My Partner has Diffuse Axonal shearing-TBI- 3 1/2 yrs post- would like ppl to share any experience and advise about issues relating t care

[JAYSEW]

My partner lives in a residential care home, has been there a year and staff are not even trained to meet his needs, i.e to assist him walking, which he needs to build his strength etc.

He has gone from being in a rehabilitation unit, where he was encouraged to engage with other people, do cooking activities, other household things and had plenty of stimulation as opposed to now he is expected to do nothing all day but watch tv, go to the shop and spend too much time alone. 

He is in a wheelchair, has an alarm for emergencies and apart from that above the only assistance he receives is when showering, which involves moving his wheelchair out and back again. 

He has his meals prepared but has no one there to help or over sea him carry out making tea, food etc, which he had access to before. 

They do not promote any activities to get him to engage in community, as they claim to do. They do not promote any independence, or help aid his recovery, 

His flat isnt even adapted for his disability needs in terms of his wheelchair, for his height, except for the toilet, 

He cannot reach the plug sockets, potentially risks falling for those low down and others are constantly left switched on and plugged in when not being used because he cant reach them. Cant reach his clothes in the wardrobe, and he has to ask staff to get him a drink of water, fill up his bottles because he cannot reach the kitchen tap or the sink to wash ant pots, knifes n spoons he wipes and puts them away dirty because he has a tendency to need everything in order. 

Nore can he access the balcony, that he pays an additional 100 per week out of his own money for because it isn't fitted with a stable enough ramp.

He wont raise the issue because he likes it their and fears being told to leave and doesnt want anyone to get in trouble. 

He is not the only resident that has to rely on staff to do things for them that they could do them selves, were their flats adapted for their needs. 

I am in a catch 22 situation and would like to address these issues but not at the expense of causing arguments and him not trusting my given word.

Advise welcome please

[Nutkin33]

Shame. Sounds like he is having a hard time there!

I suffered a Diffuse Axonal Injury as well, in January 2013. I have been very fortunate in my rehabilitation. My sons were very persistent with me at the start, and really worked hard with me to get me out of wheelchair mode. 

Now, I have a little weakness down my right side, which gets worse if I am tired, or ill. I also feel like I am drunk all the time, and get quite wobbly at times! My sense of smell has gone completely, and I have to really concentrate on what I am saying, or I wil slur!

But all things considered, I am very lucky!

All the best for future rehab. Remember, the brain never stops healing, although very slowly!

Debs 👍😉

[Elenor3]

I felt so sad reading your post. It must be hard for you to watch when you know things could be better , but even harder if he won't let you sort out the things which aren't being managed well. I understand how he feels to some extent. Some (much more minor) things have gone wrong during my care and I prefer bit to raise them with NHS - silly I know. Would he listen to anyone else / friend or relative if they raised the matter? Or can you just (in writing) make some non-confrontational requests to the care home explaining your concerns about the plug sockets / balcony access etc.? It needs to be brought to theyr attention in order for them to put things right. Perhaps putting it to his that way he would give you permission to raise it? That said, if it's a health & safety issue, the home may be more likely to address your concerns if theyvev received written notification of potential accident causing issues. I would also seek help from the community neuro team regarding the well bring and emotional issues you raise. Rather than a phone call - I'd suggest setting up an appointment with then at his home so that you can show them the problems you've indentifued. I'm so sorry for your situation Good luck with finding the right help x

[Candace8]

I was in hospital a year and when I left I had 4 careers a day to help me then when I moved back up north I had careers that made me get the bus places and stuff. Didn't want to go but they made me. I do think it really  it just depends on the money available in you area however them that fight will get the help and take the money. Then there's the quiet ones who just have to do without. That's your choice which one will u be. I think you need to be the fighter. Tell them what you have said on here. Demand help, tell them he is not safe. They don't like that cause they at risk of you suing them if something happens, they will be held to blame but you must have this out with them . Right down every name and when you spoke to someone and what about. You can produce this to the nhs each time you ask for help. If they won't help demand why, stop being so nice, doesn't matter who you upset, don't ask don't get or in my case don't demand don't get lol. The only other thing you can do is get someone in. Just a teenager or someone, don't need to be trained. If it's moving the wheelchair , getting glasses of water and doing plugs anyone can do it. Cash in hand. Must be someone someone knows who's nice and trustworthy. Someone not got a job. They could become friends and he will have someone to watch tv with, someone to take him outside in summer. I would really love that type of job cause I'm stuck in most of time and I can't work. 

Hope Iv helped and given you help, I know it's horrid, good luck x

[cat3]

I'm sorry for your plight Jaysew & that of your partner's.

I strongly agree with Elenor that you firstly need to write to the care home manger and, politely but firmly, list the areas where care or safety is lacking.

The fees these care homes receive should cover all these issues and more and, if lacking, improvements need to be implemented.

I understand how you fear 'rocking the boat' in case it unnerves your partner or causes ill feeling, but what you've described is unacceptable in terms of both safety and general quality of life.

So, if it were my partner, a letter detailing the shortcomings would be my first course of action and if satisfactory measures were taken all to the good.

If nothing changes I would contact Headway (via the free helpline.....0808 800 2244) to check for relevant organisations who have the power to intervene in such situations.

Best wishes.   Cat  x

[dillyd]

I too agree with Elenor.

My husband suffered the same injury in a car accident in 2013.

He was at a so called rehab unit for 4 months, the physio & speech & language were great, but if I didn't visit,he would spend hours alone with no stimulation or OT.

In the end Ibrought him home, long before they agreed he was ready.

The first year was really bad, very hard for me, but then Istarted badgering everyone, phone calls, ,letters,emails. I kept copies of everything, took names,insisting on speaking to heads of departments. I wasn't rude, but I was persistent. I think everyone got fed up with me, but eventually it got results.

Appointments need to be where he is living, that way the professionals can see the problems.

Take someone with you to these appointments, a second pair of eyes, & they can-mention things you might forget.

Keep fighting, hubby still has lots of problems, dizziness, loss of short term memory, massive fatigue issues.

But, with help,he is improving, very slowly. Without effective rehab, he would still just be sat in a chair vegetating.

Good luck, hope things improve for you both. Headway will be really helpful if you contact them & everyone on this forum are there if you need us. 

[SAMBS]

Hi jaysew not knowing what D A S is, I first looked it up on Wikipedia. That took me to a website (American) called eurochatt.com and there was a long article about the ins and outs of DAS. How it occurs and effect on the brain. You might  light to start yourself by just typing the DAS words yourself into the wiki search box. 

I'm so sorry to read of your plight though with your husband and hope you do manage to get some better or good support from the Care Home Manager. Print off anything you think is relevant to your husbands situation and take it in with you. It seems it's a very complex condition and form of brain injury, and yes he certainly needs physiotherapist to help him from what I read. Untrained staff are no use if they do not even understand what his condition is. I do hope you manage to find some useful information from the links provided via Wikipedia. 

pS I also agree with the others comments above mine, and do wish you both well for an improvement in the care quality as well as all the H&S issues.