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Wellbeing discussion - checking in with each other and sharing practical advice

Sunshine2*

Registered User
May 16, 2019
51
Hi, I'm a new member as my husband was only diagnosed with Parkinson's dementia in October 2019. He's in the mild stage they say but he's been doing odd things for a couple of years and has been diagnosed with Parkinson's for 9 years. I'm 60 and he's 73. When he was diagnosed I felt fear and despair although it wasn't a shock. I know it's selfish but I was resentful. I could see my 60's being one long round of hospital visits, frustration and care. It's like a one way street. I've lost my best friend. He doesn't have much empathy now so if he does something that upsets me he never says sorry. I know he can't help it. I see my friends booking holiday's, going out for meals, sharing good times. We went away for a few days in September and it was such hard work I vowed not to do it again. We sleep in separate rooms. I don't feel like his wife anymore (after 38 years of marriage). I feel like a carer. Sorry for having such a moan but it's like being on a ride that I didn't want to be on.
Hello Am59, Please continue to post on here, as it has been such a help to me. My husband (in his fifties) has been ill for 30 years with Aplastic Anaemia (wonderful haematologist cured and saved his life). He’s had a brain haemorrhage, has epilepsy, Multiple Sclerosis was diagnosed 23 years ago and he’s had a suspected mini-stroke and MS Dementia for 8 years approx. He has Optic Neuritis and Nystagmus. I care for him day and night, although he does visit a wonderful place for music therapy for 4 hours a week. I shower and dry him and care for his catheters etc. He requires constant care and attention and I have to do everything for him. I have pushed him in his wheelchair for many years, (Zimmer frame indoors). Last year I took him on our first cruise, the staff were wonderful. The scenery and fresh air was lovely. However, I now have Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis affecting my neck and spine, so taking him out now is going to be very limited. He does get very “forgetful” and is constantly asking the same questions over and over again. All I can try and do, as we all do, is to do my very best. It can be lonely, but we have to remain positive. I wish you well.
 

Littlebear

Registered User
Jan 6, 2017
82
Hi, I'm a new member as my husband was only diagnosed with Parkinson's dementia in October 2019. He's in the mild stage they say but he's been doing odd things for a couple of years and has been diagnosed with Parkinson's for 9 years. I'm 60 and he's 73. When he was diagnosed I felt fear and despair although it wasn't a shock. I know it's selfish but I was resentful. I could see my 60's being one long round of hospital visits, frustration and care. It's like a one way street. I've lost my best friend. He doesn't have much empathy now so if he does something that upsets me he never says sorry. I know he can't help it. I see my friends booking holiday's, going out for meals, sharing good times. We went away for a few days in September and it was such hard work I vowed not to do it again. We sleep in separate rooms. I don't feel like his wife anymore (after 38 years of marriage). I feel like a carer. Sorry for having such a moan but it's like being on a ride that I didn't want to be on.
My husband has FTD & is barely able to speak. I relate so much to what you say about watching friends enjoying life whilst we are carers. My husband was diagnosed in 2014 at the age of 64 but hadn't been right for some years before. I'm a year younger. Yes I do feel resentful & am fed up with being the brunt of his anger & endless bad mood. I'm fed up with him lashing out when I'm trying to help (I always ask first!). One of the worst things is I'm finding it harder & harder to remember the loving, kind, gentle, caring, funny & fun loving man I married. I hate this disease. Never in my worst nightmares did I imagine our life being like this. I'm currently having counselling for depression but it's hard to see how it's going to help. The anger & sadness are overwhelming.
 

bdhm

Registered User
Sep 26, 2014
2
Hi everyone, and welcome to our wellbeing discussion!

Whether you have dementia, or you care for a loved one with dementia, wellbeing and mental health are just as important as physical health.

We wanted to check in with all our members and ask the all-important question, how are you?

This discussion is a chance for you share how you feel, ask and answer questions about wellbeing, and share practical advice with other community members. This way you can share your emotions and advice with others who understand and have lived experience to share.
How am I, To tell the truth I’m up & down like a yo-yo, about 9 years ago I spoke to my go about me forgetting things, mostly names. Meeting someone new was a worry as within a few mins I would be going thru the alphabet to guess what it was. After tests with a expert it was decided that I suffer with stress. 5 years later I was back with my go with the same question, after tests again, still suffering with stress. Then suddenly last February my wife died at home, I gave her cpr to revive her but she failed her fight 30 mins later with paramedics doing their best to save her. My house now in process of being sold, because probate rules say I have to pay out a large sum to her siblings. Fair enough, but it means I have to move miles away from the friends I know. To a place where I have a few friends and a family member. I’m sure my memory is getting worse & worry like hell what the future has in store for me. I temporarily drive minibus for a charity and cross paths with many citizens Suffering with dementia. I see all the things that come with dementia. All at different levels, In continence is my biggest worry for my future. It upsets me when I forget an important occasion & someone says to me ( I told you this morning, don’t you remember). That’s the part that makes me so angry with myself. And when I see these people with dementia I wonder if they feel the same anger as I do. Is that why they swear and get violent. ☹
 

Sunshine2*

Registered User
May 16, 2019
51
My husband has FTD & is barely able to speak. I relate so much to what you say about watching friends enjoying life whilst we are carers. My husband was diagnosed in 2014 at the age of 64 but hadn't been right for some years before. I'm a year younger. Yes I do feel resentful & am fed up with being the brunt of his anger & endless bad mood. I'm fed up with him lashing out when I'm trying to help (I always ask first!). One of the worst things is I'm finding it harder & harder to remember the loving, kind, gentle, caring, funny & fun loving man I married. I hate this disease. Never in my worst nightmares did I imagine our life being like this. I'm currently having counselling for depression but it's hard to see how it's going to help. The anger & sadness are overwhelming.
Hello, I thoroughly understand what you are going through and I wish you well. My husband has very little patience now and gets very angry and shouts at me, even though I’m in pain and helping him constantly. He was never a husband that helped me, prior to being ill himself. I know for a fact he would never have cared for me, the way I continually care for him. Only people caring for a person with dementia really understand how hard it all is and my husband is disabled too. When he has one of his angry moods, I quietly go out of the room and return when I think he has calmed down. It shouldn’t be like this though...
 

Mustang66

Registered User
Nov 27, 2019
49
Do you know no one has ever asked how I am doing, so thank you Sophie, this is the problem, we feel so isolated, its like being in a bubble cut off from the real world, constantly grieving from the time of husbands diagnosis four years ago, I was 58 he was 60 although signs were there much earlier, you grieve for your old life, and accepting this new one is tough, solely we make every decision & take on the responsibility of everything, acceptance is the hardest thing, everyday I am learning on the job, its life, but not one that you ever imagined!
 
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Rencat

Registered User
Nov 15, 2018
12
Dear @Rencat please find yourself a carer to help - use the Attendance Allowance to pay for some care. Have you had a Carers Assessment - you really do need help. The GP might refer you to Cognitive Therapy - it really helps to have someone to talk to - I found our GP to be a waste of time regarding my partner and the Alzheimer's but they were concerned for me when I was depressed. Have you phoned the Alzheimer's Society helpline for some advice. Also there may be voluntary groups who could come and pick you up to take you to the GP or wherever you need to go. Can you get a week's respite care - it sounds like you desperately need it. Your wife seems to be at a similar stage to my partner - though I'm guessing your wife younger - it's 4 years since his diagnosis, it's a struggle but I'm luckier than most. Your wife has the illness but it doesn't need to be your illness as well. I am very worried for you. When I was very low and not coping my cousin got me to phone the Alzheimer's Society helpline and it was a really good start in pointing me in the right direction for support, they are very understanding.
Hi, I’ve been on the waiting list for counselling now for eleven months, all thanks to the cutbacks and I’ve already asked for a carers assessment, at the moment she’s down as my carer so that will need to change. I’m seeing my social worker this afternoon so will bring everything up then. I just can’t believe that they only gave me 15 hours a week for her, and one of those days she likes to go visit her 94 year old mum who lives in Doncaster so that takes up seven hours, I only just recently got a new social worker who was from a caring environment and she’s battled to get those hours increased.
One thing now is she’s started to soil herself and just not understanding where it’s come from even stating that someone’s put it there. I’m worried that because of the stroke I’ve had, I’ve only got the use of one arm so there’s no way I’ll be able to change a pad so that’s worrying me also, do you think that they’ll say she has to go into a home earlier because of it? Oh I just don’t know. I’m in a wheelchair having had to have my leg amputated in 2009 it was exactly a year later I had my stroke, both were avoidable and both I sued the hospital trust over. They admitted 38 counts of negligence the day before the court case @nd I was awarded considerable damages to make sure I’m cared for the rest of my life. That’s what makes the whole situation so heartbreaking she’s getting carers allowance for me when it’s I that should be getting it for her. I’ll also speak to my social worker today regarding respite care for me but I’ll have to take my carer along as there’s things physically that I just cannot do.
.
 

One Moment At A Time

Registered User
Jan 4, 2019
43
Puerto Rico
Warm respectful greetings to you, I'm ... 59 yrs., old, male & been Dx with early stages of AD, I'm medicated, I'm a cancer survivor & friends of "Dr. Bob & Bill W." ---> ex problem drinker, at age 33 "Master" Alcohol had be shackled inside a bottle & for many yrs., I was in denial.

My journey with memory issues (when I'm under the stress factor) at times is not "very good looking", at times I feel depress, anxious & with mood swings.

What helps me is having an attitude of thanks giving to a Higher Power of my understanding, for His presence by my side 24/7, my dear wife, one daughter, one son, two "treasures" my grandsons 9 & 10, friends, "chispi---> chihuahua", AD & AA surport fellowship meetings (they're truely a blessing) & my Healthcare Professionals.

Is not easy but it could be worse,easy does it / baby steps / enjoying today & now.

This afternoon I went to the movies & had dinner with my dear wife, it was awesome, I sincerely thankful to Him.

Always buckle up, be safe & wishing you inner peace & blessings.
 

Anon33

Registered User
Jul 28, 2019
25
We are all struggling. Caring is a tough lonely job. It’s about keeping your head above water in whatever way possible.
 

Grahamstown

Registered User
Jan 12, 2018
1,636
East of England
I have always been a mentally strong person but the roller coaster of grief and counterintuitive behaviour of a person with Alzheimer’s disease is putting the screws on my mental health. I have been lucky enough to be able to arrange respite care for my husband with the disease, and I do count myself as lucky, but that brings its own grief. It does restore my equilibrium enough to endure it when the first thing he says when I go to see him is ‘ I want to go home now’. I have to be so tough to go through this mental torture but I am making it through somehow.
 

DebJW

New member
Jan 24, 2020
3
My father was diagnosed formally last year but has been having symptoms for several years. I only just joined this forum, mostly because a thread about them hiding random things hit close to home (and was also pretty funny - everyone is quite hardy!). So far the best advice I have for anyone going down the same path is (1) get power of attorney sorted with a solicitor IMMEDIATELY to keep you in control further down the line when your loved one loses capacity and (b) pick your battles - if they’re unlocking doors or wandering, or doing unsafe things, then that needs dealing with, but if they refuse to get into their pyjamas and sleep in their clothes sometimes - who cares, as long as the next day they are showered and changed. You can’t fight on all fronts. Choose only the important ones so it doesn’t grind you into the ground.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Hi, this sounds exactly how I was with my lovely mum. I lost her 30th December just gone. We wrote things down, but still we had to go over everything countless times and yes I would snap at her, then feel guilty tell her I loved her and I was sorry for snapping. She would say I had nothing to be sorry for and had done nothing wrong. I’m crying now as I’d give anything to cuddle her.
I’m in the same sad place as you.
((((((Hugs)))))))
 

TAP

Registered User
Jul 23, 2015
7
Dad now 78, diagnosed back in 2015 with Mixed A with VD. Dad still in the family home. Mum look after Dad and I am there when I'm not in work. Luckily I live 15 mins walk away (or a few minutes in the car!). I'm up at 5am there for around 6am, help with the morning wash breakfast, then on to working for 8 odd hours and then back in the evenings. Weekends there full time! I do it because I love my dad but am finding it a struggle (I'm 49) now but do not want to see him go into a care home/respite (nor does mum) as we know he will ;go down hill' fast without having the one to one care. Dad has been at the late/severe stage for some time. All the medical time that come in say Dad is well looked after. Actually Dad's GP did a home visit on Wednesday for a health check due to a worrying episode we have two sundays ago. The GP said that if it wasn't for our care Dad would have "gone" a long time ago. Mum is finding it a struggle though as well, more mentally and she has finally thought about calling CrossRoads (I think that it the charity) so someone can come in and sit and talk with her for some time during the days as Dad has not be able to communicate for a long time now, cannot walk, cannot feed himself, we spoon feed him drinks which needs to have Resource added. Basically we have to do everything for day. We have a DNRCPR in place and the palliative care (local hospice) team are now on board (although it seems we are not just yet at that stage). Oh yes, all in the same year in 2015, diagnosed with Parkinsons and Bladder cancer as well. And now conjunctivitis in both eyes !?!

It is a struggle as the daughter who wants the best for dad and the best care but finding it hard with full time work as well and every time we have a new medical issue to deal with but glad the local hospice is on board who does check on us (me and mum) from time to time to see how WE are doing.

Keep strong everyone. xxx
 

Zythum

New member
Dec 29, 2019
2
Hi, I'm new here and I think this is a great idea. I am looking after my Mum who has Alzheimer's. She lives next door to me. I get absolutely no help from anyone. I'm a single mum with a part time job and I'm struggling. I feel very trapped and bleak. Mum has been getting steadily worse. Three times this week she has been furious with me over nothing. It's difficult enough without having to deal with that. She refuses to accept that there is anything wrong with her. She won't accept any help. I just need someone to talk to. My friends are great but they must be fed up listening to my problems. I'm normally a happy positive person and I don't want to feel like this.
 

Demi Jones

Registered User
Jun 14, 2019
15
My mum is now in a care home after 5 years of looking after her i could not cope any longer as she started wondering outside during the night and got aggressive when we tried to get her in,problem now is when i go to see her she can be perfectly nice one day then the next time i go she is horrible and i really mean horrible is this normal.she keeps telling me she wants to go home and there is nothing wrong with her i am scared to take her out as she goes mad when she goes back to the home,i don't no what to do for the best i am on tender hooks all the time and feel like life is passing me by as i feel guilty if i am planning a trip or go for a walk in the country or even go shopping,does anyone else feel like this.
 

Am59

Registered User
Jan 18, 2020
22
Hello Am59, Please continue to post on here, as it has been such a help to me. My husband (in his fifties) has been ill for 30 years with Aplastic Anaemia (wonderful haematologist cured and saved his life). He’s had a brain haemorrhage, has epilepsy, Multiple Sclerosis was diagnosed 23 years ago and he’s had a suspected mini-stroke and MS Dementia for 8 years approx. He has Optic Neuritis and Nystagmus. I care for him day and night, although he does visit a wonderful place for music therapy for 4 hours a week. I shower and dry him and care for his catheters etc. He requires constant care and attention and I have to do everything for him. I have pushed him in his wheelchair for many years, (Zimmer frame indoors). Last year I took him on our first cruise, the staff were wonderful. The scenery and fresh air was lovely. However, I now have Osteoarthritis, Carpal Tunnel Syndrome and Cervical Spondylosis affecting my neck and spine, so taking him out now is going to be very limited. He does get very “forgetful” and is constantly asking the same questions over and over again. All I can try and do, as we all do, is to do my very best. It can be lonely, but we have to remain positive. I wish you well.
Hi, Thank you for your kind reply. I am sorry that you are suffering yourself from these painful conditions. You sound like a wonderful carer and are obviously very patient. I wish you the very best.
 

nae sporran

Volunteer Host
Oct 29, 2014
6,571
Bristol
Hi, I'm new here and I think this is a great idea. I am looking after my Mum who has Alzheimer's. She lives next door to me. I get absolutely no help from anyone. I'm a single mum with a part time job and I'm struggling. I feel very trapped and bleak. Mum has been getting steadily worse. Three times this week she has been furious with me over nothing. It's difficult enough without having to deal with that. She refuses to accept that there is anything wrong with her. She won't accept any help. I just need someone to talk to. My friends are great but they must be fed up listening to my problems. I'm normally a happy positive person and I don't want to feel like this.
Hullo and welcome to the forum @Zythum. Sadly, denial is common with dementia, but your refusing to accept any help does make life so much harder. You will find advice and a place to off load your problems here where we know how you feel. Please keep reading and posting, or start your own thread when you are ready.
 

Bunpoots

Volunteer Host
Apr 1, 2016
4,078
Nottinghamshire
Welcome from me too @Zythum

I too looked after my parent (dad) single handed. I thought I could do it all but eventually realised I couldn’t. My siblings just expected me to get on with it and they helped out when it suited them which was hardly ever.

You can’t do this alone. I’d say, from experience, that it takes at least 3 people to look after one with dementia without going nuts. Not many of us have that luxury! So call SS and see what they have to offer. Your mum might not want help but this is about you too. I had to use subterfuge and lies to get carers into dad’s. Without them I would’ve gone under. It makes all the difference even having a little bit of help.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Hi, I'm new here and I think this is a great idea. I am looking after my Mum who has Alzheimer's. She lives next door to me. I get absolutely no help from anyone. I'm a single mum with a part time job and I'm struggling. I feel very trapped and bleak. Mum has been getting steadily worse. Three times this week she has been furious with me over nothing. It's difficult enough without having to deal with that. She refuses to accept that there is anything wrong with her. She won't accept any help. I just need someone to talk to. My friends are great but they must be fed up listening to my problems. I'm normally a happy positive person and I don't want to feel like this.
You are not alone here, & share away
My mum to denied for years that anything was wrong. please don’t forget that your child is a priority & yourself.
try & step back a little for your own sanity if possible
X
 

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