The last time I was there she kept touching my hair and the buttons on my shirt as we 'visited'. Mom doesn't talk much anymore. She does say some old familiar phrases during a conversation and some of them are in the appropriate places. There are times when she tries to express something that she gets a few intelligible words out, but usually they are all nonsense words, so there is not a lot of meaningful conversation.
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| This quilt was made by Mom's mother and sister. |
My career was teaching special education, most of it in the elementary grades. Interesting enough, this has probably prepared me better than anything besides a medical career, to deal with Mom's decline. She gets an 'evaluation' on her performance every time I see her, comparing abilities on speech, movement, alertness, etc. When I leave each time I seek out a staff member and give them my 'report' of what I observed.
This is where the fidget blanket comes in. When I reported the concentration on fingering my hair, shirt and buttons to the nurse on duty, she said they had discussed how to help another resident that morning in their staff meeting, that had the need to fidget with things. They were thinking if they could provide this person with something to feel and 'do' that may help them be more comfortable and peaceful. The nurse pulled up these pictures on her phone.
I asked her to send them to me so I could make something for Mom. She was surprised when I said make, so I explained that I grew up sitting next to Mom at her sewing machine while she made my clothes.
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| Mom made this for me when I was a baby. |
When I got home and explained the blanket to Frank, we got to work picking out fabric and items of varying textures to put on the blanket for tactile and visual stimulation. Here are some of the things we came up with.
I put four layers of quilt batting in between two pieces of fleece for the base layer.
The edges of the batting were rolled up and tacked down to make a bump or edging kind of thing around the edge.
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| This yarn came from Mom's house. |
It looks kind of funny to me, but I hope Mom likes it.
I went through a long time of mourning when Mom first went in the nursing home. You see, for over eight years, she lived about 200 yards away across the pasture. Her illness and the regular 60 mile round trips to the nursing home have impacted our lives in ways we never thought of or planned for really.
When this disease started to unfold in earnest, there were serious disagreements with other family members about Mom's help and care. Unfortunately, by my choice, some of these differences have lead to permanent disconnect with some family members.
In the effort to understand and help Mom, Frank and I have read several books on dementia and dying. We have also made plans for our own mortality. Many things have come and continue to come from this ongoing experience.
We hope to hear from others how they have, or are dealing with dementia in their loved ones. There have been many people that have told us they are so sorry we are having to go through this, and we appreciate the sympathy, very, very much. What I am hoping, through writing about this, just like about preparing for anything, is to share experiences and glean some knowledge and insight from others, because I sure don't have many answers about this uncharted path. So, I look forward to hearing from you.
Until next time - Fern
Having to put both my parents, at different times and for different reasons, into a nursing home was one of the toughest decisions I ever had to make. Neither had dementia, but sometimes I wondered if it might have been easier if they had. Mother never did forgive me, but Dad adapted and was relatively happy until his death at age 94.
ReplyDeleteDad's older sister was in the same nursing home while he was there. She had a form of dementia in that she would ask the same questions over and over again, unable to remember anything for more than a minute or two. Dad would sit with her and answer those questions for hours at a time. I asked him once if it bothered him to answer the same questions over and over again. He said, "Why would it? She is still my sister and I still love her."
Hi, Vicki. It was extremely difficult at first for Fern and I both to place her mother in a nursing home. At first, when her thoughts were still lucid, she asked me what I thought about 'this place' and I told her it seemed like a good place to be. I was being very honest.
DeleteFern and I wanted her to be in the nursing home earlier, but the decision was not ours. The oldest sibling had power of attorney and refused to even consider the thought. You see, her diet was terrible, she was having imaginary conversations with Vice President Pence and many generals. Living by herself was a safety and health hazard.
The nursing home to me, seemed like a good, safe place. So, yes, it was a difficult decision, but it's the best thing that could have happened to her. She has slipped daily mentally and physically, and it's very difficult to watch a reversal type process from adult back to child. And the physical needs are very similar. But, she is in a good place.
Thank you for sharing, Frank
My grandmother was in a nursing home (by her own choice) with Alzheimer's for several years - such a sad, sad disease! She never lost her sweet, sweet spirit though, and for that we were grateful. I think your fidget blanket may be just the ticket for your Mom! Lots of textures and "doodads" to fiddle with and to perhaps spark some memories! Great job!
ReplyDeleteThank you for your kind words. The blanket has different colors, shapes, different textures, some plastic, cloth, metal, different things to stimulate different parts of the mind. I thought Fern did a really good job on that blanket. And it had one ingredient that you can't buy anywhere. It was made with love.
DeleteThank you for sharing your experience. Frank
I found that folks, even in my own family that want to disagree with how my sibs and I took care of our mom, never had to take care of some one with Alzheimer'sl, that is truly a eye opener.
ReplyDeleteit is day by day.
You're right, people that don't have a clue about what they're talking about have said some of the most cruel things. Neighbor's comments, our local pastor has made rude, public comments behind our backs. Siblings have been unbelievable. People that have never been to see her once comment about how horrible her conditions are. I have names for these people that I can't share here. And I have to really control my thoughts that I don't hope these people burn in hell. It's unbelievable the things people will say with absolutely no knowledge of what they're talking about.
DeleteI hate to sound negative. Frank
I adore your fidget blanket. No matter how much or in what ways the dementia effects them you still love and respect them. We had to put my mom in the nursing home due to Alzheimers. She fought, cussed and punched the whole way there and I do mean that, physically, but we honestly had no choice. Honest. It was devastating for all of us. I'm thankful that the 4 of us were all on the same page. She was a total danger not only to herself but quite possibly to those around her. She changed so dramatically that, well, it was incredibly sad. One day she got out of bed at the "locked facility" and had a stroke. A day later we lost her. We all loved her so much. From what I was told, a stroke may have been a blessing since she was in such good health. I don't know. It's left me with many fears, not the least of which, the possibility of going down that same road. You are blessed to be able to understand at least a little of what was going on, we were not and it was heart rendering. I will keep you in my thoughts and prayers.
ReplyDeleteNina, Mom got very paranoid and told me many times that she wanted to die if the Lord would just take her. She had to be heavily medicated at the home for a while for combativeness, but has been able to quit those now that she is non-ambulatory. She fell a number of times trying to 'get somewhere'. You're right, it rends the heart. But, and please don't be offended, you and your mom are the lucky ones. To see this woman who made my clothes, taught math and music, sang at church, played the piano be reduced to who she is now is beyond sad.
DeleteI have a cousin that was a hospice nurse. She told me the hearing is the last to go and to always talk to Mom even if she didn't respond or seem to understand. She also told me to tell Mom it was okay to 'go' whenever she and the Lord were ready. So, I did. I told her not to stay here for me, I would catch up to her in heaven when it is my turn. Mom said, "Ok."
Some people won't agree with me, but I really believe life should be quality over quantity. Frank and I talk about that regularly, whether we are applying it to one of our animals or ourselves.
I pray you will have peace over your Mom's passing. And fears of following in her footsteps? I know what you are talking about. But, we don't get to choose do we?
Blessings, Fern
The fidget blanket would be a great project for the ladies groups that meet to sew quilts, baby items, etc. Wouldn't it be great to deliver some of these to the Alzheimers facilities!
ReplyDeleteThat's a good idea! Thanks for sharing it.
DeleteFern
My mother-in-law lived with us for a year and a half. She had Alzheimer's and I took care of her every day. I would tuck her into bed every night and we would pray together. She never knew my name and called me "that girl". "Where is that girl?" We had to put her in a care facility because she started falling. The first time she fell I wasn't home. I was babysitting for my daughter while she was in the hospital having baby number two. Talk about being pulled in different directions by different generations! MIL was a big gal and I couldn't get her up without help. We cried when we left her in the nursing home. It was so hard. She didn't understand what was going on. We visited every week and we were able to take the dogs into her room to see her. She loved seeing the dogs because when she lived with us she "took care of the dogs" for us. That was her job. I have seen over and over how one family member takes care of a parent and the other family members criticize and complain about the care but do NOTHING to help. It breaks families up all the time. If you don't like what is going on then get involved, put in some time and/or money. It is so sad. My MIL never remembered that we visited. That was very hard on my husband. You can't make them remember that you were just there so you can't beat yourself up over it when they complain you never visit. Enjoy the time you have with her. You are doing everything right. My prayers are with your family.
ReplyDeleteHi Brenda. Thank you for your prayers, and I mean that earnestly. Many of the things you just commented on hit the nail on the head. I'm sorry that you had to leave your MIL at a nursing home. Me being a son-in-law, it's very difficult on the child of the parent also.
DeleteFern does not have power of attorney, and now it's a guardianship. The oldest sibling has complete control and Fern will not allow me to tell you some of the things he has done to punish Fern. We live in a sad world and there are some very sad people in it.
I'm not trying to sound flippant, but these are the cards we have been dealt. We ask ourselves frequently why do these things happen? What are we supposed to learn? Why is God testing us? Just because we don't know the answer doesn't mean that there isn't an answer. Maybe someday we will know what it was for.
I'll get back in touch now. It's hard being a tough guy when you have absolutely zero control. Thank you for your prayers, may God be with you.
Frank
My mom had Alzheimer's and was in a nursing home for 6 years. I lived about 250 miles from her, and after she died I thought of something I wish I would have done. She was a Christian and raised on the old hymns such as 'Holy, Holy, Holy, 'Onward Christian Soldiers', etc. I wish there could have been a cassette player going in her room playing those old hymns. I think she would have enjoyed it. Maybe some music from your Mom's heyday would comfort her and give her good memories. Your fidget blankets looks like a great idea.
ReplyDeleteJoy, your comment brought a big smile to my face. You see, Mom lead the music in her small country church for about 40 years, and sometimes she played the piano as well. I don't remember where the idea came from now, but somewhere along the way I figured out how to get some music on my phone. I don't do much on my phone compared to most folks.
DeleteMom and I, or sometimes just Elvis and I, sing Amazing Grace every time I go see her. I have Elvis singing Amazing Grace with some good piano music on my phone. The interesting thing is, when Mom sings, she sings harmony. When she lead the music at church she always sang soprano, but for this she sings alto. She doesn't remember many of the words anymore, but some days are better than others. Sometimes she just closes her eyes and smiles.
I also read the 23rd Psalm to her almost every visit. She has it in needle work on the wall of the room. It's the one she did for her mother when she was a new mother back in the late 1950's. Mom has a hard time praying anymore, but still tries on occasion. It's a good thing. It's hard to describe. But I think she and I both enjoy it even though we do the same thing each time I am there.
The other thing we do is listen to a voicemail from her 87 year old sister. Mom is the youngest of seven siblings and this is her last remaining sibling. We have a routine we usually follow. It seems to help her to have something familiar.
Thanks, Joy. I appreciate your sharing of ideas.
Fern
Thank you for sharing. I think a fidget blanket is a great idea!
ReplyDeleteI wish I could put a picture in the comment section, Teresa. She seemed to really like it. When one of the ladies that works there came by and admired her blanket, Mom said, "She put lot ........" and tried to say the word effort, while looking at me. That got me.
DeleteFern
I can emphasize with you all as my dad has Alzheimer's and is in a nursing home. Most of the time he doesn't use our names, but sometimes he knows who we are. The summer before we moved him into the home, four of us went to clean up his yard. When we got out of our trucks, he came out the back door glaring at us. After a home he got a huge smile on his face and said, "You're my family." Another really funny memory I have is from a day he was mad at my stepmother, and sang a little rap song about how she thinks she knows everything, but she doesn't know much. My sister and I laughed so hard, we cried!
ReplyDeleteWell, SBR, you know what it's like. Yes, Mom rarely uses my name anymore and sometimes thinks I am her sister, Ava, that passed away last spring. Mom hasn't been in the argumentative stage for a while now, which is nice. There is that glimmer of recognition sometimes, but not a definite link of mother/daughter.
DeleteBlessings to you and yours as you travel this path. I can only see how we will be stronger because of it. Fern
I am so sorry you're going through this.
ReplyDeleteMy mom has Alzheimer's, and should be in a nursing home. Sadly, my sibs and my dad are not going to let that happen. Lots of darned unfortunate family dysfunction, and I have no say in the matter. All I can do is pray as I watch the train come barreling down the tracks.
God bless you and your family as you deal with this trial.
Unknown, I would not wish this ordeal on anybody. I know that's easy to say, but it's true. Try to keep your head above water and your senses about you. Try not to let it destroy your family.
DeleteThere are multiple books about the subject, we found most of them written on an academic level, but we found some that dealt with caretakers and the health of caretakers. There are a number of good articles to read.
This is hard to say, but the most important person you need to take care of is you. Anger, guilt, shame, these emotions can not only wreak havoc on your emotions, but they can cause your physical deterioration. Take care of yourself.
As mentioned earlier, the cards will fall where they may. When Fern and I accepted that we had no control, not just of the things that were controllable, but of the entire situation, and we dealt with this on a personal level, it became much easier to accept.
I'm sorry for you, but take care of yourself, it's not your fault. Don't blame yourself. If you believe in a higher power, seek refuge there.
Take care. Literally. Frank
Great to see you blogging again! Sorry to hear about your mothers dementia. If I could, I would encourage you to check into a book on dementia written by my cousin. She was inspired by her experiences working with residents in a care center. It is a unique perspective on how to deal with a loved one that suffers from dementia. Creating Moments of Joy written by Jolene Brackey.
ReplyDeleteThank you for the book resource, you can never have too many books, Jerry. And thanks for the welcome back. Fern
DeleteMy aunt that I was closest to growing up had Altzheimer's. She was my Dad's older sister by 16 months. They were very close. One blessing was that both her husband and my Dad had passed before the illness really took hold of her. I'm grateful that neither had to see her with dementia.
ReplyDeleteThe hardest time for me was when she became nonverbal and was aware of her illness. She'd get so frustrated when she couldn't communicate verbally. At that point, she still recognized people and she could speak but her speech was gibberish. She would be so frustrated it just broke my heart.
One of my cousins lived with her the last five years she was in her home. On one visit, when my aunt was nonverbal, I took them out to a Mexican restaurant. I was traveling with a friend and we had margaritas with dinner. My friend noticed that my aunt was 'eyeing' her drink so got her a straw and they shared the drink. If my friend wasn't drinking 'her' share fast enough, my aunt would start tapping the base of the glass so she'd get to it and then my aunt would take her sip. It's one of my fondest last memories of my aunt - so even though she was nonverbal, she was able to communicate.
And, then she passed into another stage where she didn't seem to be aware. She didn't recognize people anymore but the blessing was that she was no longer frustrated any more. Sad for those of us who loved her, but a blessing for her.
The last two years of her life, she was in a nursing home. At the end, she seemed at peace.
What a cruel disease though.
SJ in Vancouver BC
That glass tapping story is a good one, SJ! Mom doesn't seem to recognize a lot of things anymore. Like when they changed her regular food and a fork to pureed and a spoon. I was there the first time she had her pureed meal and she didn't miss a beat. Didn't even notice. I was really surprised.
DeleteMom still makes old familiar faces when she can't get a word out, but seems pleased when she finally says something even though it doesn't usually contain any real words beyond old familiar phrases.
You're exactly right, it is a cruel disease. Thanks for sharing.
Fern
What a wonderful idea. And I loved seeing your sewing/craft room. One of these days I hope to get our spare room cleared out of building materials and do the same.
ReplyDeleteYou'll get there some day, Leigh. You two have a lot of building going on. Then when you do, you can put your new/old treadle sewing machine in there.
DeleteNow that I am retired, I don't make new dresses for work each year. There is a lot of fabric in there that doesn't have a particular purpose. Then, ideas like this blanket come along, so you never know.
Take care, Fern
My mother was diagnosed with MS when she was 42. Hers was aggressive and akrhough it did not cause her death at age 55 it did cause several strokes and left her unable to speak or walk. It became severe enough we had to put her in an extended care facility. I used to take my gentlest horse, Champ, to the parking lot nearby and the nurses would wheel patients out to see and touch them. Mom would just hold Champs nose and he would stand dead still. It was a connection that never needed words.
ReplyDeleteYour fidget blanket will be like that when your mother holds it.
God Bless you both for doing the right thing not the easy thing.
Your horse story is very touching, Fiona. Sounds like it meant a great deal to your mother. I got Mom to laugh yesterday when I went to see her. That is always a bonus during a visit. I don't think she knew who I was, but we had a good time anyway. According to the staff, Mom 'fidgets' with the blanket numerous times a day. They tried to hire me to make some for the other residents, but I don't want to get into the sewing business.
DeleteI am sorry you lost your mother is such a difficult way. Blessings, Fern