Leaving pals home alone

[poppies]

Hi everyone. I could not find a thread on this topic and would really appreciate feedback. I do everything for my husband as he has lost his speech and use of his hands and arms. He is still walking, although with difficulty. It is worrying me that he is on his own when I go out. I try to keep it to the bare minimum but have to go out to fetch the children from school and to lift them to sports etc. Sometimes the lifting is in the evening. He cannot feed himself so I don't have to worry that he will choke on food while I am out, but my concerns are around safety and security. What if he has a fall? What if there is a break in (there was a burglary a few houses away a few nights ago)? I just don't know what to do. We live in the suburbs with no family or friends near enough to pop in when I go out. Does this mean we need to consider having someone move in with us (perhaps my mother) to be here when I go out. Sorry if I am rambling. Please tell me how you handle this issue in your lives. Thanks so much.

 

[gooseberry]

You could.get a.medic.alert type system. In another thread someone said va pays for it if you have those benefits. I am in the same boat .i get up at 4 am for work so I can be home by 2. My pals only has about 2 waking hrs alone that way. He still has use of his hands so he will text me. I grocery shop at 530/6 am on the weekends when he is.asleep.and.so is my son. It makes a lot of things harder on us as cals between our worrying and needing to get the basics done.

My mother in law has emergengency alarms installed at knee level thruout her apartment in every room. You can set them to call emergency services. It youhave an alarm system I wonder if they could be added.

 

[cheerleader]

Poppies and gooseberry, think we all struggle with this. Poppies, don't know how your insurance works, but here we can get home health care up to 4 hours a day. The problem is WHEN our pals agree to have someone come in to help! Mine is not ready for that emotionally, so I just have to worry when I am gone. We do have a medic alert system, as well as a cell phone by his side but know his weakened arms might keep him from being able to use either! Wouldn't it be wonderful to have a few hours a day (or even each week!) when we didn't have to worry? The one agreement we have is that he will never shower without me at home, and will not go outside except on our front porch. That does keep the chances of falling down a bit. Hugs to all of us loving our hubbies and being unable to always protect them! Donna

 

[gooseberry]

Donna, thats my problem. He wont agree...says its not necessary. Had him agree to not shower without me home and this week came home twice to him showered. He insists he can walk 100 yds but I asked if you did, what would happen, ...he said he would sleep most.of the day once he could breathe. So, so stubborn!

 

[4tloml]

Not sure what's available there. Here, we've gotten my mother, who has Parkinson's, an alert system that automatically calls if she falls. (It's even called when she's bent over too quickly when I've been with her--so I know it works well!) She wears it around her neck and it has a big button that can be pressed or pushed against something to signal as well. I got it through our local university medical system geriatric unit.

That is such a worry and difficult situation. I hope a solution rises quickly for you and with it, a little more peace of mind.

 

[cheerleader]

This thing called "male pride" is difficult! Last week he slid off the edge of the bed and couldn't get up because of no arm strength. I tried to help him- it took 1 hour to get him up, and we were both exhausted! Would he let me call a neighbor? Absolutely not! Am thinking about ordering a hoyer lift because as a friend said, " it's not a matter of IF he falls again. It's WHEN he falls again!" Think we have to take the attitude we will do ALL we can, within the parameters of what they will allow us to do. The " not necessary" is my husbands line, too! Will tearing our hair out help? Lol

 

[JimInVA]

When the nasty fall happens, one tends to wise up in a hurry. Unfortunately, it is the nasty fall that often has consequences of broken or torn things. And I've heard it said, time and time again, "PALS don't recover from injuries well at all... and from some, there is no recovery." For us, it was a frank conversation... an agreement that we were trying to make the best of this ride we find ourselves on... and not to risk the health and well-being of either of us (PALS/CALS are joined in this) on vanity or pride...

Jim

 

[4tloml]

"and not to risk the health and well-being of either of us (PALS/CALS are joined in this) on vanity or pride..."

Wise words.

 

[gooseberry]

Trying to convince my husband to use a shower chair. He complains all the time about how tired he gets taking one but wont agree. Think I am going to just get one and set it up

 

[cheerleader]

Omg Gooseberry- are we married to the same man? Ours is sitting in the closet holding clothes!

 

[vzandt]

After he fell ( and broke his finger) I cleaned his bathroom spotless and put the chair in the shower with all his " cleaning" stuff in a tote beside it. Done. He really had no say.

 

[gooseberry]

Cheerleader,Maybe they were cloned at birth! Lol! Steph

 

[affected]

Of all my fears leaving Chris home alone when he was mobile, of course he had all his serious falls when I was at home, often when I was very close to him physically!

I wish I could give advice, but I had the same issues, with FTD thrown in.

He fought me having anyone here when I had to go out saying he was fine and that anyone could fall and injure themselves when home alone and that if he did, well he was going to be bedridden soon anyway.

The falls are serious. Yes it's not 'if' but 'when'. PALS have died in falls far more commonly than you may imagine. Almost worse is when PALS injure themselves and hasten progression.

I wish I had the answers, I watched so many health professionals explain things to Chris and I tried all kinds of angles, but it took serious injuries and loss of independence as a result before he would accept that I would no longer leave him home alone.

 

[Barbie]

I will tell you how I did it in the beginning with my husband...arms and speech went first, walking was very dangerous but could be done. too manly to use a walker so he fell a couple of times, including in the bathroom and split his head open (butt naked of course) and once in public (that is not embarrassing at all...) I had 4 kids in school at home and I had to take over our family business when he became ill. So at first I would go to work at 10 and the oldest kids came home at 2:30 so not so long by himself. I fed him big breakfasts, and then kids made him smoothies. I was a nervous wreck, and every time I could not get him on the chat I would rush home to check on him. After the big fall in the bathroom I told him either he gets a scooter or I would close the business and we would go on welfare. we bought a small inexpensive scooter, (less than $500) and he rode it around the house. it really helped save his energy and protected him from falls and danger. it was also easy to breakdown and take in the car and we called the kids our pit crew because they could do it so fast. he did not mind going out in public in it as you see so many people using them. he sort of hung his arms on the steering column and had enough strength to drive it slowly.

That scooter was the best investment ever--and made his life so much better and more fun for all of us. we were able to sell it for about$300 so no big loss.

He also fought every aid like commode/shower chairs. he preferred to be naked and have me and 2 kids push pull and drag him onto the toilet. It was ridiculous...took a while but finally I got fed up and I just ordered a commode chair, put it together and told him to give it a chance for a week. he loved it! and his first shower in it was heaven!

as far as kids and activities and school--we had to limit those of course. it didn't make me happy but it was what had to happen. I did have a daughter who was in a competitve sport and hated to take her out. so I sent out an email to everyone I knew and asked if anyone would be willing to pick her up form school and take her to practice and then bring her home--even if just one day a week (she practiced 5 days a week). two people volunteer to split it. and I tell you the truth, they were not my best friends or people who I thought I would turn to. but they cared and wanted to help and were looking for a way to do it. I also had another mom take my kids to the doctors for check ups a couple of times. they just pretended to be the kid's mom and they both had fun. sometimes you just have to swallow your pride and ask--especially with kids. they have lots of friends and those kid's moms will probably be happy to pick up and drop off your pumpkins. I did it myself plenty of times before my husband got sick.

Hope this helps!

 

[cheerleader]

Barbie, you truly used problem solving skills to make things work. Kudos for having the good sense to swallow that dratted pride and making things work! Thanks for sharing!