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Limiting my communication with my friends.

None the Wiser

Registered User
Feb 3, 2020
72
There is so much in this thread that I can relate to. My husband is exactly the same with regard to phone calls or meeting people, and can get really quite angry and verbally aggressive. As the disease takes its course and more and more care is needed I find I am not only loosing my husband, but also seem to be loosing myself.
I also wish there was some understanding that dementia doesn’t only affect the very elderly. My husband is 68 today and has had symptoms for at least 8 years. It has had a huge impact on our retirement plans and role as grandparents, as well as our finances and subsequently mental health. Being a carer for someone with dementia is a huge commitment and responsibility. I had no idea before I found myself in this place. It’s so difficult to shift understanding as unless you’ve lived with it how can you possibly know. It is a bit like having a newborn baby, not realising the toll that sleepless nights take, along with rarely being able to leave them, and the overwhelming sense of responsibility that hits you as a new parent. But parenthood comes with all the joy, fun and excitement of watching the miracle of someone developing and changing as they explore the world. Watching someone you have spent your life with unravel before you is quite a different experience.
 

Scraggy mag

Registered User
Oct 30, 2018
29
I totally agree my husband is 70 and just the same . Some days are better than others but the comparison of being like a child without the joy is so true. But what can we do but carry on and care for them .I sometimes cant remember when things were good . The kids think he is fine he seems to put an act on when they come ,they think I exaggerate how he is getting worse so frustrating they would get a shock if they looked after him for 24 hours
 

Looseleaf

New member
Mar 22, 2020
9
There is so much in this thread that I can relate to. My husband is exactly the same with regard to phone calls or meeting people, and can get really quite angry and verbally aggressive. As the disease takes its course and more and more care is needed I find I am not only loosing my husband, but also seem to be loosing myself.
I also wish there was some understanding that dementia doesn’t only affect the very elderly. My husband is 68 today and has had symptoms for at least 8 years. It has had a huge impact on our retirement plans and role as grandparents, as well as our finances and subsequently mental health. Being a carer for someone with dementia is a huge commitment and responsibility. I had no idea before I found myself in this place. It’s so difficult to shift understanding as unless you’ve lived with it how can you possibly know. It is a bit like having a newborn baby, not realising the toll that sleepless nights take, along with rarely being able to leave them, and the overwhelming sense of responsibility that hits you as a new parent. But parenthood comes with all the joy, fun and excitement of watching the miracle of someone developing and changing as they explore the world. Watching someone you have spent your life with unravel before you is quite a different experience.
This is a very good summary of just how I feel! It is reassuring to know that it is the illness that is causing these issues and not down to my approach as a carer. However it is sad to know that so many others are going through the same journey.
I also often link caring for my husband to that of caring for a child but it comes with the stab to the heart when a skill is lost or a piece of memory is missing instead of the flushes of pride gained when bringing up a child! Also different from child development are the sudden changes to his character that happen without warning. These give the constant feeling of walking on egg-shells and trying to avoid upsetting the apple cart. There seem to be three sides to him: firstly he is being the person that you know and love, then a very confused person that needs help and support (easily and patiently given). but lastly the one to try to avoid of being angry and verbally aggressive.
 

None the Wiser

Registered User
Feb 3, 2020
72
Hello @Looseleaf, welcome. I’m fairly new here but have gained so much from dipping in and learning from others. There are some very wise people on this site. It’s sad but such a relief to find others are going through very similar experiences and feeling the same emotional rollercoaster. You’re right, one of the things I find so exhausting is the ‘walking on eggshells’. From one day to the next, and sometimes from one minute to the next you’re not sure what you’re dealing with. When things are settled and calm instead of sensibly enjoying it I find myself waiting for the change! Life seems to have become so serious too. I wish I could find more moments of joy and fun. Funny things happen, and enjoyment can be found, but it all seems to weigh heavily for me when I’m with my husband.
 

White Rose

Registered User
Nov 4, 2018
674
It is a bit like having a newborn baby, not realising the toll that sleepless nights take, along with rarely being able to leave them, and the overwhelming sense of responsibility that hits you as a new parent. But parenthood comes with all the joy, fun and excitement of watching the miracle of someone developing and changing as they explore the world. Watching someone you have spent your life with unravel before you is quite a different experience.
Very well put, I've often thought the same - of course a newborn baby will usually have two parents taking a share of the work and responsibility - we are on our own with a very large child!
 

Littlebear

Registered User
Jan 6, 2017
95
Reading this thread is like reading about my current life. Sadly I seem to have used up all my reserves & I’m finding it increasingly hard to react appropriately. I’m just so on edge all the time. Pre-lockdown I was having counselling to try to cope better & since I’ve been offered anti-depressants but I don’t want to go down that route. Increasingly my husband is becoming more violent (he has FTD) & I’m honestly not sure how much longer I can go on caring for him and yet I can’t bare the thought of him going into care. It’s so hard.
 

canary

Registered User
Feb 25, 2014
12,871
South coast
@Littlebear - you have to look after yourself, and that includes keeping yourself safe. If anything happens to you then it will also affect your husband. If you end up in hospital because he is violent towards you he will have to move to a care home anyway. Make sure that you always have a charged mobile on you, get a room with a lock on it that you can retreat to when necessary and do not hesitate to call the police if he is becoming violent. The police are trained in this sort of thing and have the authority to call medical staff.
 

maryjoan

Registered User
Mar 25, 2017
1,420
South of the Border
My husband always causes problems e. g. wandering off or getting cross with me for no reason when I have talked on the phone to friends. It was the same when I tried to join in Zoom groups which I have now abandoned. It is very limiting and means I never can enjoy phonecalls.
Oh yes, I know that feeling too. I am lucky enough to have two really good life long friends each calling around every few days when he is watching TV after lunch.
We can socially distance in the garden and it keeps me (almost) sane!
 

Littlebear

Registered User
Jan 6, 2017
95
@Littlebear - you have to look after yourself, and that includes keeping yourself safe. If anything happens to you then it will also affect your husband. If you end up in hospital because he is violent towards you he will have to move to a care home anyway. Make sure that you always have a charged mobile on you, get a room with a lock on it that you can retreat to when necessary and do not hesitate to call the police if he is becoming violent. The police are trained in this sort of thing and have the authority to call medical staff.
It’s not the first time I’ve been told this & I am careful & well prepared. At the first sign of anger - he usually starts thumping the table or chair - I now give him valium & that seems to work quite quickly. & take the edge off things.

My dilemma is the care one. I hate the thought of him going into care. What little speech he has left is unintelligible. I can’t even understand whether he is saying yes or no but because I know him so well I can often work out what he wants. I think the frustration of not being able to communicate is one trigger for his behaviour. Living in care is going to make this worse as the carer’s won’t have the history of knowing him. However I know that I’m exhausted & my physical & mental health are suffering and I can’t go on like this.

I think for me it’s the emotional wrench of the care dilemma that is the hardest . Maybe less so for my husband who lost all sense of empathy several years before he was diagnosed (2014). Now I think I’m just the person he needs to look after him & provide his security. Maybe a care home would provide better for his needs & keep him better occupied - there’s only one of me! There is also the cost of care although his MH practitioner says he should get CHC funding but who knows? He’s also advised us he would have to go into a MH unit due to his behaviour & I have no experience of what they are like

Sorry I’m just doing a brain dump here but these thoughts just swirl around constantly in my head.
 

White Rose

Registered User
Nov 4, 2018
674
Sorry I’m just doing a brain dump here but these thoughts just swirl around constantly in my head.
The TP site is good for that! I'll be having the same dilemma in the next few months. There are definite advantages to the care home, there are organised activities, other people around for companionship, trained staff. It makes sense but it does seem to final doesn't it. I'm hoping that when restrictions lift if my partner is in a home I'll be able to take him out from time to time and visit regularly.