talk to someone.  Now I realize he won't be going back.  I am wondering if the VA could help me, he goes to the one in Fayetteville.  He is very strong willed, controlling, and has anger issues.  He can be very loving, and kind, I don't want to paint him bad.

Thanks for listening.


Posted: Wednesday, January 1, 2014 1:21 AM
Joined: 10/26/2013
Posts: 230

Hi Bjblyghtnin, The VA has been wonderful for us. There should be a Caregivers program at your nearest VA hospital. Just call your local VA and get the general info operator; say you are a caregiver, you need help, and you don't know which offices to contact. The head Social Worker there should be able to direct you. In fact, your husband probably has a social worker that has already been assigned him as part of his health 'team.'


 Up here in the Manchester,NH branch, we are being cared for by my husband's primary doc and through him a geriatric psychiatrist, OT, a home visiting nurse, a psychologist that calls from time to time just to see if we are OK, a neurologist, a speech therapist, and his opthamologist -- so far. I didn't know how to reach out at first so I just embraced anyone who would help. One office led to another. They have been so wonderful -- from walk-in urgent care to the OT sending out two therapists to try and help me figure out how to make the house safer. You won't regret calling and asking. All of a sudden I had disposable underwear, a bench for the shower, an alarm floormat, etc. I just admitted straight out that I was in over my head and needed help -- they have been fantastic. They eased connections with our state's Service Link program, where I was given a caregiver grant last year for services around the house. The people at the va and at the alz chapter in Mass/NH have worked seemlessly in a dedicated and caring way to help us. Do try and find out more. There is SO much help available. Good luck! God bless!


Posted: Thursday, January 2, 2014 7:28 PM
Joined: 11/30/2011
Posts: 70

Heartforge wrote: so, my husband is going to stay home as long as I can possibly handle it.

That is exactly what I kept saying, and I was able to accomplish it until my husband died at home, a little over two weeks ago. You write as if you have good sense, so I am sure you are being wise about your decision. In my case there are no kids, no family, no one else putting in their opinion (or helping!) My husband's doctors always looked at me almost as hard as they looked at him and asked about my health. I am over 70 and I did all the care for my guy including a year of increasing incontinence. Only a month before he died did I get help in three times a week for his bathing and dressing in the morning.

I know not everyone wants to or can do this. and I am no saint: I muttered a lot and even cried while doing some of the tough stuff and said to myself, I can't do this much longer, either physically or emotionally.

But after my experience with "respite" care and some interviews with other "places" I know that the only way one can be sure of continuing good care is to be there every day. Everyone I know who has placed someone in a facility goes every day, some go two or three times and feed their loved one by hand. Personally I would rather do that at home with some nursing help. 

Only we know what is best for us. Only we know how much we can do and when it's time. In October I got a call from a nursing home where I had left our name, telling me they had a bed for him in mid-December; I said it was too soon. And he died in mid-December at home.

I just feel it all worked out the best for us. Go with your instincts. Find out what help you can get. And make sure you get out from under once in a while. As they say, the flight attendant always tells you to put your oxygen mask on first before helping the other person. You have to stay healthy.

Posted: Friday, January 3, 2014 1:20 AM
Joined: 7/9/2013
Posts: 3205

Heart forge

Thank you so much, I didn't know there was so much help for us.  I will contact the VA.  We are in a retirement area, lots of vets here, and a good VA hospital about 35 miles away.

When I posted I was just short of a big boo hoo.  Managed to stuff it, am better today.

He has a lot of health problems.  COPD, PTSD, diabetes, colesterol, pace maker, 3 aneurisms, has had bi-pass, froze feet in Korea, they are a big problem.  And of course VASd, and AD.  I think that's all.  


Posted: Friday, January 3, 2014 2:30 AM
Joined: 3/7/2012
Posts: 1738

You all have given me courage. Thank you.

  My husband is going through a horrendous, horrific emotional rollercoaster ride... full stage 6. He has NO control of his emotions and he is pretty lucid (conscious) as to what is happening to him every second on the second. He said today: "Could someone, please, kill me. I want to die." He tried to open the back and front doors because he wanted to run away. He was upset with himself for his lack of emotional well-being, and at me for locking the doors. He wanted to be "put away." When I said, "I could not do it", he gave me that "look" some of you have written about... and I felt afraid. He kept asking: "WHY? WHY? What is happening to me?" Today it was a day in hell for us. I felt for the first time that perhaps I should start the process of placing him!!! I've been crying all day & night. It is now 3:30 AM and I came here for solace.

Your words of comfort to others have given me hope, and above all, courage to continue caring for him as long as it is physically & humanly possible. There is no place like home. 

Posted: Friday, January 3, 2014 6:00 AM
Joined: 12/3/2013
Posts: 306

Just posted on Loritas site, re ER, yesterday..upshot, hubby's falling  episodes couldn't be watched over as well in a nursing home situation, and I'm the assistant in assistant living..... I'm probably the one that needs the assistant!!   The dr. In ER said they were going to set me up with home health care,etc. God, I have no idea what that is even about.    Most thankful........
Posted: Friday, January 3, 2014 10:42 PM
Joined: 10/9/2012
Posts: 73

In the book I'm Still Here, Dr, John Zeisel cites an Australian study that really hit home with me and that I think is relevant to this conversation.  Twenty spouses of patients in a nursing home were interviewed in the study .  Ten patients were in the nursing home for illnesses not related to Alzheimer's .  Ten were there because of complications of Alzheimer's .  Sadness and despair were emotions expressed by those with spouses with non-dementia related illnesses .  Guilt was an emotion expressed only by spouses of Alzheimer patients.    The point he makes from this is that Alzheimer's is a physical disease just the same way cancer is and spouses of Alzheimer's patients should feel no guiltier than spouses of other terminally I'll patients requiring special care .

Still, I'm one of those who will do all I can to make a good home here in our home  .  for my beloved , even though it is more challenging everyday .  I sleep every night now in our junk / dog room.  It will take a little while, but I will make it look like a doll house instead of a dog house .  It smells bad because this is really our dogs' room.  But I am cozy in here and my LO can wander around all night opening and closing drawers or counting coins to his heart's content with no complaining from me.  He's in a pretty good mood in the morning , so when dawn arrives , I go in the kitchen and start coffee .  I think having a stranger to deal with all night is stressful for him.  

I have arranged for someone we both know and trust to come "clean our house" on Thursdays so I can go to my club meetings and have a day off .  I'm looking forward to it.  

Regarding nursing homes and my reluctance to put my LO in one, my daughter pointed out to me recently that he doesn't really recognize this as his home anymore , and that is becoming more true everyday .  I can see that the day may come that I have to realize that he has a brain disease that will lead to the need for a more well designed care plan than I can provide here .  I do dread that day because I know myself and I already know that I will feel guilty .

Posted: Saturday, January 4, 2014 1:46 AM
Joined: 7/9/2013
Posts: 3205

When I feel the time is right I will place my dh in a nh.  I think the time does come when he will get better care there than I can give him.  I have to do what I think is best for him, if I feel guilty about it, then I will have to learn to deal with that guilt.


Posted: Saturday, January 4, 2014 3:15 AM
Joined: 10/2/2012
Posts: 484

Early on, I told my husband I would take care of him as long as I could physically do it, and I could keep him safe.  


Unless my prayer is answered, and something else takes him, I know there will come a time when he will receive better care in a nursing home than I can give him. I feel my  duty then will be, to be his advocate, to make sure he gets the best care possible.