Newbie needs advice on stage six please!

[sez]

Hi,

I'm in need of lots of first hand advice please!

My father in-law was assessed yesterday as now being at stage 6. Where do we go from here?

Quick history!
He was diagnosed 2 years ago & although now 85 is generally pretty healthy & active, lots of gardening etc & he was driving until 4 months ago when an eye infection caused semi blindness in one eye.

Within the last two weeks we have watched him go from withdrawn & depressed about his condition to happy & bubbly but totally oblivious he was making very little sense. Frankly, we were so relieved to see him upbeat again & unaware of his symptoms that we naively believed we would find this stage easier to cope with, for him & us. Boy were we wrong, with it came fierce violent outbursts directed at his eldest son whom he hadn't seen in 5 months, to the point that we had police & paramedics present as he was shouting obscenities at people in the street & wandering down the road, totally inconsolable. It was heart breaking for my mother in law who is over 90 & still in semi-denial of his condition. My husband is equally devastated but incredibly strong considering he & his father are so close, & once, so alike. He appears to be much calmer now that eldest son has departed & absolutely fine around husband & I as we usually see him several times a week.

My concerns are that they have always lived independently, my mother in-law has minor mobility problems & now my father in-law with stage 6. Their house is inappropriate for them to stay. Too many stairs, steep garden, busy road, occasional wandering off, their kitchen/bathroom hygiene isn't great either. Residential care seems inappropriate at this stage. We desperately don't feel he needs it just yet, if at all & separating him from his wife who he remembers seems unfair. He knows husband & I as family just not always sure of our names, though always delighted to see us as if its been a long time, which tugs at the heart strings.

I have suggested that they both come & live with us & we provide a carer 5-6 days a week to keep my father in-law occupied, stimulated & safe & also to give my mother in-law & us support. (We both work full time, have no children, yet!) He has more good days than bad, in fact my mother in-law seems to be more down these days (I can't blame her).

Financially it would be less expensive to have them live with us & provide a carer than residential care & less distressing for the family. (My grandmother has 24hr nursing care at a cost of £850+ per week!)

My husband is concerned about the strain it would put on him & I but frankly this isn't going away if he goes to a care home. We will still want to visit weekly, my mother in-law has to live somewhere, pay the bills, cook etc. so it makes sense to me to be able to control as much of this terrible situation as we can. If they live with us we can provide a loving, secure home with familiar people for both of them. My husband will be able to spend quality time with his father for the remaining lucid years he has. Financially we are ok with minimal savings but not wealthy so we have to think about my mother in-laws future too. Currently she is reasonably fit but who knows what care she may need in years to come & she has it in her to be the oldest woman in the world!!


Are we being selfish wanting him to live with us?
Is it impractical, are we unrealistic?
What does stage 6 bring with it?
Will he live years or due to his decline from stage 4 to 6 in less than 3 months will he pass sooner?

I know whatever we do will not be easy but it feels like we need to make a decision asap for his safety & her sanity.

I'm not sure we have all the facts, especially from people who are in a similar situation. Please help!

Thanks in advance for your replies & sorry for the ramble. sez

 

[Resigned]

Hi

My mother has alzheimers but it was never an option for either myself, my sister or my brother to care for her at home (my father died 16 years ago). We had 24 hour carers for 6 months until my mother no longer remembered her home or her belongings. She has now been in a care home for nearly 3 months - I believe she is at stage 6 in the dementia journey.

I was recently sent this article from the Guardian which may help highlight some of the issues around caring for someone with dementia at home, it may be useful to you.

http://www.guardian.co.uk/lifeandstyle/2010/jun/01/andrea-gillies-mother-in-law-alzheimers

If the link doesn't work, this was published in The Guardian on 1/06/2010 and entitled 'The Raw Horror of Alzheimers'.

I am not able to say whether you should or should not care for FIL at home but do get as much information as you can about what you can expect from the illness, before doing anything, with the best will in the world, this illness takes over our lives, even when we aren't caring 24/7.

R

 

[MJW]

Sorry to be blunt, but yes, I do think you are being unrealistic.

 

[sez]

Thank you R for the link, it was very direct reading, which is what we need. Having only had a few weeks to really deal with this first hand, due to them remaining feircely & amazingly independant until recent it is becoming more apparent quite the task we have ahead & doing what is right for him & his wife.

We have much medical advice but not much in the way of 'front line' advice, hence my first post hear. I appreciate this is a difficult subject but am grateful for the advice.


Thank you MJW, don't apologise for being blunt, but constuctively blunt would help me futher. We are still very much on an emotional roller coaster which i guess never stops but I would be grateful for first hand experiences on what to expect. If we're being unrealistic, as I expect we are, then how? In order for us to make the best decision for FIL I would appreciate all experiences, good & bad, blunt or otherwise!

Thanks again. sez

 

[BeckyJan]

It may be worth you reading the Andrea Gillies book
Keeper: Living with Nancy

This relates how they bought a 22 bedroom mansion in the wilds of Scotland - with a disabled FIL and MIL with developing Alz. They also had 3 children and intended to fund the mansion with bed/breakfasts!

She identifies that this was a colossal impossible task, their ignorance on how a new environment was immensely confusing for MIL. The behavioral problems were embarassing with guests!!

A few years later MIL is in a Nursing Home.

Some people do succeed very well with caring at home for most part of the Alz. journey. If you do, then I hope you have a Plan B should things not work out.

 

[sez]

Thanks, R also suggested this book. Have ordered so await arrival & eye opener!

 

[Margaret79]

Hi Sez

I don't think there's a "one size fits all" answer to your dilema. You have to decide what is right for you. We have decided to buy a house and have my MIL living with us albeit in an annex. I couldn't cope with her in my house and I don't suppose she would cope either! Who knows how that will turn out, we won't be moving until about September.

However, I think we have been realistic in making our decision and intend to look after her at home for as long as possible. We have been lucky enough to be able to buy the house without a mortgage and will financially be ok, without having to go out to work, as long as we don't want expensive cars or holidays etc! I'm not sure how I would feel taking this on if we both had to work.

I personally feel that I want to devote this time to my MIL. I have no elderly parents or children at home and since FIL died we now only have the one to cope with.

We are planning to live the good life for a while, keeping a couple of pigs, chickens and growing our own veg which will keep us busy. This is something we have yearned to do for a long time so I feel that we are in a win win situation in that we will get what we want and MIL will get looked after too.

Rambling a bit here!! Suffice to say that you will have to gather all the info you can and make your own minds up. What is right for one family isn't for another. Good Luck

Love

Margaret xxx

 

[florence43]

Hi,

I just wanted to reassure you. You are going through all the options and that's the right thing to do. Explore all possibilities, look at the long-term strain on the family if he lived with you and compare them to the benefits you feel it may bring. Look back on this forum and some of the difficulties faced by relatives who make the decision to care for their loved one in their own home (and believe me, it's a humbling read) and put yourself in their shoes.

If you have a little time, use it to really consider all your choices, because it's tough whichever way you look at it.

Just wanted to show you some support at this difficult time and let you know that things have a funny way of just working out...

Best of luck,

Annie x

 

[MJW]

Sez,

Sorry, it was a bit of a useless response. I just wrote you a long and detailed reply and then deleted it. Please just read some of the threads on these pages and ask yourself if the experiences these carers go through are what you want for yourself. It's commendable that you want to care for your father in law, but please don't jump into anything while you are still in a state of shock.

 

[PostTenebrasLux]

Hello Sez,

Yes, it can work at home! My cousin is in the very late stages now, totally bedridden, doubly incontinent, immobile, incapable of movement, speech or interaction of any kind and fed pureed food by syringe (or rarely by spoon). Now aged 65, she has had PCA Alzheimer's for 11/12 years now.
At one point, she was sectioned and hospitalised for two months, other than that she has been living at home throughout her entire illness. She has a 24/7 carer and an extensive support system from relatives and friends and neighbours. Personal circumstances are "privileged" but the illness is just the same. We have right from the outset sought the help of every member of the family and have created a loose "rota" of care, whatever the care needs may be. Some of us are "nursing" care, others are "responsible" for the domestic, cooking, gardening, home care, another provides secretarial support in dealing with correspondence, Christmas cards, reminders of appointments etc, another liaises with social workers/hospitals etc. It is amazing how we can all help, albeit directly or indirectly. Just because we are not showering or assisting with personal hygiene does not distract from the ability to help her live at home.
We are 4 full-time carers for the nursing side: her carer: 21 consecutive days at a time, and for the week that she is away: our turn of her daughter, her best friend and I (second cousin). In the last year it has become easier because there is an appointed dedicated professional carer, but for 10 years we have 3 of us taken a week in turn.

I'm sure you'll work something out - sounds like you have your thinking cap on!
Best wishes and whatever you choose, I'm sure you'll do the best by your parents-in-law and your husband.
Martina