Fronto Temperal Lobe Dementia

[Yardman]

Hullo, my wife of 50 years was diagnosed this year with the rare form of Dementia as above. She is aged 75 years and I am 74. Coupled with this the year before she had Streptacoccis/ Sepsis involving a major skin graft of the right leg and therefore has limited mobility. However having been critical in the ICU, and 3 months in hospital all her life skills were wiped clean.
Iam the 24/7 carer, and go to a monthly support group.As this illness progresses do you have experience coupled with any advice. Thanks.
Yardman

 

[Grannie G]

Welcome to the Dementia Talking Point [ DTP ] community @Yardman. I hope you will find it helpful and supportive.

I don`t have experience of the struggles your wife has but I do have experience of caring for a husband with dementia.

It took me a long time to accept advice which was given to me from others here which was to try to get as much help as possible.

24/7 caring is exhausting and introducing day centre care or agency carers gradually can help prepare you for a time when solo 24/7 caring may not be enough to meet the needs of the person with dementia.

I used to find a monthly support group a very good way to meet other carers and discuss strategies for coping with progression of the illness.

I hope you will continue to post here. There are many people who have experience of Fronto Temporal Lobe Dementia [ FTD ] and I hope they reply to your post.

 

[Yardman]

Welcome to the Dementia Talking Point [ DTP ] community @Yardman. I hope you will find it helpful and supportive.

I don`t have experience of the struggles your wife has but I do have experience of caring for a husband with dementia.

It took me a long time to accept advice which was given to me from others here which was to try to get as much help as possible.

24/7 caring is exhausting and introducing day centre care or agency carers gradually can help prepare you for a time when solo 24/7 caring may not be enough to meet the needs of the person with dementia.

I used to find a monthly support group a very good way to meet other carers and discuss strategies for coping with progression of the illness.

I hope you will continue to post here. There are many people who have experience of Fronto Temporal Lobe Dementia [ FTD ] and I hope they reply to your post.

 

[Yardman]

It is 2.10am my wife has got up with my help and is sitting in the dining room on a high chair. Despite my efforts she will not go and sit in an easy chair. Her personality has changed in the last few days. More verbally aggressive and far from reality. Having been the carer for nearly 2 years with few breaks and very limited family support.It looks as though I will have to get assessments done. Not the best time of the year. Yardman

 

[Dimpsy]

It is 2.10am my wife has got up with my help and is sitting in the dining room on a high chair. Despite my efforts she will not go and sit in an easy chair. Her personality has changed in the last few days. More verbally aggressive and far from reality. Having been the carer for nearly 2 years with few breaks and very limited family support.It looks as though I will have to get assessments done. Not the best time of the year. Yardman

3.00am - These are the darkest hours @Yardman, when worries multiply and you feel so alone.
Take comfort, there are many of us in the same sleepless state, I've just made a cup of camomile tea and checked again on my mum (PWD).

It does sound as if your wife's FTD has bought on some changes to her personality and having her assessed should give an indicator of that and what her/your options are.

Thinking about it, would your wife drink camomile tea, it can aid sleep (although not in my case!).

Today is midwinter, the shortest hours of daylight, hurray, from today we are heading up the other side towards spring.

 

[Delilah63]

It is 2.10am my wife has got up with my help and is sitting in the dining room on a high chair. Despite my efforts she will not go and sit in an easy chair. Her personality has changed in the last few days. More verbally aggressive and far from reality. Having been the carer for nearly 2 years with few breaks and very limited family support.It looks as though I will have to get assessments done. Not the best time of the year. Yardman

 

[Grannie G]

I hope you both managed some sleep eventually @Yardman and @Dimpsy They are indeed the darkest hours.

I remember a neighbour who lived across the road from me. She had agoraphobia and also sleep problems. She told me she would look out of her window in the early hours and was comforted when she saw my lights on, knowing she was not the only person in the world awake at that time.

Hope for a better day today.

 

[Yardman]

I hope you both managed some sleep eventually @Yardman and @Dimpsy They are indeed the darkest hours.

I remember a neighbour who lived across the road from me. She had agoraphobia and also sleep problems. She told me she would look out of her window in the early hours and was comforted when she saw my lights on, knowing she was not the only person in the world awake at that time.

Hope for a better day today.

I hope you both managed some sleep eventually @Yardman and @Dimpsy They are indeed the darkest hours.

I remember a neighbour who lived across the road from me. She had agoraphobia and also sleep problems. She told me she would look out of her window in the early hours and was comforted when she saw my lights on, knowing she was not the only person in the world awake at that time.

Hope for a better day today.

 

[Yardman]

We did not get back to sleep. My wife became obstructive in the early hours, and when I endeavoured to wash and dress her. It is now 10am and Iam doing the household tasks and she is alsleep. Due to her worsening situation I have cancelled our annual trip for a Christmas Day Lunch.
Respite and Day Centres will have to researched in The New Year. Yardman

 

[Grannie G]

Oh dear! It is such a struggle.

 

[Yardman]

Its 5.20am. I have been awake for an hour or so, A time spent thinking about the options for the future. Actions to be taken if at all possible during the down time of Christmas and the New Year. It is likely I will have to self fund respite etc. You are looking at around £1100 to £1500 per week plus. All our savings are now vulnerable.
I have looked at many members postings. We don't have friends, good neighbours yes, but they have their own problems. 2 sons in their 40's. One openly caring but lives away. The other down the road thinks currently. A 20 minute visit every 3 months and a text every 2 weeks is sufficient. Setting up future support for my wife will be down to me. My wife spent over an hour at the beginning of the night talking to someone and holding a conversation. She laughed several times. Tonight we have managed to sleep most of the night to make up for the 2 previous nights without in thei lounge on reclining chairs.Patience has been tested fully and like many others anger has had to be controlled. Carpet strips between rooms have now become barriers to be confronted like fences or holes in the ground. Getting to sit down in chairs has become a stretched out process. Meals are not enjoyed and there is now wastage.The decline has been dramatic over the last few days. It is clear I won't be able to carry on like this. Yardman

 

[Philbo]

Hello @Yardman

Sorry to hear about your situation.

My wife was diagnosed with FTD 6 years ago, aged 63 and at that time, her personality had certainly changed a lot. It had taken around 18+ months to get to that stage and it progressed quite quickly from the forgetful, repeating herself issues, to suffering mood swings, grumpiness and a bit belligerent.

However, she quite quickly withdrew into her own little world, where the anxiousness and paranoia were gradually replaced by less self awareness, loosing much of her communication abilities along the way. It has been some comfort that she seems to have been in a happy place, always laughing and giggling (maybe from happy childhood times?).

It has still not been an easy ride (is there ever such a thing?) and she has recently gone into nursing care and the downward spiral definitely seems to have speeded up.

This will be our first Christmas apart since I met her in 1969, so is going to be difficult for me.

I hope you get through it without too much drama and are able to sort things out in the new year.

Regards
Phil

 

[Yardman]

Hello @Yardman

Sorry to hear about your situation.

My wife was diagnosed with FTD 6 years ago, aged 63 and at that time, her personality had certainly changed a lot. It had taken around 18+ months to get to that stage and it progressed quite quickly from the forgetful, repeating herself issues, to suffering mood swings, grumpiness and a bit belligerent.

However, she quite quickly withdrew into her own little world, where the anxiousness and paranoia were gradually replaced by less self awareness, loosing much of her communication abilities along the way. It has been some comfort that she seems to have been in a happy place, always laughing and giggling (maybe from happy childhood times?).

It has still not been an easy ride (is there ever such a thing?) and she has recently gone into nursing care and the downward spiral definitely seems to have speeded up.

This will be our first Christmas apart since I met her in 1969, so is going to be difficult for me.

I hope you get through it without too much drama and are able to sort things out in the new year.

Regards
Phil

 

[Yardman]

Thanks Phil for that insight. The situation has now changed. I had to call the Ambulance yesterday morning and my wife is now in hospital as I spent an hour and a half trying to wake her. We entered the hospital at about 10.30am I left at 9.45pm, yes that's right. There is a possibility they will try to discharge her before Christmas Day. I shall stand firm as after about 2 years without a real break and very limited family support I cannot now deal with the situation. Today I hope to trigger a self funded care package in a Care Home.
After a long day yesterday and a long period of caring the roller coaster of guilt, sadness and reflection of 50 years of married life is beginning to hit me. I hope when this difficult time of the year is over I can re-discover some sort of life, but still support my wife in her difficult journey Yardman

 

[Izzy]

I’m so sorry to read your update. Such a difficult time of year to cope with it all too. I think you’re right to stand firm. I hope you can get the care sorted easily. Wishing you strength.

 

[Cat27]

I think you are right to stand firm @Yardman. I wish you strength.

 

[Sarasa]

@Yardman, no real advice, but stand firm in your resolve that you need more help and cannot have your wife at home on the same terms as before. Hope today brings better news on her health and the start of a way forward for help for you both.

 

[Philbo]

Hi again @Yardman

That is exactly what I had to do back in August. My wife was admitted to hospital just before the end of a 2 week respite stay. I arrived back in the early ours to get a call from her sister explaining that the care home had called for an ambulance.

On my arrival at A&E, I was horrified to see the state of her. She'd gone from being fully mobile (although she was shuffling a lot more) to being unable to stand at all. The hospital were looking to discharge her "back to the care home" until I informed them that she was due to come back home in 2 days! I said that in her current (immobile) condition, there was no way I could care for her, so they needed to get the wheels in motion with whoever was needed, as she was going nowhere! So she spent a week on a ward, whilst the OT's, medics and hospital-based social worker team (who never actually came to see us, just exchanged phone calls!) procrastinated.

They ended up transferring her back to the care centre for a 6 week assessment (funded by the NHS). Although they tried to re-enable her, it was obvious that she was not going to regain her mobility. A case worker was assigned and I prepared myself for a battle, as I fully expected them to recommend a home care package, which I didn't think would be appropriate.

The their credit, at a best interest meeting, the case worker said that residential care would be the best option for my wife so this went before the LA "panel" who agreed that she needed a nursing home. Which is where she has been since the end of September.

My wife was just on the upper threshold of the financial criteria and with the reality that nursing home costs would quickly deplete her savings, they thankfully agreed to sort out these arrangements and after a financial assessment, my wife has to contribute her state pension and half of a small occupational pension each month (4 weekly). This is obviously a lot less than it would have been, if we had needed to fully fund ourselves, especially due to them getting the NH place at the LA rate.

So good luck with sorting things out for your wife and just as important, look after yourself too.

Phil

 

[Yardman]

Hi again @Yardman

That is exactly what I had to do back in August. My wife was admitted to hospital just before the end of a 2 week respite stay. I arrived back in the early ours to get a call from her sister explaining that the care home had called for an ambulance.

On my arrival at A&E, I was horrified to see the state of her. She'd gone from being fully mobile (although she was shuffling a lot more) to being unable to stand at all. The hospital were looking to discharge her "back to the care home" until I informed them that she was due to come back home in 2 days! I said that in her current (immobile) condition, there was no way I could care for her, so they needed to get the wheels in motion with whoever was needed, as she was going nowhere! So she spent a week on a ward, whilst the OT's, medics and hospital-based social worker team (who never actually came to see us, just exchanged phone calls!) procrastinated.

They ended up transferring her back to the care centre for a 6 week assessment (funded by the NHS). Although they tried to re-enable her, it was obvious that she was not going to regain her mobility. A case worker was assigned and I prepared myself for a battle, as I fully expected them to recommend a home care package, which I didn't think would be appropriate.

The their credit, at a best interest meeting, the case worker said that residential care would be the best option for my wife so this went before the LA "panel" who agreed that she needed a nursing home. Which is where she has been since the end of September.

My wife was just on the upper threshold of the financial criteria and with the reality that nursing home costs would quickly deplete her savings, they thankfully agreed to sort out these arrangements and after a financial assessment, my wife has to contribute her state pension and half of a small occupational pension each month (4 weekly). This is obviously a lot less than it would have been, if we had needed to fully fund ourselves, especially due to them getting the NH place at the LA rate.

So good luck with sorting things out for your wife and just as important, look after yourself too.

Phil

 

[Yardman]

Thanks Phil and others for your input. The current situation is that my wife remains in hospital until at least Friday. Yesterday I visited 2 local Care Homes with 'Outstanding' and 'Good'. Standards.There was really no comparison and I selected the 'Outstanding' one. This one is/was prepared to do an Assessment prior to a discharge date being known and take my wife in, even on Christmas Day. This will not now happen. The other wanted £400 extra for Respite for an Assessment and Administration which couldn't be done until after Christmas. At this stage nothing has been too much trouble with the Managment. I hope this continues. I have opted for Respite leading to Permanent.
My neighbour who like me had experience in the Care area was an asset, and asked questions I hadn't thought of. Another tip I had been given when choosing was to check the toilets and any smells about the place.
How have you dealt with the Guilt aspect in putting your relative in a Care Home? Packing her clothes is stressful
Did you visit during the Respite? Yardman