Newbie at caring for my wife

[technotronic]

Hello my name is John and am new to this site. May I wish you all a Merry Christmas n hope it was a good one.
I look after my wife who has had Onset Dementia for the last three years, slowly over that time her awareness, memory n confidence has deteriorated drastically to the point where I've had to give up full time work this summer to look after her, as she didn't want to be left alone all day as it frightened n upset her.
We have three cats now, did have four till one died of breathing problems in October, one of the three also has enlarged heart n chambers, is diabetic so has insulin injection twice a day, a heart condition plus has Acromegaly causing a tumour in his head both conditions he takes tablets for daily.
Responsibility for all of them plus medications as well as caring full time now for my wife.
Her moods can change from one minute to the next the same with her memory; she is so easily upset, n constantly asks me not to leave her n go off with some one else, which I assure her that I won't.
She constantly asks who I am to her, if we're married or not, some times minutes apart she repeatedly asks thing n at times is continuously talking all the time.
I do everything now at home, washing, cooking, cleaning, washing n drying up plus taking care of n get her anything she needs, drinks, food etc.
She also suffer carpal tunnel syndrome on both her wrists, from over 30 years of typing, which doesn't help at times.
I am a novice at this but hope that over time I will become much better at taking care of her, n getting used to new things that occur with her condition.
Guess I'm gonna be on here lots looking for help from the more experienced of you that have been through a lot of it already.
John

 

[Grannie G]

Hello John

You`ve got your work cut out and you are in good company.

I hope you find the forum helpful and identification with carers past and present will help ease the feeling of isolation experienced by most of us in our caring role.

The mood swings are really upsetting to deal with. With my husband, it was like a light switch, one minute all was well and the next if I breathed in, I felt I should have berated out. It is almost impossible to find the trigger which causes them.

Welcome to the Forum.

 

[truth24]

Welcome technotronic. Sorry to hear of your problems. I am sure you will get as much advice, support and comfort here as I do, and from those who are experiencing the same as you. Wishing you peace and strength.

Sent from my GT-N5110

 

[technotronic]

Continuing.....
It gets hard at times to go out n get some shopping in, as she doesn't want to go out very much or to far.
I only got half of this years Christmas cards in the post on a previous trip out, other half people will get after Christmas next time we get out to shop ( hopefully before New Year!)
She couldn't remember who any of the people were that sent cards to us this year, plus her memory of where we live n where she has put things is really bad now.
She can't remember any of our cats names n which cat is which!

 

[technotronic]

Thank you GrannyG & truth24 for both your replies, coming on here now I don't feel so isolated like I had felt before.
Am finding that there is so much to learn n to be aware of to help in caring for my wife the best way that I can, n will no doubt find lots of useful hints tips n experiences from others on here.
Have only realised recently about the loneliness that goes with it as well as the isolation, started to feel sorry for myself at one time, n quickly scolded myself for doing so!!
I have to stop myself thinking how I used to when things were 'normal', in any upsets that happen, reaction to them must be totally different with no full awareness on her part, so she won't see things the same.
My wife has no living family left, so she relies totally on me, n I only have a brother n a sister as both my parents are dead as well. My sister has her hands full as her partner suffers from Parkinson's disease, so she can't help out like she hoped to, with her hands being full most of the time.

 

[Grannie G]

I used to do most of my shopping online when the time came when it was too much for my husband and he couldn`t be left.

Then I had a carer , so could nip out for small items. Do you have any help John?

 

[Grace L]

Hello John and welcome to TP,
I'm Grace (a VaD widow), but I care for my MiL who has Alz. She lives independently, but needs a lot of support.

I struggled with shopping with my husband too, and at this stage I just gave in an decided to have most of our shopping delivered. That way I/we could target shop for the essentials like meat and veg.
Shopping trips became more enjoyable if I included cake and coffee...

I did arrange for a carer (Age Concern) to take my husband out on shopping trips so he would not feel 'left out'. I've never liked shopping, but my husband did, and the Age Concern carer was good with him.

Have you asked for a Carers Assessment?

 

[Beate]

Two things to consider: you can't do it all yourself and you mustn't isolate yourself! There is lots of help out there if you want it. First, if you haven't had a needs assessment for your wife and a carers assessment for yourself, contact social services and get them. This will determine what resources you could tap into, for example day care, sitting service, lunch clubs, carers coming in, telecare (gadgets like trackers or memo reminders) etc. An occupational therapist should assess your home and see where they could help, for example with a bath seat. Get in touch with your local Alzheimer's Society, Age UK and Carers Centre. I just attended a 5 week dementia course with the AS which was quite useful. They run coffee clubs and get-togethers like Singing for the Brain, which is good fun. They can also help with filling in forms. You ought to apply for Attendance Allowance for your wife, and seeing as you have given up work, Carers Allowance for yourself. You can also get council tax exemption for your wife, which will work out as 25% reduction on the whole bill. Also, please start the power of attorney process while your wife can still give her consent.

Sorry if this is a lot of info at once, just do one thing at a time.

 

[pamann]

Hello technotronic welcome to TP you will get so much advice from this forum l could not manage without it have been here for 2yrs my hubby sounds the same as your wife it is so difficult to deal with everyday problems, after 50yrs married life is no longer normal my hubby has had Alzheimers for 7yrs, he doesn't know who l am, but he knows everyone else, we have a cat lucy a british blue he thinks she is a dog as we have had many dogs, only 3 cats, l feel for you, there are so many of us suffering with this horrible disease, it ruins so many lives, take care, when things get too bad you must think of yourself and get some help, take care ♡♡♡

 

[Jinx]

Techtronis welcome to TP. I can't add anything to the advice Beate has given, everything covered but would urge you to take all the advice given. You need to take care of yourself mentally and physically so that you can care for your wife but it doesn't have to be you 24/7 you need to have regular breaks even a couple of hours once a week to look forward to but more if she will tolerate it. Good luck.


Sent from my iPad using Talking Point

 

[Chuggalug]

Welcome, John. I love your TP name. Makes me wonder if you also love music?

So, you've found out how things are, and what you are now faced with. I've probably seen much of the same things as you've mentioned in my five year journey, now, into my sixth, with caring for my husband who has undiagnosed dementia.

I was thrilled to find this site a few months ago. So many of us come here to prop each other up and give advice. I hope you find Talking Point as helpful as the rest of us do.

Strength for the journey, John, and good to meet you here.

 

[Redpoppy]

Hello John.I'm so glad you found us. I find TP so comforting when feeling tired and frustrated.Just to 'speak'with people who have had experience of what we as carers are going through is therapeutic. You will find there is always someone out there reading and ready to reply to your posts. You really have a lot going on, having to also care for your cats. Make sure you take care of yourself too.

 

[LYN T]

Welcome to TP John

I see you have been given lots of good advice already; that really is typical of this Forum Like the others I would urge you to get as much help as possible and don't try to 'go it alone'. Don't worry about things you can't control like Xmas cards etc. people will understand-if they don't, well quite frankly tough

You must however look after yourself. My Husband got to the stage where he also was terrified about being left on his own; I managed to get him to go to daycare and it was like a little lifeline for me. The staff were wonderful and it allowed me to do the things that I needed to do. Your wife would be well looked after -even a few hours would help.

Just to say thank you for posting on my thread announcing my Husband's passing-it was very kind of you.

Take care

Lyn T XX

 

[Grey Lad]

Welcome to T P John I am sorry to here what a demanding situation your are in. You have come to the right place, as you will always find someone on T P who has had a similar experience or knows where to find an answer to the questions you raise. I have only been a member for a short period of time but I would not have coped without the help of fellow posters on T P.

 

[dotty2]

Dotty2

Welcome to T P John I am sorry to here what a demanding situation your are in. You have come to the right place, as you will always find someone on T P who has had a similar experience or knows where to find an answer to the questions you raise. I have only been a member for a short period of time but I would not have coped without the help of fellow posters on T P.

Hallo Grey Lad, I sympathise with your situation regarding the lack of sleep. Tiredness makes everything harder to deal with. My husband David is getting up a lot in the night to go to the loo. If I don't help him he often misses the loo, he has a bottle and a plastic container but doesn't like using either. So I am in and out of bed and just as I am nodding off he is up again. David goes to sleep as soon as his head hits the pillow but not me. Luckily I am ok if I get 5-6 hours sleep but lately it has been less and then I get really cranky with him, then feel guilty , can't relax and have lots of sleepless nights.

David has Parkinson's Dementia and remains gentle and kind natured but I feel like the wicked witch at times when I am really tired.
However we have a lot to be thankful for. He is quite mobile, enjoys a walk, have a large extended and loving family and great friends which sounds like you have too.
It is the night times I find really difficult.
I am going to try to sleep now and hope you are doing the same and that Maureen is ok.

 

[ShellW]

Hiya Dotty2
I had a similar problem with my husband up 3-6 times a night for weeks , but the docs looked at his meds , tweaked them a little,and checked for infection and this has been reduced to a once nightly disturbance and sometimes we manage a whole night through ,. Makes a big difference to your tolerance levels , so might be worth mentioning it to your GP or asking for referral to the incontinence nurse attached to your GP surgery when you have the energy to organise it. Loved and thoughts with you xx

 

[ShellW]

Hiya technotronic Tp is really great, particularly for the night time heebie jeebies when day to day problems seem to loom really large, soooo reassuring to find others with a realistic take on life in the weird world of dementia, and the really great thing is you can use it exactly how and when you need to, great resource xx ��

 

[technotronic]

Hello to all that have replied n for all the helpful advice that you have all given me, a lot to look into n to think about.
I have started to notify those that I can that are not aware of my wife's condition that have an email address, but a lot of others I will have to over time, letter them know by letter.
I had a reply to an email today I sent to one of her God-daughters letting her know about my wife's condition, seems that she had an inkling about it, my wife had mentioned something about it when we last went to see them, n telling them that I helped her out if she has to struggle to say what she wants to but can't; the above is what she wrote in her reply to me, she has offered to help in any way that she can, which would be helpful to us both. She started berating herself for not getting in touch again sooner n wanted to know if she could visit soon, if it didn't upset my wife too much, know that it wouldn't as she thinks the world of her god-daughter.
Nobody could know how quickly she could get worse, I appreciate that she has a busy life n also a family, so it's not easy for her to find the time, all of the above I put in my reply back to her.
I have read the advice about not trying to do it all myself, but in our family we've always tried to sort things ourselves if we possibly can, but will keep in mind the option of other help that's available.
I did read something online that Onset Dementia or any Dementia can be a fatal condition, that namely to do with a problem with swallowing in later stages, have you all had this problem during the care of your loved ones?

 

[LYN T]

Hi Technotronic

Some of the best advice I was given on here was not to look too far ahead. Yes swallowing problems can occur but the Speech and Language people can help with that. Many people with Dementia pass because of other causes-just the same as people without Dementia. Some people just fade-again the same as anyone else.

Can I ask if something is bothering/frightening you?

Take care

Lyn T XX

 

[Trisha4]

I try not to look too far ahead with my husband's condition (Alzheimer's) as it's enough to deal with current issues without worrying about what might happen. Of course that's difficult at times. At the moment we manage without help but I am beginning to explore where we might get good quality support when we need it. I guess being proactive makes me feel a little in control.


Sent from my iPhone using Talking Point mobile app