iPhone app iPad app Android phone app Android tablet app More

Featuring fresh takes and real-time analysis from HuffPost's signature lineup of contributors
Marie Marley

GET UPDATES FROM Marie Marley
 

How I Got My Beloved, Demented Romanian Soul Mate to Move to a Nursing Home

Posted: 05/21/2012 1:46 pm

No one wants to even think about placing a loved one with Alzheimer's in a facility. Period. But I had no choice. I had a full-time job and was spending every free moment caring for my soul mate, Ed. Yet he needed so much more care than I could possibly provide.

I tried having professional caregivers come in to help but that was a disaster. Ed needed much more care than even two people could provide. Day care didn't work any better. They told me his dementia was too advanced for them to handle.

He was walking around his apartment naked most of the time. I was terrified he'd leave the apartment with a cab driver, which he'd previously done on a regular basis. I worried he'd get lost and not be able to find the cab driver to go back home. I was afraid he'd be lost forever.

Plus, he was drinking prodigious amounts of vodka, starting before noon and ending at 3:00 a.m.. I tried in vain to get him to drink less. He had fallen several times -- probably due to the alcohol and/or his advancing dementia. Fortunately, he hadn't injured himself but I knew it was just a matter of time. And he wasn't eating well. He was 5'8" and weighed only 115 pounds. I couldn't get him to eat more, either.

As I describe in Come Back Early Today - A Memoir of Love, Alzheimer's and Joy, I was distraught at the very thought of putting him in a facility. He'd come to this country with little more than the shirt on his back as a political refugee, fleeing the brutal communist regime in Romania. And there I was, fixing to admit him to an institution where he'd be in a secured unit. The very thought broke my heart and always left me in tears.

So there I was with this 92-year old man who desperately needed to be in an Alzheimer's care facility. The only thing was, he adamantly refused to go. He said he'd die first. He always said he'd die first. Always.

I was under intense pressure from his doctor, his lawyer, his close friends, my lawyer, several other professionals I had consulted and all my family and friends to get him into a safe place and to do it quickly, even if I had to take him against his will. That idea scared me to death. I was sure he'd never speak to me again. Not a fitting end to a 30-year relationship.

To make a long story short, after our third visit to the Alois Alzheimer Center in Cincinnati, he did agree to go. He adjusted quickly and was too demented to understand that he couldn't open the door to leave his unit.

Our love blossomed once again. Once I didn't have to care for him and worry about him every available moment, I could relax and just enjoy visiting him.

Now, what do I have to say about all this?

Shame on me for not having had the nerve to take him against his will.

There are better ways to get loved ones into a facility when they don't want to go. For example, some people take their loved one to a facility and say, "Let's go in. I want to visit someone." Then when they leave they simply don't put the person back in the car. You can imagine the patient's initial rage, but facilities are used to dealing with this and know how to handle it.

Another method is to say, "We have reservations for dinner." Then take the person to the selected facility at lunch or dinner time and go into the dining room and sit down and eat with him or her. Then, as in the previous method, when leaving after the meal simply don't put the person back in the car.

It's important to remember that we are responsible for the health and well-being of our loved ones with Alzheimer's. If we cannot care for them adequately -- for whatever reason -- it's up to us to make sure they are safe and well cared for no matter how heartbreaking it is for us. Fortunately, most patients do adjust. In fact, I've been told by staff at long-term care facilities that the transition is often more painful for the caregiver than for the patient.

What methods have others of you used to get your loved one into a nursing home when he or she didn't want to go?

What methods have others of you used to get a loved one into a facility when the person didn't want to go?

 
 
 
FOLLOW FIFTY
No one wants to even think about placing a loved one with Alzheimer's in a facility. Period. But I had no choice. I had a full-time job and was spending every free moment caring for my soul mate, Ed. ...
No one wants to even think about placing a loved one with Alzheimer's in a facility. Period. But I had no choice. I had a full-time job and was spending every free moment caring for my soul mate, Ed. ...
 
 
  • Comments
  • 98
  • Pending Comments
  • 0
  • View FAQ
Comments are closed for this entry
View All
Favorites
Recency  | 
Popularity
Page: 1 2  Next ›  Last »  (2 total)
photo
simzillyjp
Up, Up & Away
03:21 PM on 05/27/2012
In America....shove them in a nursing home for whatever reason. When foriegners come....they are horrified to learn Americans do this.
01:43 PM on 05/27/2012
This is such a painful and sad story. I think most of us has someone who has dementia in the family. In my case it is my husbands mother. When this started all the family said we will help. That did not last even one week. It has been my husband all the way.With my help when I can. Its hard since he has had many health issues of his own to deal with. I had cancer with chemotherapy and radiation treatments. But we still made time do care for her. We tried to turn to family for the help they had promised but they said just say NO. You see my husband made a promise to his father on his death bed to take care of his mother. To this day he has kept that promise to his Dad. No matter the cost to him . It breaks my heart to watch my husband strugle with this. It also is such a horrible health issue that so many people have or will get. I hope one day that a cure is found.
photo
HUFFPOST BLOGGER
Marie Marley
Author, Come Back Early Today
07:35 PM on 05/27/2012
My best wishes to you and your husband as you deal with his mother's condition. It takes real love and devotion to do this work.
01:28 PM on 05/27/2012
I am 68 and my husband is 72...We both have short term memory loss and aging aches and pains and illnesses, BUT it depresses me so to think that either one of us at some time during the aging process may require living in a care facility...Hopefully I will leave this planet before that option becomes a reality..My father was in an assisted care facility (an excellent one) and at the point of having to go into a higher level of care facility (nursing home)..He hated the idea of that and losing what level of independence he had left. He luckily passed away just before that decision had to be made. He was 90...His mind was good, but mobility was not....
HUFFPOST SUPER USER
jgamble28
ya never know.
12:52 PM on 05/27/2012
My Mother has demenia and my sister tried to take care of her at home, but the frustration and my moms bad behavior became so bad my sister had to take her to assisted living. My poor sister hated to have to do that but there was no choice. They had to put my mother in lock down because she kept trying to leave the place.My mother still hates being there but there was no other choice.
photo
HUFFPOST BLOGGER
Marie Marley
Author, Come Back Early Today
07:38 PM on 05/27/2012
Sometimes there's just no possible alternative to nursing home care, even though nobody wants it.
12:49 PM on 05/27/2012
Until you have had the experience of being a care giver 24/7, you can't imagine how difficult it can be. It will eventually take a toll on your own health and mental attitude. You have to realize that someone who requires round-the-clock care can't be provided by one person. Your love for the person won't be enought to sustain you. You have to have help. And as the situation progresses and gets worse, several people will be needed to care for your loved one. Sometimes we consider it a personal failure when we can't provide all the care that is needed. And if one more person says to me "God will never give you more than you can handle", I'm going to smack him. I nearly ruined my health and mental well-being caring for the "love of my life" in his final months. We all need help.
photo
bredlaum
manners are free
12:13 PM on 05/27/2012
That took a lot of courage and love on your part. Good for you.
photo
HUFFPOST BLOGGER
Marie Marley
Author, Come Back Early Today
07:52 AM on 05/28/2012
Thanks. I really appreciate your comment. Marie
12:09 PM on 05/27/2012
God Bless you Marie.
I understand a little of what you went thru. My husband sustained a life threatening brain injury that put him in a coma for 3 days. Long/short memory gone, hearing gone. He, luckily does not have much continued brain trauma.
I also have a son, 24, with severe Cerebral Palsy. He cannot do anything physical for himself. Think of a 6 month old. Cognitively more advanced. It is difficult daily and will be the rest of his and my life.
My dad has Parkinsons. Altho we see few changes in the brain at this point (8 years) we do know what's coming. He and my mom have been together since they were 14 and 15. They are now 63 and 64. I worry about my mom and what she will be up against when my dads brain isn't working the way it has for the last 64 years. I have my own struggles at home with my son, and altho can help, wont be there 24/7. I hope she will take my suggestion and place him at some point, but I guess we will cross that bridge when it gets here.
I can feel the love you have for you husband. I am sorry his life couldn't be what you and he would have wanted in his later years. I commend you for the for the decision to allow yourself the opportunity to visit him instead of the continued burden of caring for him.
photo
HUFFPOST BLOGGER
Marie Marley
Author, Come Back Early Today
07:41 PM on 05/27/2012
Angel, Thanks for your kind words. It sounds like you have more on your plate than any one person could handle. I wish you all the best as you go forward. Marie
HUFFPOST SUPER USER
forensicb
Forensic Consultant Retired
11:39 AM on 05/27/2012
If the patient is really at the point of needing a nursing home they will not remember being left at the home...loss of short term memory is the first to go and is the hallmark symptom of the disease...the big problem is the emotional tool on the family...both my mother and wife had tobe in a nursing home...I have a memorial website in both their honor and memory...it has 230 essays and articles on Alzheimer's and problems with suggestions...the attachef link is to an essay on making the nursing home decision: http://junebergalzheimers.com/index.php?option=com_content&view=article&id=119&Itemid=166

Our MN dept of Health has said our website is a good resource for professionals...
photo
HUFFPOST BLOGGER
Marie Marley
Author, Come Back Early Today
07:54 AM on 05/28/2012
Thanks for the link.I'm sorry your mother and wife had to go to a nursing home. Yes, it is harder on the family than the patient.
HUFFPOST SUPER USER
forensicb
Forensic Consultant Retired
08:51 AM on 05/28/2012
I was not suggesting it was harder on the family than the victim...to me this is an outrageous selfish myth...in the late stages of this disease, Mayo has voiced the opinion that I agree with and that is that fear becomes a constant companion of the victim of the disease...they no longer recognize anyone or anything...everytime they open their eyes, it is to another alien world that they do not recognize and to people they do not reocgnize and they do not know if these persons will harm them or not...they have difficulty swallowing their food, they become incontinent, they lose control of their bodies...some have seizures it is far worse on the victim...all I did was dedicate my life to making theirs better and I certainly had no foolish thoughts that my life was worse then theirs....
10:30 AM on 05/27/2012
I found myself in the same situation with my husband. I took my happy go lucky, loving husband to the hospital for a routine stomach hernia repair and brought home a child. During the years that followed his condition worsened and I took care of him myself for five years, 24 -7. My husband truly loved me and I him and he became so dependent on me that if I would have put him in to a nursing home, he would have died within 2 days or less. Without me being there for his every need and care he would not have trusted anyone and he would have given up on his life. I continued to take care of my darling husband until he needed another surgery Sept 13, 2011 for an abdominable aortic aneurysm. He got through the surgery okay and was good for a week, then got very ill and went into a coma. On the night of Sept 30th, while we were all in his room, he suddenly called out my name and wet his lips and wanted a kiss, I leaned down and kissed him, not knowing that would be our final kiss. He passed away the next evening, Oct 1, 2011. I do not regret ever taking care of my loving husband, not for a minute, a day or what was left of his lifetime. Love was our bond that kept us together and will until we are reunited again!
firstamendment3
It's all so ironic.
10:42 AM on 05/27/2012
An awesome story! I often deal with families who suffer from a lot of guilt over placing someone in long term care. There's no reason for guilt. Not everyone can do what you did. God bless.
09:57 AM on 05/28/2012
Thank you and yes I do agree with you on the guilt issue, but that was never a problem for us. My husband and I chose to take care of each other whomever needed the care first, a long time ago.  If you only could have known the love we shared together, you would have understood much better...God Bless You Also.. 
photo
caroleann926
Less exploitation and more empowerment to women
01:54 PM on 05/27/2012
I commend you for your tenacity in taking care of your husband. However, in many cases the caregiver dies before the patient due to neglect of their own health. Statistics bear out what I am saying. I am sorry for your loss.
10:08 AM on 05/28/2012
I know what you are saying about that with the caregiver. But you know I have been through so much GOD keeps me going, HE never lets me down. My faith is so strong that is how I knew I could take care of my husband. You see my only son was killed on his way to our home in his truck, on June 13, 2009, 34 yrs old, loving husband and father of 3 beautiful little angels..And now this with my husband, I could not let him go...I held onto the last loving man in my life and did everything I promised....
10:16 AM on 05/27/2012
Thanks for sharing your story, it really hit close to home for us here. My husbands grandfather is 93 and up until last year has always been completely independent and cognitively functional to remain at home. Fast forward to now...although he is physically still independent...his cognitive function is diminished greatly. While he is financially well off enough to pay for a skilled nursing unit, he is so very tight that he won't part with ANY of his money! While his daughter has power of attorney over his finances and medical care, she is too afraid to place him in a facility against his will. She would have to trick him into seeing a doctor (which he refuses to see) plus she doesn't think there is a facility nearby that would agree and could enforce keeping him against his will. Currently he is coherent and has full memory recall one day and incoherent and has no memory the next day. Any ideas/suggestions on what one must do to use the power of attorney and place this man in a safe and monitored environment? P.S. This man is verbally abusive towards his daughter (the one with power of attorney)who he calls 20 times a day and who checks on him at his home each day, brings him groceries and pays his bills...he has become paranoid and delusional and trusts no one.
photo
HUFFPOST BLOGGER
Marie Marley
Author, Come Back Early Today
07:49 PM on 05/27/2012
Grace, It sounds like a real mess. His daughter might try calling the Alzheimer's Association Help Line (see www.alz.org), talk to her father's physician (with or without telling her father), and/or talk with the administrator of a local nursing home. All of these people are experienced at dealing with this type of situation. If nothing else he may become so demented that he won't know the difference if she places him in a facility. Best wishes to all of you. Marie
HUFFPOST SUPER USER
mgarrison0827
10:14 AM on 05/27/2012
Maries, I see people on her ewho doubted your decision, and I'm sorry to see that. I once wokred duriong college as a cretaker for wn elderly couple. Basically staying with them at night to make sure everything was ok. The husband had dimentia, and for the most part, was pretty sweet. But he had numerous instances where there was more than I could do to help. I had to go to class and was unable to moitor every second. Things came to a head when I came home one day to find both of them and their car gone. I figured out that he had taken her to the hospital. I was panicked because he wasn't supposed to be driving, I was worried about her ( it was a minor thing, she was OK), and I was afraid he would get lost. Luckily I was able to pin down where he took her and got there in time to make sure they got back safetly. After that, I realized they needed more than I could do. I moved back home to finish classes. You did what was the right thing in your situation. Know what knows what difficulties you faced taking care of your partner. Sometimes the most loving choice is not the easiest or most popular. God bless you for doing what you felt was right and for getting opinions from all sides before making that painful decision.
photo
HUFFPOST BLOGGER
Marie Marley
Author, Come Back Early Today
07:52 PM on 05/27/2012
Thanks for your understanding. It is indeed a difficult decision and, as you mention, the most loving choice can be the most difficult and painful one. I see you learned a lot about this at an early age.
09:59 AM on 05/27/2012
When a family member starts to have problems with memory, exhibits unusual behavior, seems to have a change in personality, the first thing to do is have the person tested for VITAMIN B12 DEFICIENCY! By some estimates, as many as 25 % do not have dementia at all! It just recently happened in my family. Damage done by this deficiency is irreversible. We got to it before too much damage had been done.
11:51 AM on 05/27/2012
This is true! I am glad you found out about this. My father has early Parkinsons and I already have him on Vit B12. You cannot be too careful. I am happy you found information quickly enough!
10:45 AM on 05/28/2012
Injections of Vitamin B12 are necessary. Dietary supplements do not help as the person does not have the enzyme necessary to assimilate the vitamin.
01:01 PM on 05/27/2012
I'm glad that you brought up this issue. Too few people know that a severe vitamin B12 deficiency can cause dementia. The test is a B12 shot to see if the patient's memory improves. 25% may be too optimistic, but it should be something that doctor's routinely try.
09:56 AM on 05/27/2012
What quality of life do we have if we cannot remember from day to day, who we are, where we are, what the names of our children are, how to do the simple things that we've done all of our lives? Medical science keeps our bodies going long after our brains are GONE. Is that really living? To whom and to what end does it really serve?
photo
HUFFPOST BLOGGER
Marie Marley
Author, Come Back Early Today
08:12 PM on 05/27/2012
Having visited Ed's nursing home hundreds of times I actually did see patients, including Ed, who were rather contented or even quite happy despite their mental infirmities. But, of course, others were not. It's really on a case by case basis.
09:52 AM on 05/27/2012
This is just another long winded plug for this person's new book. If there was any love there, certain things would have been done to prevent further injury and damage; get rid of the vodka, make sure he was clothed, put i.d. with his name and address in his pocket, etc. What it boils down to is her "soulmate" was that only as long as he didn't become a bother, then it was off to Sunnybrook Farms. Sad story. Callous, selfish woman.
HUFFPOST SUPER USER
einnoc4
is my micro-bio still empty?...
11:15 AM on 05/27/2012
If he was really drinking vodka from before noon until 3AM, he is an alcoholic and it could have killed him to just "get rid of the vodka". An alcoholic of this magnitude needs a medical withdrawl, often times with medication to prevent seizures. Also, who is to say he wouldn't lose his ID? Burn the house down while no one was home? (This happens to both alcoholics and people with dementia as they start cooking something and then forget the stove is on). Wander into traffic? Don't judge until you've been in someone's shoes. How was she to work if she had to tend to him 24/7? Then the bills don't get paid and they are homeless? It is a heartbreaking decision to make - one I hope I never have to with a loved one. Hopefully family and loved ones are able to visit frequently so that the person in the facility is not alone. It's just sad for everyone...
photo
HUFFPOST BLOGGER
Marie Marley
Author, Come Back Early Today
07:57 PM on 05/27/2012
Thanks for understanding the many impossible tasks one has to try to do in this kind of situation. The facility Ed was in was wonderful and he really loved being there. He loved the staff and they were all crazy about him! It was a match made in heaven. And, yes, I did visit a lot! Marie
11:49 AM on 05/27/2012
I have a son (24) who was born with severe cerebral palsy. Cant walk talk feed or clothe himself. He throws tantrums because he is frustrated and doesn't understand the repercussions.
My husband, 8 years ago had a brain injury over seas. He was in a coma for 3 days. When he came out of the coma he was very volitile and was deaf. He had long and short term memory loss. Didn't know who I was. He drank and if I DID take the liquor out of the house (as you suggest is so damned easy) he would fly into rages. Him 200lbs, me 5" and 110lbs. He is still deaf, he doesn't drink and he is back to himself.
My father is in the early stages of Parkinsons. He WILL have some sort of dementia before he dies. He will also deteriorate into a shell of himself. Again because it is a brain condition the brain reacts differently than it normally would. Who knows how he will act/react. The brain is complex. Dad is strong willed. May be huge problems for mom as the brain changes. I will suggest to my mom, a home for my dad. I can't be sole caregiver and I wouldn't want her to try to be. They have been together almost 50 years.
I don't know what reply you expected, but I hope that you educate yourself before commenting on something you know nothing about in the future. Don't be a caregiver.
11:29 PM on 05/27/2012
Did you even read my original comment? Where I explained how I took care of my ailing grandfather with ongoing alzheimer's? HELLO!! I've been there. I know what it's like. And treatment with antabuse (disulfiram) will stop all alcohol abuse immediately. So I think I have all the education I need to care for a loved one with alzheimers disease. I suggest you educate yourself and be preachy and self righteous to someone else. I will repeat once more that if you love someone you don't put them in a home.
09:11 AM on 05/27/2012
This story doesn't make sense to me. If he was that demented he wouldn't know where he was and why did you have the vodka in the house. If he was that demented you should have put water in the vodka bottle. I had a mother who had dementia, it was heartbreaking. We were able to keep her home until she died. I really feel for people who have this problem and if you are afraid they are going to leave and get lost they need to be someplace safe. Don't feel guilty. They need to be safe.
12:18 PM on 05/27/2012
All brains work differently. All personalities are different. Liquor was the least of the problems. What if she would have taken if from him and he attacked her? What if she took it from him and he went through alcohol detox without the benefit of doctors? That could kill him. I don't know if your mom was violent, but some get that way as dementia gets worse. I am sorry your moms live ended the way that it did but happy that you were able to keep her at home. I am not sure how things will work out with my father yet, he is in the early stages of Parkinsons. But I do hope that whatever happens we aren't questioned about how or why we did things. It is obvious that love is what fuels whatever decisions are made in most of these situations. God Bless.