Mum diagnosed with Fronto-Temporal Dementia

[kikiwi89]

Hello, I just joined this forum today. Im a carer for my mother who was diagnosed with FTD in April 2018 when she was 59 when I was 29.over the months since her diagnosis i'm been learning so much about how to adapt and help her try and have a normal life. We have a single handed DQS POC that has been working well for us until recently.

My mum has had a UTI for which she is currently on oral antibiotics, but how she is very hypoactive and I've started to notice she is unsteady on standing on her feet and climbing the stairs and even sturggling to stand up from the sofa which she didnt have a problem with a month ago. Furthermore she now finds it difficult to get into and out of the bath tub. I want to continue to look after her in her home but I was wondering whteher anyone has advise on how I can make her home more suitable for her. We dont have any medications to manage her FTD. I feel like we have falllen through the cracks of the social and health system. This week the newest change is she is now holding her spoon but unable to manoever her hand to her mouth without some guidance. This is such a devastating disease, and sometimes I cannot believe how much has changed in a year. Any advise would be great! Thanks.

 

[DesperateofDevon]

Hi I couldn’t read & run, which part of the world are you from?
What is dqs poc?
Sorry

 

[kikiwi89]

Hi I couldn’t read & run, which part of the world are you from?
What is dqs poc?
Sorry

hi! I'm from England. sorry tht was my typing error *QDS POC is 4 times a day carer visits to my mother's home

 

[Izzy]

Hi @kikiwi89 and welcome to the forum.

I’m sorry that things are so hard for you just now. Has your mum had an assessment from an Occupational Therapist? If not then you should try to get a referral as soon as possible. The OT will advise on any adaptations to the house or any piece of equipment that might help your mum. I got grab rails for the shower/bath and throughout the house where they thought they would be useful. They also provided a walking frame and arranged a wheelchair assessment. Eventually they provided us with a shower seat and then a bath lift. They also advised on basic moving and handling (just in terms of getting my mum/my husband to stand from sitting in a chair etc).

I also had a referral to a speech and language therapist (SALT) when my husband was finding it difficult to swallow and was in danger of choking.

Ask your GP surgery to see if they will make the referrals. I believe it is also possible to self refer but I’m in Scotland so things might be different here.

Please keep posting. You’ll get lots of help and support here.

 

[DesperateofDevon]

hi! I'm from England. sorry tht was my typing error *QDS POC is 4 times a day carer visits to my mother's home

hi, apologies I’m in England as well ..
You need to contact the GP. Clinical mental health team who diagnosed your mum should have a psychiatric nurse that is your contact point. O/T assessments for mobility issues are required & you can self refer for these I found out last week!!!!!

community nursing team are another good contact point & I keep everyone in the loop & email ( you need to become a pain really & push continually!) Eventually you will find a contact point that will take you & your Mums issues seriously.

social services access team also need a phone call to assess your mums needs! Do it ASAP as bad days hold more sway!
My mum was diagnosed in 2014 & only this summer did I actually get the help she needed in!

 

[One Moment At A Time]

Welcome to this "blessed forum", I live in the USA, I congratulate you for your great concern for your loved one, I honestly have empathy & understand your "Ianguage", I been Dx with early stages of AD & I'm medicated too, my "Higher Power" on earth are my dear wife, daughter & son.

I know the side effects of my Dx it not easy to handle especially for my dear wife, often times I feel, depress, anxious, lonely & at times with mood swings.

What's a "relief" for my loved ones & I, I regular see health care providers, attend AD surport groups & AA meetings (I'm friends of Will W. & Dr. Bob, I'm an ex problem drinker) & disabled USA Army veteran.

Here in the USA for persons with this Dx like mine, among others, there is some help from the Social Security Administration & the Dept., of Veterans Affairs.

My advise to you is to respectfully be proactive reaching out (at the location where you live), to government official's offices & non profit organizations ---> on your loved one's behalf. Honestly wishing you & your loved ones the very best. One Moment At A Time / Baby Steps Easy Does It & the plan of the 24 hrs., segment.

 

[TNJJ]

Welcome to this "blessed forum", I live in the USA, I congratulate you for your great concern for your loved one, I honestly have empathy & understand your "Ianguage", I been Dx with early stages of AD & I'm medicated too, my "Higher Power" on earth are my dear wife, daughter & son.

I know the side effects of my Dx it not easy to handle especially for my dear wife, often times I feel, depress, anxious, lonely & at times with mood swings.

What's a "relief" for my loved ones & I, I regular see health care providers, attend AD surport groups & AA meetings (I'm friends of Will W. & Dr. Bob, I'm an ex problem drinker) & disabled USA Army veteran.

Here in the USA for persons with this Dx like mine, among others, there is some help from the Social Security Administration & the Dept., of Veterans Affairs.

My advise to you is to respectfully be proactive reaching out (at the location where you live), to government official's offices & non profit organizations ---> on your loved one's behalf. Honestly wishing you & your loved ones the very best. One Moment At A Time / Baby Steps Easy Does It & the plan of the 24 hrs., segment.

Thanks.It is a hard slog through!

 

[DesperateofDevon]

Welcome to this "blessed forum", I live in the USA, I congratulate you for your great concern for your loved one, I honestly have empathy & understand your "Ianguage", I been Dx with early stages of AD & I'm medicated too, my "Higher Power" on earth are my dear wife, daughter & son.

I know the side effects of my Dx it not easy to handle especially for my dear wife, often times I feel, depress, anxious, lonely & at times with mood swings.

What's a "relief" for my loved ones & I, I regular see health care providers, attend AD surport groups & AA meetings (I'm friends of Will W. & Dr. Bob, I'm an ex problem drinker) & disabled USA Army veteran.

Here in the USA for persons with this Dx like mine, among others, there is some help from the Social Security Administration & the Dept., of Veterans Affairs.

My advise to you is to respectfully be proactive reaching out (at the location where you live), to government official's offices & non profit organizations ---> on your loved one's behalf. Honestly wishing you & your loved ones the very best. One Moment At A Time / Baby Steps Easy Does It & the plan of the 24 hrs., segment.

my Dad has AD & even now at the late stages of the disease his sense of humour is seen at times. I think you have a loving family to share to us & downs with. I like to have a giggle at life & am often found to be humming “always look on the bright side of life” a monty python fan my Dad has that twinkle still!

 

[One Moment At A Time]

Thanks for your reply, I'm 58 yrs., old male, [ex problem drinker], by the grace & love of a Higher Power of my understanding, for some time I been having fellowship with Bill W. & Dr. Bob's friends, been Dx with early stages of AD, I'm thankful to HIM because I could still drive & do some errands, I can't complain my situation could be worse, (I have a "saint" -- my dear wife of over 36 yrs., marriage, two wonderful children & two "treasures" ---> two grandsons 9 & 12.

Yes! I have found that humor is inddeed theruepetic, as well as keeping my mind active (tv, listening to music, helping my wife with the errands of the house, "word-finds", reading ...,).

Looking after my "little friend --> chispee" (chihuahua).

Best wishes & lots of blessings, One Moment At A Time

 

[DesperateofDevon]

Thanks for your reply, I'm 58 yrs., old male, [ex problem drinker], by the grace & love of a Higher Power of my understanding, for some time I been having fellowship with Bill W. & Dr. Bob's friends, been Dx with early stages of AD, I'm thankful to HIM because I could still drive & do some errands, I can't complain my situation could be worse, (I have a "saint" -- my dear wife of over 36 yrs., marriage, two wonderful children & two "treasures" ---> two grandsons 9 & 12.

Yes! I have found that humor is inddeed theruepetic, as well as keeping my mind active (tv, listening to music, helping my wife with the errands of the house, "word-finds", reading ...,).

Looking after my "little friend --> chispee" (chihuahua).

Best wishes & lots of blessings, One Moment At A Time

don’t laugh ... it’s not funny really but my eldest dog has dementia! Her nick name was Sadie the wonder dog! It was a wonder how she never got mown down by a train as she was an escape artist with a fascination for railway lines!!!
Now it’s dementia dog ! at least she’s happy in her own little world & still recognises us, but it’s humbling to see that love & recognition.

Gives me hope