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The Ribbon - Care for Caregivers

Special Issue

November 4, 1998

Karen and I would like to take the time to thank you for your responses concerning your decision to move your Loved One into a nursing home. Due to the overwhelming amount of responses we are putting them all into this Special Issue.


From Jmwexler

Re your request for info on how the decision was made to moved our loved one (91 y/o aunt) to a nursing home: It was one of the most wrenching decisions I have ever had to make. I will try to be brief as I can, but this still may be too much information for you.

My aunt, a childless widow, had been living alone in Florida, and driving a car, up until August '97 when my husband and I, the relatives closest with her, traveled from SC to tell her, in short, she needed to move to the city where we lived in order for us to be of help to her.

She had been very depressed and had periods of panic and disorientation which were impossible to deal with via long distance.

We closed up her house and moved her to an independent apartment in a retirement center. It became evident after only weeks that she was paranoid, delusional, depressed, had mood swings, and early AD.

The next several months involved a horrible cycle of hospitalizations, moves to more supportive assisted-living places and frequent mental health out-patient care.

It was a terrible experience for everyone. I sought counseling, attend the local AD support group and was on Paxil for a few months. It was evident that an assisted living place was not working but the secured wing of assisted living did not seem to offer much more support. On a recommendation we had been given by our lawyer several months earlier, we called a Geriatric Care Manager in a nearby town--I referred to her as the "hired gun" actually a private geriatric social worker. It was on her recommendation, after meeting with my aunt and speaking with me, that we move my aunt to a new skilled nursing home facility in a nearby town that offered a secured dementia unit. It has provided the level of care that is necessary. Although my aunt is very depressed, sometimes very agitated, and always wanting to know when she can leave there (she forgets the unmanageable situations that preceded this place) my husband and I know it is the best place for her to get the support she needs. Luckily my aunt is in a position to afford the cost of the home and the ancillary needs, like lawyers and consultants. Although the decision and move and the adjustment to having her in the NH was one of the worst things I have been through, it has given us our life back. My husband and I keep telling ourselves that it is the best and only place for her to be. But is sure is a sad situation.

We would not have been aware of the facility in the next town, nor had the advice to go there without the consultant. The psychiatrist and internist in our town were unaware of this place. We just knew that what was available where we lived wasn't serving our needs.

I hope this may be helpful to someone facing the same choice. I would be happy to hear any questions. Jane Wexler, Spartanburg, SC.


From NO900

Mom died two years ago at age 98, I was hoping she would make 100. I placed her in a nursing home when she was 95 because of Dementia, it was a bad time for me because my husband didn't have any patience with her, she wanted to be near me and did some of the things that these people do, ex. soil her clothes and tear up paper and ask same questions over and over, I must say if I had her alone I could have managed but my husband scolded her a lot and that I couldn't accept because I new she wasn't herself. It wasn't long before she didn't even know me, that is hard to take but in a way I felt she didn't even know where she was. They live in a different world. I feel everyone must do what they have to do. I have her ashes and will always cherish her and hope that she will forgive me for not keeping her at home.

At this time my husband has dementia and I wish I could place him but finances won't allow. His memory is short lived, I mean he forgets anything you say in less than two minutes and even though I know he can't help it I can't take it. Mostly because of his lack of caring about himself, won't shower or change clothes, he smells and it is always a bitter fight to get him to change, he also hates to shave. I feel like running away and leaving him to fend for himself, he is not my husband any more, he is a total stranger to me.

I just had to get this off my chest, as you can see I am having a bad day.

About "The Ribbon" back issues, I found under "My files" all the past Ribbon letters and since I didn't get to print them all I never lost them. Thank you for listening


From RHONDA1872

You asked how we knew it was time to put my father-in-law in a long term care facility....Within just a matter of a few days he had entered the 3rd stage of AD. He couldn't get out of bed and had soiled himself through and through, my husband went over to help his mom get him up out of bed and changed, but her started swinging at them. For quite some time before this last incident he had been incontenent, choking on food, and being combative. He had begun to wander off about a year ago and didn't recognize any family. My husband decided for the saftely of both his mom and dad, it was time to place him in a nursing home. It is a horrible disease and such a terrible thing to watch someone go through. I pray my husband doesn't get it. His grandmother and aunt also had it.

Sincerely,
Rhonda Hovater


From JRNYWMN

Re your question about nursing homes.....

I'm having to make that decision right now. Some of the things I'm questioning are:

  • What state is MY life in right now (meaning, am needing to change careers, Janalee needs to return to work for money and sanity, how much $ would it cost to have someone stay with Mom then, etc)
  • Are we satisfying Mom's needs for companionship? (don't believe so)
  • how long could we afford to have Mom in a place that offers LOTS OF WALKING space--that's vital to Mom (lots of acreage = lots more money charged to the resident)

That's just off the top of my head, and think of much more, but that's a start for your article.

Ann


From BigBlueCVD

First, I want to thank you both for all of the time and effort you put into publishing this great newsletter. I don't get a chance to join the chat rooms very often, but through the newsletter, I at least can stay in touch with what is going on with others who are on the same journey I am. Keep up the good work. You make a big difference in the lives of many!

I wanted to respond to your request about placing a loved one in a nursing home.

My mother lived with me for almost a year before I placed her in a nursing home. I had her move in with my family when I realized, in spite of my denial, her condition was worsening. My husband and 16 year old son were both supportive of this decision, and I expected it to be a long-term solution.

It very quickly became apparent that she was much worse than I realized. I worked a full time job and had someone come into the home two days a week, but I worried constantly about her well being. I lost a lot of weight, could not sleep, and suffered from depression at my inability to control or fix the situation.

I never thought my mother would wander, but she did. She was returned to us by a police officer after a neighbor found her a few blocks away. At that point, I realized that she required more care than I could give her. I tried day care for awhile and while that made it less worrisome for me while I was at work, I was on the brink of exhaustion.

The decision to place my mother was the most difficult one I have ever made. I love my mother with all my heart. She is a sweet and gentle soul, and she was a constant companion to me. However, I finally realized I was powerless over this disease, and to keep her with me would not prevent the downward spiral. It would only stress me out and worry me to the point I would resent my role as a caretaker.

Once I came to peace with my decision (I had very limited support or interest from my siblings) I researched the options available and selected an Alzheimer's Home a couple of miles away. The day I placed her, I was devestated. I barely remember filling out the paper work. I was inconsolable. I felt like a failure for not being able to keep her with me. The first night she was gone, I felt a tremedous sense of loss and grief.

Her adjustment to her new environment was relatively easy. In fact, she enjoyed being around others who were just like her. My adjustment was slow and painful. It's been nine months, and I now realize I did the right thing for both of us. She is no longer able to feed herself, is combative, and doesn't know who I am. But, she is safe, and I have a lot more peace of mind and the ability to enjoy my family. I know my mother would want that for me.

My advice to others who are considering this is to seek support from your local Alzheimer's Association, to do a thorough job when selecting a facility, and to let go of the guilt. None of us want to make this choice, but as this disease progresses, round-the-clock care is necessary. My thoughts and prayers are with everyone who is faced with this issue. God Bless.

Chris


From JACKSANA

In answer to your question how did we/I decide to place mom?

This is a terribly difficult question, with an equally difficult answer.

I dont pretend to be able to suggest solutions to anyone else. This disease is so specific; our situations so personal.

Dad was Mom's caregiver. He died. Mom had had dementia symptoms for several years already ,so obviously, her care was something that my husband and I had discussed extensively. We seemed to know very early that moving her into our home was not something we wanted to do. At the time of Dad's death, we stayed with Mom, at their home for several weeks. (Funeral arrangements, financial stuff, you know) During this time, I came to realize that I not only didnt want her to live with us...she couldnt.

I/we found her annoying, scary, and sad. She was difficult to care for and disruptive. She was non-compliant and put herself at risk. I couldn't handle it. It was very obvious. I wasnt liking her, I wasn't therapeutic in reacting to her, and I was scared to death.

I was the only choice, and I couldnt do it. She was demanding to stay in her own home. That is what she wanted. It was then I realized, what she wanted was clearly not what she needed. What I thought I SHOULD be able to do, and realized I WOULDN'T be able to do, was not what either of us needed. And, over time, our needs would only increase.

I placed her.

Each of us loves the person we are making this decision for.
There are no common reasons.
For each of us, love makes its own reason.


From Metwilight

My Mother was only 62 years old when I was faced with making the decision of placing her in a Facility. I was able to gain knowledge through a local Memory Disorder Clinic, that offered a week long course, called the CAP Program. (Caregivers Assistance Program).

Because of my Mothers age, I found it very difficult to believe that she would have to be moved from her home. I tried everything. At first I would take her shopping, making a list of all the food that we bought. After numerous weeks of returning to her home and finding all the food there, I then tried labeling the food so that she would know when and what to eat. I think that the day when my Mother asked me what was in a Chef Salad I knew something had to be done. I began to worry about her health and her safety. All the precautions that I was driving myself crazy with were not working. I knew this, but I dreaded the alternative.

I went to the local Altzheimer's Association and I got a list of ACLF's. (Assisted Congregate Living Facilities) Some came more recommended than others, and that was how my search began. After visiting each one and speaking to the Administrator, I carefully chose the one that I felt could offer the care that my Mother needed.

It was on October 18, 1996 that I took my unsuspecting Mother for a ride. I told her I was looking at places for her closer to my house. I had already arranged with the Administrator for my Mother to be placed. I dropped her off, and was told to leave her for 3 days and allow her to adjust. When I turned to walk away, it took all my strength not to turn back and call it off. I knew that at this point, my Mother needed care that I could not offer her. I was a Mother myself of a then 7 year old and 2 year old. I was 35 years old with a family of my own to raise.

Prior to placing my Mother, I had to place my 2 year old in DayCare in order to take my Mother to Doctor after Doctor and to Lawyers. I chose a DayCare Center that I felt confident in. One that would be able to supervise and care for my Son while I took care of other responsibilities. When I left my Son for the first, I was told to leave him, and let him adjust. He may have cried at first, and I believe I did too, but in my Heart I knew he would be safe. I knew that I would be back, I knew that he couldn't be with me, and that he would be O.K. This was the mindset that helped me with making the decision for my Mother. No matter how hard it was, or how much it broke my heart, I knew I had to do it.

This decision is such an emotional one. I wish that things were different and that I never had to make some of the decisions that I've had to make in the past 2 years. But then again, I'm thankful that I was the one that was able to make the decisions.

Because there is noone else more capable of making these decisons for my Mother, than MYSELF. I have and always will make decisions in her best interest. For her Safety and her well being. I have questioned my God, why this has happened and I have also given thanks to my God, for allowing me to give back to my Mother, what she so unselfishly gave to me. I have made decisions that only a CARING person could make. I have become in a sense My Mothers Mother. And I thank her for being such a good role model, so that I could do this for her as she did it for me when I needed her.

For anyone that is facing this decision, I could only say, "BE STRONG" Try to handle the decision making process administratively, try to remove yourself from it. And last but not least, have faith. For what you are doing for your loved one IS AN ACT OF LOVE.


From COURTHEATH

We knew that it was time to place my aunt in a nursing home when she started to wander. At the time, my uncle was alive and my husband and I helped him with the decision. We live on a river and, of course, my aunt's safety was foremost. At first, it was very difficult to place her in a home but we are fortunate enough to have a very good care facility nearby. The care she is given there is excellent and her comfort level has been achieved. She has been there for three and one half years and is in the final stage of AD. Sometimes she asks about going home but, for the most part, seems comfortable.

If I can provide you with any additional information, please let me know.


From Marymax12

In answer to your question of how we decided to move my to a nursing home....

Mother had been getting progressively worse, crying all the time, not recognizing us for periods of time, we were her jailors, or the caretakers of this place, starting to wander. We knew she was not going to get better, but we had hoped to keep her at home for the "long haul" and hopefully not admit her to a nursing home. Well, when she started "running away" we realized we needed twenty-four hour care. We didn't know if she would get up in the middle of the night and take off. There had to be two people in the house with her at all times, if you went to the bathroom, she would make a break for it and the next thing you knew, the neighbors would be calling to let us know where she was, or you'd turn your back for a minute and didn't even realize she had snuck out of the house and we'd end up calling the police to search for her. With just my father and I here, and I was working full-time, it wasn't easy. My aunt would come up several times a week to stay with my mother for a few hours so dad could go to the store, cut the grass, or do things around the house. My brother lives out of state and it was not practical for him to be here all the time, so it was primarily dad and me. Well, we all know how trying it is. My nerves were shot, I found myself crying all the time and losing my temper with mom more and more. Dad isn't in the best of health and his diabetes was getting out of control with all the stress and he was taking tranqualizers to keep on a more even keel. One day I was just hysterical myself and drove to the county nursing home to see the new Alzheimers wing they had just finished. We were familiar with the nursing home place because my grandmother had been there for six years in the regular area, and we knew she had gotten wonderful care. After I talked with the nurse in charge and taken a tour of the wing, she gave me lots to think about. A few weeks later mother was getting so bad we couldn't control her. Tried all the techniques, distraction, food, walks, rides to her old home, etc., etc., etc. When we said she couldn't go to catch a bus to her old home she started to hit my father. We didn't know if this was just frustration or if she was starting to get into a violent stage. Dad decided that I should go to the nursing home and see what was necessary to have her admitted. My aunt went with me and I filled out all the papers. I knew they usually have a waiting list, so when I asked how long we would have to wait so I could prepare myself a little, they said they could take her the next day. I was stunned and not ready for that step yet. They told me I didn't have to bring her up until we were ready, but they did have empty beds. When I called home to tell dad, he had just had another go 'round with the police looking for mother and he was all worked up and said we would bring her the next day. He wasn't ready and neither was I, really, but we both knew we couldn't keep on like we were. Mother has been there for 14 months now and is doing quite well, as far as she can be. The Alzheimers is progressing more rapidly now, but she is happy for the most part, eats well, and is very well taken care of. We visit her at least three times a week for several hours. The staff calls us if there are any problems and have become like an extended family. Her records are completely open to us and we can ask any questions we like about her care, her eating habits, what medication she is on, how she is with others, etc. Every three months they have a patient review that we are invited to attend. One of nurses from her floor is there, someone from dietary, social services, therapeutic activities, laundry, and representatives any other department who might have contact with her. They are more than accommodating to any suggestions we may have. It was a shock to take mom there so suddenly, but now I'm glad we did, she had time to adjust to her surroundings and the people there rather than take her there when she could no longer make the adjustment and be more confused. I may have gone on a bit, but I think this answeers your question fully.

Marymax12@aol.com
aka Christine>


From InPainToo

You asked a question: My answer-My father and mother discussed their preferences before they became too sick to tell us. Dad said he never wanted to live with one of his kids....rather he would want to go to a nursing home. Luckily..he had plenty of money to have him put in an assisted living facility, where he stayed for 2 1/2 yrs before becoming so bad with his alzheimers that we had to place him in a nursing facility. His mother was in a local nursing facility and that is ultimately where we placed him. If I can be of further assistance.....please let me know. Joanie Rambo InPainToo


From Pershu

Also, you asked about decisions to have a loved one enter a nursing home. My Mom was admitted to a nursing home in July of this year. It was the hardest decision I have ever made in my life. I knew I could not bring her home and care for her. I have to work full time and she has to have supervision 24 hr a day. She is very confused and having hallucinations. No matter where she is, she always thinks she has to go home. So she tries to leave to go home...even when she was in her apartment where she lived for 32 years. There are still times when she is very with it and I start to tell myself she doesn't need to be in the nursing home. I almost persuade myself to take her out, then she starts acting confused and delusional again and I realize that I made the best decision I could have. I want things to be the way they were, but I know they never will be. I cry a lot. I'm sorry I have taken up so much of your time, but it feels good to put this all in words.

Thank you for being there to listen and to share.

God bless you,
Kathy


From LIZA513

This is my second writing of this difficult subject...why and when to place your loved one into a nursing home. My first writing is over 15 pages long and still going, so I started again. Here goes!

I am a caregiver for my 90 year old grandmother. She is my Mama to me. I love her very deeply and feel an enormous obligation to her for CHOOSING to raise me when the responsibility was not hers. I have always known I would be the one in our family to care for Mama because I have all of my life. Whatever she needed done, she called on me and I gladly did it. What I didn't count on was my Chronic Obstructive Pulmonary Disease (emphysema and asthma in my case). I had heard of Alzhiemer's Disease but didn't know much about it...just that it affected people's memory.

She lived in Alabama and I live in South Carolina. Since I retired on disability in 1993, I have gone back and forth between the two locations, spending more and more time in Alabama away from my husband, children and grandchildren. Mama would not come here to live. That was her home and she was going to live in it and nobody was going to tell her what to do. Since June of 1997, she has had to have someone with her 7 days a week, 24 hours a day. She would not let anyone but the family spend the night in her house. We would spend a week at my house and 3 or 4 at her house. Sometimes I got to stay two weeks at home before we went back, but this was seldom.

As Mama's Alzheimer's Disease progressed she got orally abusive and very, very demanding. She would not bathe and would not even let me give her a sponge bath. She was incontinent and would not wear Depends. Her house smelled of urine. It didn't bother her because the disease took her sense of smell also. It bothered me even more when my house started smelling the same way. Hubby wasn't happy about it either. She would not even change clothes until I absolutely made her let me wash them. We would always have a battle over it...sometimes I won...sometimes she won. She also quit eating except for sweets. I tried to coax her to drink two or three Ensure supplements every day. I was grateful if she drank one and overjoyed if she drank two, but she lost weight anyway.

My health continued to deteriorate. Mama's care became too much for me to handle. I could not even lie down and rest...I am sure a lot of you are familiar with that and the reasons why.

My husband became more and more withdrawn. He would not share his feelings with me about Mama. However, I knew the whole situation was unfair to him and was so torn. He would only tell me to do what I felt I needed to do. He did express concern for my health from time to time as did my children. My daughter finally told me that I was shortening my already short life expectancy and it was just not right for me to do that to her and my grandchildren.

I tried to be everything to everyone. I felt love and anger, respect and resentment, relief and guilt, devotion and betrayal and on...and on. My emotions and reasoning were constantly at war with one another. I searched and searched for a happy outcome for everyone, but never could truly find one. I asked other family to help by caring for Mama for one or two months to give me a break. No one would help me care for Mama. I finally made my decision to place her in the nursing home after everyone had refused to help. In frustration I had also picked up a chair up and threw it down the hallway, went and picked it up and threw it back up the hallway. I had never, ever done anything like that in my life before. I knew then I had to do something or break totally into pieces.

All of the above went into my making the decision to place Mama into a nursing home. I had always said that I would never put her into one and ended up eating those words. I can tell you this....there are NO WORDS to describe the anguish I went through while making this decision and placing Mama.

The week she was to go into the home, I cried for three days and night. It was the HARDEST thing I have EVER done in my lifetime. I still do not know if I could have went with my husband and daughter the day we took her if my brother had not come up here when I called him to come help me put her in.

Mama does not really understand where she is. She only knows she is not at home and wants to go there. She gets baths now and doesn't fuss most days about it. She wears her depends now and does raise the roof when they change her. They took away her 'snuff' and sweets and she is now eating better...not good, but better. She will do for them and let them do for her what she refused me. She now only gets about by wheel chair and seldom gets out a complete sentence that can be understood. Sometimes she recognizes me and sometimes she does not. The disease is progressing. She had a lucid moment about a month or so ago and looked at me and said, "Liza, you know...something is wrong with my mind and I can't figure it out." I just nodded my head and told her I knew, but she was already talking about the tree outside her window that she thinks she planted.

She will be in the NH a year this coming January. I still feel pangs of betrayal of trust and guilt and anger, too. I know that I am physically unable to care for her, but I still want to be able to do it. I am hoping that by going ahead and placing her, my health will hold out to make sure her needs are met until she goes onto a much better place. My heart breaks for this very independent woman who now must depend on others for her care and do what others tell her to do. That is just not my Mama. She would rather be dead than live like this...with her mind mostly gone and not in HER home where she planned to live until she died.

Did I make the right decision? Yes, I think I did, but only time will tell. I know some parts were right. I know the decision was good for me and my husband because I feel sure he would be gone by now if the situation was still going on. He is a good and loving husband and very protective of me. He later told me that he felt the same way my daughter did, but he didn't want to influence my decision. I know the decision was right for Mama as far as her health is concerned. As far as her emotions....well...Alzheimer's has ruled those more and more in the last few years. As far as me, I know it was the right decision for my physical health. Like I said, emotionally I still want to be able to take care of her and be there with her every day. I have had a hard time accepting it, but it gets a little easier with time.

Each caregiver has to look at his/her own situation and make the best decision they can. We can't always do what we want to do in our hearts. Please take your family into consideration while you are making your decision and how your decision will affect them. Please don't put yourself last, like I did. I can assure you, it will affect you health if you don't get some time off for yourself. Would I change my decision if I could? No, I would not.

There are no 'perfect' answers in this imperfect world. We just plod along and do the best we can. I do not envy anyone having to make this decision. I have known the pain of it very deeply. I wish you good luck and if anyone needs to 'talk' about it...feel free to e-mail me.


Each day someone is faced with this decision. I hope you know you have helped someone today. We feel through your letters, the pain, the grief, the relief, and most of all the LOVE you have gone through in making your decision. Thank you for sharing with the rest of us.

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DRMOM1955)

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