Living with dementia: the long goodbye | DW Reporter

More Reporter: www.dw.com/en/p...
44 million people worldwide are living with dementia, an incurable and progressive disease. Their families face many difficulties - including the decision regarding how long they can care for them at home. Report by Birgitta Schülke.

[@Kiwiwanderer]

Wow what an incredible woman, wife, mother. When he cried out you could see the emotion and that he wanted to express himself. Heartbreaking.

[@outfromtheshadows]

This woman is an angel.

[@michelledawson566]

She has a lot of strength he is very lucky 💕🌈x

[@charlesfredrick4789]

My exact thought, these caretakers are angels on Earth. The bond of love is the strongest Force. In the universe.

[@johnsonjack4611]

*DEMENTIA CURE:* Thanks for all these comments and for sharing some of your own story. I am a 74-year-old man, I was diagnosed with Alzheimer’s disease 15 years ago, I always like to use my experience in a positive way to educate others. It is common knowledge that Alzheimer's robs people of their ability to remember. Having dementia for me was lonely, isolating and scary. But when people share their stories, it can provide inspiration, hope and a welcome reminder that you are not alone. Homeocure Worldwide is natural cure medicine. The professional had earlier told me there is no cure, I asked professional to explain this to me? They said it is a miracle. All the patients I have directed to Homeocure Worldwide return with thanks. Don't let drug companies keep you as a slave to their mediocre medications. Don't let them tell you there's nothing that will help you. Today I can say that I'm living life instead of surviving it. For more info, contact Homeocure Worldwide or drmakusm@ gmail. com

[@samahf1669]

Indeed!

[@johnsonjack4611]

@@samahf1669 You can read more on homeocureworldwide.blogspot.com

[@fayekeller7411]

Amazing woman! What a blessing she is to her whole family!

[@brendaseager7371]

She is a wonderful person with a good heart.

[@alanazarin7761]

Bless her for still loving and caring for him. This is what in sickness and in health, til death do us part means. You are able to look that person in the eye and say, I will always love you, no matter what happens to you, and then you actually follow through.

[@ireneduke5022]

Many of us hold on to our loved ones bc of self. I went thru this with my mom -- she had heart congestion. I held on as long as I could until I had to accept that mom couldn't be by herself at all. I never abandoned my mom. I would see her at facilities almost everyday. Mom died in her sleep on May 24, 2006; I still miss her EVERYDAY and look forward to being with her one day.

[@denisarsenault505]

You are a very caring person...may your mom rest in peace...

[@Yolduranduran]

My dad has turned into a little boy. He is cute and sweet like he never was before. We are ai grateful to still have him♥️

[@prewgeeq7416]

She's an angel indeed , is there no cure for dementia really...

[@nunothedude]

There problably will never be a cure, unless you can stop the brain from degrading, and im pretty sure theres no medicine that prevents age.

[@Itsme-zi8zt]

I take care of my nana I came home in March ❤️ she’s an amazing woman, very hard job hats off to you beautiful

[@lydon65]

What a lovely lady.

[@lucysmith6827]

So many thoughts about this situation. One thing for sure, she and her husband raised a very kind and compassionate daughter. Love is a commitment, a verb, an action. This family understands that.

[@mindy2215]

That is what true love is, caring for the loved one until the end. Not an easy task when real love is present, just imagine if there is none.

[@globe255]

It is much worse to be diagnosed with dementia and have to live for many years, than it is getting cancer and be yourself all the time.

[@globe255]

@-- I'm telling it as I see it.

[@johnsonjack4611]

*DEMENTIA CURE:* Thanks for all these comments and for sharing some of your own story. I am a 74-year-old man, I was diagnosed with Alzheimer’s disease 15 years ago, I always like to use my experience in a positive way to educate others. It is common knowledge that Alzheimer's robs people of their ability to remember. Having dementia for me was lonely, isolating and scary. But when people share their stories, it can provide inspiration, hope and a welcome reminder that you are not alone. Homeocure Worldwide is natural cure medicine. The professional had earlier told me there is no cure, I asked professional to explain this to me? They said it is a miracle. All the patients I have directed to Homeocure Worldwide return with thanks. Don't let drug companies keep you as a slave to their mediocre medications. Don't let them tell you there's nothing that will help you. Today I can say that I'm living life instead of surviving it. For more info, contact Homeocure Worldwide or drmakusm@ gmail. com

[@margiemejias5761]

I feel related to this since I'm living this sadness with mom. It is so hard to see your loves ones fading in front of your ejes and not be able to do anything. In my case is scared me so much that I to started to have memory problems too. I pray God to keep my mind healthy so I can take care of mom. It is really a hard task but love can work everything. God blessed this lady for her courage

[@Joyce-id3dr]

That least you are a child who is stepping up to take care of your mom. Bless you.

[@johnchincotta1qwdb15]

Heart breaking

[@sallyclay1974]

I retired in Danbury Ct, in 2006. My younger sister retired in Ridgefield, Ct, in 2014, at 64. She was a journalist for NBC, in Rockefeller Center for over 30 yrs. She got the Peabody Award, and was a world traveler. She started forgetting things almost immediately. She was diagnosed with Lewy Body dementia, which is part Parkinsons. Now, 5 yrs later, She is wheelchair bound, diapers, spoon fed, and round the clock caregivers, in her home. She is almost non verbal. Her throat is starting to constrict Blessings and prayers to your friends and family.

[@lesliegraff3136]

Sally Clay ❤️❤️❤️

[@denisarsenault505]

So sorry to hear about your sister...terrible disease...

[@lonsdale9239]

You are such a kind devoted beautiful women. Bless you.

[@patriciabilinkas3911]

My dad had dementia and was just like this. When he passed, my sister and I looked at each other and said that WAS the longest goodbye. Very sad!😢

[@infinitepeacemusic]

Its crazy that people as young as 50 can start seeing signs of dementia. For me, working at a care facility over the years, our youngest was in their 60's. But no matter the age, I've also noticed there are 3 common things in which brings them a sense of peace: Music, children, and pets. Thank you for the video!!

[@leelee2350]

My sister has early onset dementia and she went downhill so fast, she's in the final stage of it now, can't walk or talk any more.

[@stephaniemcbroom9615]

What a kind genuine woman that truly loves her husband....this disease is heart wrenching.....I pray for a cure....daily!!

[@ericmartin6036]

This is a great woman

[@freespiritwithnature4384]

Oh God Bless This Woman, Shes a True Angel. Yet there’s a part of him,that knows she’s helping him . She is example, we should all be following,if it’s possible,. She also has limitations. God Bless You @ Your Family. He’s Trying to help ,god Bless him . Please if anyone’ has any updates on this beautiful family,let me know,I’m still praying 🙏. XO XO.

[@patriciakelly69]

You are a wonderful person and you are right. It is so important for you to have space and time to yourself. It’s important to maintain your health. I cannot imagine what it must be like. Take all the help you can. X

[@margarethoward1752]

God bless you over and over..awesome woman!

[@vanessalowe3819]

A very, very special family. So much love. This caregiver is outstanding.

[@奈唹]

It's such a cruel disease...she is so strong, seeing a loved one getting lost to dementia is hard for anyone and she goes as far as taking care of him around the clock

[@ReeRee_is_watching_you]

Sie macht das echt gut... Es gibt ganz ehrlich nur sehr wenige Menschen für die ich das machen würde...

[@rosejacks8662]

What a loving wife!

[@mabellee424]

Caring for a Alzheimer patient is extremely hard and difficult. This is more than 24/7 ! 🙏 for sharing .

[@davidthomspson9771]

My mom and dad are going through this.Its heart wrenching.It gets worse and worse over time.My dad disintegrates mentally while my mom is suffering too taking constant care of him.

[@denisarsenault505]

How is your dad and mom doing if I can ask?

[@venusr9810]

She loves so much bless her

[@jacirogers9109]

What a strong woman!

[@albertmartin1716]

I admire his wife. A strong woman, cares for her husband. A woman role and involvement in a family have been proven to be fundamental and essential in the well being of the family. Why it took so long for the international "rhetoric" to acknowledge women and the empowerment of women.

[@arleneolvey5710]

God bless this woman and her family!

[@caropapa]

Watching this angel at work in the care of her husband, has given me hope that i will be able to help my dad in the care of my mum, my mum is nearly 90 and my dad is 3 yrs younger. Mum was diagnosed about 3 yrs ago and is at the slight forgetfulness stage, i dont know if there are different degrees of Dementia i have not asked or looked it up, My dad has to help mum in the shower and put her socks on and do her bra up, but she is capable of the rest, she does do cooking sometimes but they as she puts it are disasters but at least she try,s. There was one video i watched where the wife has medium dementia and they like to travel, she gets a little mixed up about her clothing so each daily out fit is put on a hanger with her bra, knickers and socks in a plastic bag and put on the hanger with her clothes, what a great idea, that is something that i could do for my mum when the time comes. Please excuse my ramblings i hope you all dont mind.

[@raffaellavitiello1762]

What an amazing woman

[@servantsofthemessiah720]

Amazing Wife He married well.

[@loraleepooley4160]

This is my worst fear. I'm 58 and am having trouble at times with word recall. Don't know if I should worry.

[@GiGitteru]

Hey, how are you doing now?

[@denissssss8579]

@@GiGitteru dead

[@josephinebrevig8748]

Carers are such incredible human beings. A have a severely Autistic son...no respite at the moment Covid restrictions has made things worse.

[@Bahutpaisaamerahochuka]

Usually i dont cry bt this video.. Universe pls give them the strength to lead a better life And make it best frm better

[@herewego1115]

Good luck and prayers. I pray the best for you both. Looks like he likes the feel of different textures. God bless

[@jacqepapara7898]

Lovely couple true love for her husband

[@charlottebarros5773]

That’s a good wife until death do us part god will bless her

[@macclift9956]

Stressful for her! I hope she gets outside help to cope with him! She *has* to take care of herself and her own needs as well! It's very clear she loves him! Lovely person! Lovely family! It's normal to feel aggressive and defeated sometimes!

[@lakshaybajaj4454]

This women is wonderful

[@rachelfrees1268]

Rubbing is a familiar memory. My mom loved a baby blanket with silk edges. She rubbed and rubbed the silk edges.

[@stuartwrigglesworth9339]

Fantastic woman one in a million.

[@Anth4044]

That's Love God Bless them Both

[@deniseg-hill1730]

At least in Germany you get decent allowances and very good health care

[@DONALD1951]

Denise G- Hill wha t makes you say that. The care is from the wife.

[@ffm60313]

@@DONALD1951 you get an allowance if you take care for a family member. ever heard of that? this is what donald trump, for example, clearly does not want.

[@gaylenemorley916]

I have known 3 ladies. My sister and a my sister in laws mom. And helen lyons. Who all got the illness and they all died from it. I do miss them all

[@elapaszczynski8292]

What a nice lady

[@nunothedude]

Id rather die than be remembered like this

[@jermane2501]

Dementia feels like being in another dimension not knowing how to use it and the dimension is the real world

[@CMchyy]

God Bless you all.

[@bonnieyoung4037]

three children should be helping that mother take care of him even if it's an hour a day

[@ellenherman9543]

Not all children can help. Nor should they be expexted too...some kids are no good as caretakers

[@ffm60313]

in germany parents tend to allow their kids an autonomous life when they are starting to study - or even earlier. this mother wishes that her kids don't spend too much time caring for their father. i agree with her view.

[@ianarn]

I did! I lived at home with my father who had Alzheimer’s and saved him from traffic on many occasions! Even though others condemned there is a lot of ignorance surrounding this condition.

[@trishayamada807]

Bonnie Young children do not owe their parents anything. We choose to become parents, our children did not choose to be born. And their mom SUPPORTED them moving out. She wants them to have their lives. Hooray for not being selfish.

[@valeriegriner5644]

I totally disagree. They need to get on with their lives because there is absolutely NOTHING they can do for this poor man. He will eventually need to be cared for in a facility...if he's not blessed with dying at home. I guess you want the entire family to suffer. I'm sure that it traumatizes the children to see him this way. If he could speak, I'll bet he would totally agree with me.

[@bagscomeandbagsgo2343]

That’s for sure ... long is an understatement.

[@adventureswithwool-johanne7755]

Yes, the children should be helping...but there's a very very puzzling question and no one is asking the right question...WHY is dementia becoming so predominant and extremely common...this is a very telling social and medical question. This man looks so young (about 58) and he looks healthy..it's disturbing. The brain the final frontier. Obviously, there's basic brain chemistry problem because of underlying lack of nutrients/amino acids, magnesium, B vitamins, folate esp. i am actually getting very angry watching this...why aren't medical funds being funneled towards brain research??

[@elainewarren8552]

Johanne Robichaud...Well said and so true!

[@2eleven48]

Johanne....if you are British, you need only to go the website, alzheimers.org.uk. to find your answers. There is an American equivalent. Robert.

[@DONALD1951]

They are..millions upon millions..they can’t figure out the cause or cure.

[@ellenherman9543]

I disagree that children should be helping... that's only true if they can...not everyone can handle alzheimers.

[@jeanettesdaughter]

Johanne Robichaud I understand your anger but there are no obvious connections in the study of the causes of dementia. The causes are multiple. Some of it is age related, some of it vascular, some related to brain trauma, a great deal genetic. Research is in the early stages and the aging population in developed countries is outstripping knowledge of the brain and all neurodegenerative disease. It’s a puzzle but I doubt anger helps solve puzzles. Be consoled. There are people who care, people working on just the things you mentioned and more. Care for those who care for others. It’s hard work. I live with my sister who has it, a former law professor who always ate well, exercised and took her vitamins! Needless to say she used her brain a lot, now it is failing her. Sometimes things just go wrong. Life happens.

[@nessieness5433]

Unbelievable, such devotion and abnegation !

[@bestamerica]

' very good patience sweet wonderful wife love to take care of her husband very well

[@amandaallen9460]

My mom's mom has mild approaching moderate Alzheimer's..her mom also had it and passed away in ,2005

[@calamorta]

How's she doing??

[@monalotfy1065]

This is so hard to warch

[@russtaylor2122]

Most people i know, who might watch a piece like this, would say 'Please put me out of my misery if i get close to being like this'. Today is the best day of the rest of Helmut's life. Only our ridiculous fear of death makes us keep the empty shell of a human alive. If this was your old faithful dog, you would have him put down and consider it an act of mercy.

[@freespiritwithnature4384]

Has anyone heard how this family is doing?

[@aileensultzer9069]

I take care of my husband and it’s very lonely and I’ve been diagnose with dementia 3years ago my husband is 93/ and has dementia for 1year I don’t know what I’d do if I didn’t have God

[@2eleven48]

Aileen Sultzer......It is a very thankful thing for you to have God at your side, but you are not being realistic. You cannot go on like this. I urge you to seek help. Find a way to lift the burden from your shoulders. Robert.

[@paulavee3669]

Aileen Sultzer Having faith is wonderful but please accept outside help also.

[@Lucailey]

May God bless and take care of you both Aileen! 93 years old is a great accomplishment for your husband. We have so much to learn from our elders and having lived or 93 years he must have seen and done a lot. You are a wonderful wife Aileen. Please reach out for help when you need it. Don't forget your own health too!

[@N8sMami]

Bless you and respect for your selflessness

[@kimbauman1181]

So sad shes an angel

[@perciliamoore5846]

God bless you I know the feeling.

[@3o3brine28]

I was told by a dementia professional that I shouldn’t show my Mother (who has Alzheimer’s) that I shouldn’t show her old pictures. She was right.... one day I did show my Mom a picture album of about 30 years ago. Her eyes lit up and she said “oh my goodness it’s time to go!”........ they were pictures of a Christmas about 30 years ago. She had recognized the people in the pictures... her in laws and nieces and nephews. She finally stood up and was so angry. She threw the album on the floor and said...”It’s Christmas!! Let’s go right now!!” Dad and I spent the next hour trying to calm her down and get her to relax. I will never do that again!!!

[@sarinaedwards6705]

Wow what a great attitude, taking one day at a time, great example, our life is but a vapour, it could be snatched away at any time

[@afiomai69]

Sorry if I am diagnosed with dementia give me a quick death of my choosing. Why put myself or my family through this misery.

[@kasijj06]

update?

[@sarahdixon1943]

The shaking, seems like a youch of Parkinson's as well. His wife is a angel amongst us.

[@macclift9956]

I often wonder if there isn't a connection between medications for chronic conditions and early-onset Alzheimer's; perhaps sleeping tablets and medications for high blood pressure? A video on longevity claimed that low blood pressure in older people is linked to Alzheimer's.

[@ummadam4663]

It was wrong for the kids to leave the parents in this situation. My father has dimensia and all five of us siblings have to visit regularly and support our parents. This way our dad can get the care, family affection and love and our mother doesn't become overwhelmed. I feel care for the sufferers should be a collective family thing. It is nice that there daughter does visit.

[@LouRadon]

Change doctors immediately if they are uncooperative or incompetent.

[@catherineward175]

would I be that good, I do hope so

[@johannarovere7177]

God bless you

[@jmbw3736]

My doctor wants to have my brain scan to confirmed that I have young onset dementia. I did the memory test. It shows that I am in the early stage. They need the brain scan to confirmed it. I tend to forget things. I go to the kitchen to do something and end up wondering why I came to the kitchen. I loosed keys and other things. All the signs are there. I quest I am doom. I feel horrible that family members will have to end up taking care of me. I do not want to be out of control of my life. I am loss and sad.

[@shirleycooper6618]

Im so sorry you are going through this and pray for you.

[@lesliegraff3136]

JM BW Across the miles sending love and peace ❤️

[@GiGitteru]

Hey you doing okay? This comment was made a year ago

[@sweetrose813]

My mother developed dementia. I had been living with her when God gave me a dream. She started to climb I said mother that's not normal behavior and she fell on top of me. When I woke up the Lord said it's name is dementia

[@scotterman5925]

My Late Aunt Have This And Died From It

[@jacquelinemorris9886]

I wonder is helmot still alive

[@itskristayk..4]

My grandma has dementia and she only has 5 to 7 days

[@justinkahn1575]

This is interesting.

[@lindajones9499]

Why does he touch things...do you think working with clay..like artists do would help? Something to keep his hands busy. Does music help?

[@ingehumphries8039]

Ein richtiger engel die frau ❤️

[@PhilMoskowitz]

If I had to die from a terrible disease, I'd chose Dementia. I know it's tough on families, but they could just put me in the backyard shed. I wouldn't know it or care. Personally I think once we take away people's independence and need to take care of themselves, their condition exponentially worsens. What happens to single people who've lived alone most of their lives? Do they have less instances of developing dementia?

[@tinamarmo2722]

Such a cruel disease.

[@therealestsista]

YIKES!!! He Looks like a Better Version of John McCain LOL!!!

[@BobCrane787]

Terrible, sore attempt at humor. But yes, John McCain was terrible

[@daveywaves5325]

This is what happens when you pump people full of drugs, and they outlive their natural life. My mom has dementia, and it's so hard to see her mind go with time. When she was first diagnosed, she treated it like it was all a joke, and I'll live a long life anyhow. Anyways times are getting rough for her. This woman taking care of her husband is very strong.

[@jackschitt186]

That,s true Love ,what a beautiful women.

[@eduardoroman3832]

Wath tipe of demencia IS?

[@samiajre6852]

03:01 the best thing you can hear from an sincere women , not like many money worshipers those days

[@alukardFE]

Just like a baby, so sad :(

[@kajilai]

Circle of life...

[@happydays1336]

My mother had early onset dementia and died at 60. Her identical twin lived healthily to 90+ years old which is very confusing to me. (They were so identical I couldn't tell which one was my mother when I was a preschooler which was very upsetting.) My mother did tell us that she had whacked her head really hard against a low lying limb when she was a child (or teenager) while riding her bike. I wonder if this damaged her brain somehow. My mother did have water on the brain that was relieved with a shunt but it was too late to help ( at age 59). I was very bitter for years towards my father because I'd shown him a newspaper article about hydrocephalus and shunts years earlier when I was a teenager. I was very excited about it because the article reported on the great results in some dementia patients when the water was removed and a shunt was implanted. He refused to even consider the treatment. What made me so bitter is that she ended up having the very same surgery my father had said was quackery, but by then her brain was destroyed. My sisters and I have all breathed sighs of relief when we reached our 60th birthdays because we all were still normal.

[@happydays1336]

I've never heard of the tapping, patting and stroking behaviors like the man in this clip exhibits. Does anyone know if this is common?

[@janheard3826]

Barbara Lyman Thank you for posting your story. Very interesting that your mum’s twin never got dementia. I have read of identical twins, one is gay and one isn’t and gay people usually say they were born like that so it is hard to understand in the case of identical twins. In your mum’s case maybe the head injury did trigger the dementia in later life, but if it’s not hereditary then maybe there is a chemical imbalance in the brain that causes it or some sort short circuit. I’ve heard of one twin getting cancer and one not. Anyway I don’t blame you for resenting your father for not wanting the shunt surgery. Sad how one person in a relationship gets to dictate how the other person lives etc. The dominant one, and usually the man.

[@rain73ful]

Her children should be helping her.

[@ffm60313]

the children are helping her. she wants them to lead a normal life, too.

[@LouRadon]

Check your loved one's ONLINE medical records. They are more detailed than what your doctors may inform you. If any nutrient deficiencies or blood irregularities are present, address them. My Mom's "doctors" never told us that her white blood cell count was dropping and her immune system was affected. By the time I figured it out that her immune system was compromised, it was too late.

[@LouRadon]

Change doctors immediately if they are not cooperative.

[@Sashazur]

My records also showed several things that my doctor didn’t mention, but none of them (so far) are anything significant.

[@UKS12345]

Strong women

[@catherineoloughlin7451]

it seems to me that these LIVES can exist only with the aid of others......and maybe sometimes it really is like living with t a child....so maybe they have regressed back so far

[@MsHburnett]

Wear incontinence pads or use a catheter. Much easier without additional cleaning

[@jeanettesdaughter]

MsHburnett the catheter can be painful, cause infection and still has to be cleaned. Continence diapers have to be put on and changed, which may be a struggle. There is NO getting around the difficulty of managing the loss of hygiene. A professional day nurse in home is the best option for those who can afford it. Otherwise, that is going to be problematic and each male or female will have to be helped and handled as an individual. No easy answers. For most of us, it’s a day to day challenge. A partner dance, not a solo freestyle.

[@glinda9243]

Wonder if she tried adding coconut oil several times a day which has helped others.

[@nicepush2574]

Coconut oil and bentonite clay................. miracles do exist

[@dolorescritandi3426]

give him baby food

[@jeanhenley7337]

What's the difference between Alzheimer's and dementia

[@yeetlesbeetles1999]

Alzheimer’s is a type of dementia, though it is the most common. Dementia could also include vascular dementia or many other types.

[@papabear2515]

You are correct.

[@geoffreyball1137]

what an amazing women

[@MsHburnett]

A good catholic family