Lived Experience Forum

[Nearly80]

Been married 56 years.  Now my wife has parkinsons with increasing dementure.  Short term and some long term memory loss is now serious.  When confused she'll wander about looking for something she can recognise, or stumble upon something she thinks she wants.  Her anxiety levels have grown, and she has become clinging of me. She does no house work any more. Top put her into level three care would extinguish her light  Both our grown kids are superbly supportive, however they  have both made themselves a place in their careers.

Now I have my own health problems. Atrial fibrelations, aeortic stenosis, angina, kidney - lost 7 of my filters, peripheral neuropathy.  Is there some one out there who has similar problems?  May be we can talk to help each other?  I do need some one to contact.  Nearly80

[HopefullyPink]

Hi @Nearly80 What a huge load you have to carry. And now watching your sweetheart changing and deteriating before your eyes must be heartbreaking.

Many years ago I worked in aged care, and got to see first hand the struggles that can creep up upon a couple and slowly pull the rug from under them. All the emotions that also go along with it, especially the guilt. 

A friend of mine who had been caring for her ailing husband was reluctant to let him go into care, but that decision was taken out of her hands by her doctor who said, she herself was too unwell to take the best care of him. He wasn't thrilled at first, but has settled in and receives the best of care. My friend goes in and spends all day with her husband then goes home at night. It is a period of adjusting. You will know what to do when the time is right. In the meantime is there any support systems, councillors you can access?  Maybe your GP could suggest some support groups for you. Will keep you both in my prayers.

[utopia]

@Nearly80. Just like @HopefullyPink, I too used to work in aged care. 2 couples in particular I remember. Both couples had one member with dementia, while the other party was starting to deal with physical illness. Both of these couples chose to go into supported care together with their partner.
Would this be something that may be suitablefor you and your wife?
I'd also recommend speaking to your family doctor regarding options for you both & support groups that would be good for you.
I hope that others on this site may have some life experience where they can offer you helpful advice.

[Nearly80]

Thank you Hopefully pimk for yout commrnts..  You are quite rtight  abuout other options, incluging level three care.  However we are not yet ready to down size so enormously

[Former-Member]

Hi @Nearly80,
Let me congratulate you both for getting this far together. And you for the love, compassion you clearly have for your wife. You sound so much like my parents. Dad has the kidney problems and neuropathy (he hasn't been able to feel anything below his knees for more than 10yrs). He has bad back problems & needs constant inhome physio to stay mobile. He has dementia starting now which mum finds very difficult. And affects relations. The memory loss & is most frustrating. He needs continence aids etc. Mum has a serious Mood Disorder and slow growing terminal cancer, she's hopeless at housework but manages to cook every day. They need help but mum won't let anyone in the home, won't pay & thinks they're spies or thieves. I live interstate but they do have my 3 brothers close by that do a bit.

Recently they had Aged Care Assessment Team (ACAT) come & recommend home alterations for safety & funding for a home Care. They did the alterations but not strangers in the home. My parents have decided to age in their own home. They've gone past the point of moving plus it's better with memory loss if they stay in familiar surroundings.

I'm guessing you still live in your own home. This is great if access & safety is good. The country simply doesn't have the resources for everyone to go into care now, so the Gov is putting a lot of funding into COMMUNITY CARE, so you can 'age in place' in your own home. There's plenty of Government Funded Packages granted to various community organisations such as Anglicare, BlueCare, Uniting Care, RSL Care, Lutheran Community Care etc If you don't already have in home help, you can enquire at these places or ask your Dr for a ACAT referral to get the ball rolling to support you and take then pressure off a little. There's new packages rolling out lately: "CLIENT DIRECTED CARE PACKAGES" CDC where the client decides what help they want & the government funds $10hr toward paying a community support worker to help. This is my last job, I do anything from light gardening, to transport, shopping, washing, cooking etc.

Talk with your wife and your Dr and maybe a social worker. You don't have to go it alone

Ageing is not for the faint hearted.- be kind to yourself?

[SadShark]

Amazing that you have been able to come online and discuss these issue. Such a huge thing to do.
I know its something my grandparents (only one still with us) but would have ever admitted or considered.

I commend you on trying to get help for both yourself and your precious wife.

I wish you all the best and everyone on here has been hugely supportive of me.

[Nearly80]

Thank you for your response. Yes  we have visited close to ten retirement/aged care villages and looked at them in detail.  Here we are on level two care which gives us a lot of in-house support.  If we moved into "care" we would still need the same home care, but we would only have about 1/6 the living area.  Nearly80

[Nearly80]

Thank you for your reply.  Yes we have thoroughly explored most of the many service providers and met with some very caring people.  The rapidly advancing dementia my wife has increasingly restricts my options.  Her memory loss alone would argue against considering any move out of our home.

I relate to your Dad's sensory loss in his legs.  My peripheral neuropathy has now advanced a lot.  I am now incontinent, tasting food is diminished.  Eye sight does not focus too well.  Each eye has a different focal length and I see double a lot.

I have made a thorough study of most service providers.  They are all experiencing bad administration issues, they do not properly understand what the new government changes are and can not produce a regular roster.   Nearly80

[Nearly80]

Thank you for your reply. Nearly80