moms downward spiral with vasical dementia

[sjcares]

Hi all, Mom was quite well with vascular dementia, coping well, still cooking and shopping, doing light housework etc. Until July, it first started with the tooth ache which she suffered for nearly a week without telling me. Took her to the dentist he x-rayed the tooth and assured me, there was no abscess or infection and he could take the tooth out

Mom wanted to go on antibiotics even when the dentist said she didn't need too. Mom didn't take the meds, we went back to dentist and mom had tooth out two days later. I had mom stay with me for 4 days, as everyone knows it was hot with the heat wave, mom was ok, drinking plenty of tea and cool drinks and having salt rinses twice a day also enjoying her food, Mom wanted to go back home, so thinking everything was fine let her, she told me she done her shopping and had plenty of food in. I rang every night and she told me what she had to eat and drink and that her gum was healing with the salt washes.
She came back to stay with me the next day, it was very hot and I had to prompt drinking her flavoured water, then I noticed she wasn't going to the toilet. I prompted and prompted a few hours later mom was slurring her speech so me and my son called 999, thinking she was having a stroke. My local Hospital discharged her with antibiotics for a water infection. Mom had the support team in caring along with me for two weeks, mom wouldn't take any meds drink, antibiotics, wouldn't eat, or go to the loo, also was suffering constipation due to lack of drink and food, Fell and banged her eye badly and had a big bump on her head, Rushed to hospital and was put on a drip to give her fluids, had tests treated her for constipation. didn't test urine for water infection just tested bloods and did the dip stick test, wasn't given any more antibiotics. Was in hospital for three weeks awaiting an enablement package of care on discharge. Had carers calling in for two hours a day, 30 mins each call, if mom didn't want to wash, dress, eat, drink, take med she wouldn't. It was all left to me, I was locked in for 17 days as mom may have wandered ,24 hours disrupted sleep, social worker and psychiatric nurse visiting to access me as well. Me and carers prompted mom to use phone, microwave, telly, Mom couldn't and had forgot how to use these things, Still had days when she wouldn't eat or drink and take her meds. I was with a carer prompting her meds when mom with her mood swing was ranting and raving about sick of hearing our voices, stormed off up the stairs, I told her to hold on to the rail, but alas she fell from top to bottom, luckily didn't break anything only bruised her bottom and had a nasty bump on her head. In hospital with another water infection through lack of drinking and holding fluids in and doesn't empty bladder for hours and hours, the longest was 17 hours. Now I'm having to apply to the court of protection to hopefully become a deputy, as mom wont sign a POA. Is going into respite care 15 miles away from my home and I have no transport to see her. It has all happened so fast, I'm upset scared and exhausted, plus my son thinks I'm callous as I want to think about a care home now, as There is only me her daughter to look after her and I have a disability myself and cant cope. I feel so upset for mom but how much more care can I give, this illness is wicked and cruel. But it seems to have happened so very very fast. as anyone had this happen, from someone coping quite well to a rapid decline ?

 

[marionq]

If you have a disability and find this clearly challenging behaviour too much to handle then ignore your son and do what you must. There are so many cases of emotional blackmail on TP either from those needing care or from other relatives who couldn't do it themselves.

This is such a difficult illness and anyone who undertakes care has to be able to care for themselves too. Not always easy.

 

[CJW]

You are going through a tough time. Perhaps including your son in caring and meetings with carers, social worker and GP would help him to understand the situation..Good luck...

 

[Lisajk]

So sorry to hear about your troubles. I've found with MIL's Vascular Dementia, with every water infection/seizure she gets worse and doesn't seem to recover. It's a step decline which you can mark by UTI instances. I struggle to keep the UTI's at bay as she's catheterised and is a reluctant drinker.

 

[Benrese]

Vascular dementia tends to have a stepped-type progression. This means that someone with Vascular Dementia may stay at a specific state for an extended time, then seemingly out of nowhere take a dive and you will see greatly diminished areas, that were very recently OK.

I learned about this by reading about the various qualities of Vascular Dementia on this site and in general.

My step-mum-in-law has this and we are currently knee deep in some difficult times.

Hope you are able to get some support.

 

[sjcares]

Thanks to all of you that have responded, it's so comforting to know I'm not alone in a scary time for me and my mom. Mom is also very reluctant to drink, isn't incontinent as yet. She wont take any meds, eat, drink and holds urine within her bladder for hours on end. Each day is different, some days she will eat, drink, but take no meds. others she will take meds but wont eat or drink. the hospital have scanned her bladder and report the same findings as me, she only empties her bladder once a day. She is likely to have repeated water infections. What I didn't know is that recovering from these UTI's leaves the dementia patient unable to remember things they were doing a few days ago. I showed mom how to use the telly, microwave many many times and been supportive. Medical staff don't tell you that these UTI's can cause loss of further memory and mental ability. Leaving us carers bewildered and scared for our loved ones. We as carers, are not doctors or nurses and we all do our best. My mom as got so bad social worker are talking about care homes, and I have found it very difficult and stressful to cope, as mom has, poor love, been very confused and angry at times.

Just hope my son calms down and stops making a differ cult situation worse for all concerned, Just hope I can get good advice from a solicitor. I feel so sorry for mom, she told me in one of her lucid moments that, I Shouldn't have to put up with it. She knows how hard I work and try, to make her life comfortable as possible. I know mom is really frighten and now believes there is something wrong with her where she as been in denial for four years, hence not signing a POA. I'm so scared as I'm on benefits but will hope and will take each day as it comes while she is in respite for two weeks. Seeing solicitor soon . HUG TO ALL . sjcares.

 

[sjcares]

I have included my 30 year old son in all meetings with doctors social workers and the like, but he remains angry at me as doesn't want his nan in a home. He strops about the hospital and even told moms consultant he would want his nan resuscitated, when the doctor called us both into his office. When I her daughter and next of kin wouldn't want my mother put through that, my moms brothers have agreed with me. I'm her next of kin her only daughter and decisions have to be made for my poor mom. It's upsetting but I need to also look after myself , get a job and think of my future, disability or not. I will get the best care for my mom her money can buy as she will be self funding. It's upsetting as she doesn't want to go into a home and wants to remain at her home of 57 years, If it was a bungalow or two bed flat I wouldn't hesitate to get her paid 24 hour care, me visiting once a day, but as she as fallen down the stairs due to these UTI's She's become a danger to herself. I feel so upset guilty and afraid for my mom, It's so hard to make these decisions with your loved ones when they try so hard to remain at their best. Thanks to all for advice, I didn't know these UTI's could make my mom never gain back her abilities to function at the same level before her UTI. HUGS TO ALL sjcares

 

[saucepan]

Hi SJ
I am so sorry to hear about what you are going through. I find myself in a similar situation with the rapid decline of my Dad. He was diagnosed with Alzheimers in July. He lives on his own and has a partner who lives a mile away. My sister and I both live an hour away.

He has been losing his abilities quite rapidly it seems and is unable to make basic decisions, use every day items, wash himself, change his clothes etc. He had a fall 3 weeks ago and we found him delirious on the kitchen floor. He was taken to hospital and treated for pneumonia where he stayed for 6 days. He was home for a few days and then the private carers we had organised started coming in morning and evening with meals on wheels for lunch. He hasn't responded well to the carers and gets very agitated at times. Then last week he started wandering, trying to get out of the house in the middle of the night. He also on two different nights had night terrors, where he was shouting, screaming, banging doors and windows, wild eyed with delirium and hyper ventilating. He was very scared. I was also very frightened on the night I stayed. The other occasion his partner witnessed it and called 999.
He has started to become incontinent and is pushing even his partner away and carers out of the door.

The GP thought is was a urine infection but that has come back negative and they now think it is residue delirium from the pneumonia. It just seems to be a very rapid decline.

We ended up getting advice to contact social services, as non of us knew what to do next. They arranged an urgent assessment and came the next day, a wonderfully experienced woman came and Dad point blank refused to go into any type of respite and as we don't have LPA we can't force him to. She immediately got the ball rolling with the GP to check his meds, and refer Dad urgently to memory clinic. With many phone calls later the medication was changed that day. On monday he is going to be assesed by the Older Adult Mental Health team. I think they will asses if he has mental capacity and may take him away to asses this. I really don't know what will happen next, as far as my sister and I are concerned, he is not safe to live on his own, his partner is determined to keep him at home as long as possible. We don't have the money for full time care so we would have to sell the house to pay for it. My sister and I both have our own businesses and have lost far too many days in the last month, which means loss of income and although we are lucky to have very understanding clients we can't continue to let them down by dropping everything to rush over to Dads.

I really hope you can get some help from your solicitor and I totally agree with you, the safest place for your mom to be would be in a care home, and you need to be able to get on with your life, and this is what your Mom would want if she was of sound mind. As for your son not agreeing with the care home option, I wonder if he would be prepared to take on the role of carer? He might try it and realise just how hard it is and accept and support your decision, or he may find he has a true calling and be a natural born carer.

Am thinking of you and wishing you all the best, you are not alone.

 

[RedLou]

I had no idea that UTI's affected vascular dementia but my father's decline makes total sense now. Thank you for sharing your story. You may have assumed you were merely seeking reassurance, but at the same time you were also giving it.
You are doing your best, which is all any of us can do. And as you are not giving yourself a pat on the back, I will do it (virtually!) for you.

 

[sjcares]

I had no idea that UTI's affected vascular dementia but my father's decline makes total sense now. Thank you for sharing your story. You may have assumed you were merely seeking reassurance, but at the same time you were also giving it.
You are doing your best, which is all any of us can do. And as you are not giving yourself a pat on the back, I will do it (virtually!) for you.

Thanks to all, and I've been comforted by what you said, Redlou, I just feel so guilty, as I'm sure many thousands do, when we have to think of putting our loved ones in a perm home. It's scary applying to court of protection as this could take many months also awaiting a place for mom In a home in Stafford. There as been new developments regarding moms dementia health, wandering and taking peoples things, a nurse told me mom went into a patients room and was about to put a pillow over the persons face, stripped off and entered a males room. Also, was told that she keeps scratching the bridge of her nose until it bleed. She is about to have further assessments to see if it could be down to pain, UTI's or a further decline in her dementia health. So upsetting and worrying for us all.